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marieline
6th November 2014, 09:03
Hello all,
Are fasciculations and cramps good or bad signs?
We seemed to have mixed views re fasciculations and cramps. Some of us even viewed them as a sign of rapid progress. The pathophysiological explanation is simple: Fasciculations indicate that there is attempt at nerve reconnection to muscles.
On the other hand cramps is that connection attempt is happening to some degree, but in a rough way.
In my 9yrs of observation, i have suffered violent periodical episodes of cramps and fasciculations. In the beginning they served as two of the diagnostic symptoms for MND, so of course the brought along feeling of dread.
My focus was on managing the disagreeable feelings that come along with Fasciculations and cramps.
And after i came on the forum, i realised that we all had mixed and different views on those symptoms, and that some of us do not experienced them. Over the years however, despite the discomfort, the loss of sleep due to those 2 nasties, i have learned to cohabit with them, and have learned to appreciate that they are not all bad.
I have personally noticed that areas that cramped, rarely failed to function. Your views please.

"No one is defeated until defeat is accepted as a reality"

Marieline

pete
6th November 2014, 14:37
Hi Marieline,
I have no idea if the twitching is good or bad or just really annoying, I tend to suffer more from what I call spasms in my legs ,well more specific in the calf muscle, the physio who we saw last ,said we need to stretch rather than hard workouts as the tendons tend to get weaker ,it essential we keep them supple, we are on our fourth physio now the other three all got pregnant after we had seen them!!! So the latest one informed me , she gives me a simple stretching excersises that work, about the only good thing is it really does ease the pain so as I hate taking pills, really glad something's acheivable without anymore pills needed.

Pete

Terry
6th November 2014, 16:03
Hi Pete mate; Best see family planning before the next Physio.

Hi Marieline; I don't thing they are good signs, certainly not cramp/spasms as they really hurt and can cause damage. But do not read to much bad things into them as well.

Love Terry

marieline
7th November 2014, 00:08
Hello Pete, CC will have something to say to that, about getting all the physiotherapists pregnant :).
Re cramps, which i get in my hands and lower limbs and feet on a frequent basis ( most likely linked to woman business), i personally never take any pain medicine or antispasmodic for it, but i am sure that taking food rich in magnesium and stretching are the best way to go with it. At this stage i consider my status more as a chronic sufferer than a person with a terminal illness which initially was the case. Because these 2 symptoms are the most recurrent, i am trying to try and normalise them, just like you do with a headache, you don't always take panadol, sometimes just lying in the dark seems to do the trick. And i am glad that Stretching is working for you as well Pete. With time even my foot drop seems to be correcting itself, and that is all attributed to regular stretching, which does not involve an hour at the Gym.
And Yes Terry cramps and spasms are nasties, but i don't think that we should altogether suppress them though. They are probably not as bad as we may think, which is why i i'm trying to get some opinions on them. The explanation in textbooks are a bit obtuse and the Neurologist doesn't think much of them although he did suggest antispasmodic drugs, but i am like Pete on this one, i will never take a drug that i cannot stop anytime i like.
Is it periodical for you guys as well? i usually find that cramps and fasciculations hang around for about 2 to 3 weeks, during which time i maxed up on magnesium, bananas, constant stretching etc and then i will have up to 3 + months of relief. I have associated that to glutamate buildup in the motor neurones and neuronal death, that perhaps the build up is not continuous but it take that long for the clean up to take place. And after a major clean up perhaps it takes longer than we realise for a build up to take place. So perhaps if we pool our resources together we could perhaps find simple solutions. Just plucking at straws here, if we can't reverse it or cure it, we must try and find a way to live with it, without it being the centre of our universe. There are physiotherapists to get pregnant and so on
Best wishes Marieline

marieline
8th November 2014, 01:02
For those who are wondering why some people are a lot more bothered by fasciculations than others, we need to take into consideration the temperament.
Fasciculations in itself is not painful. it feels like you are being shocked with very low currents. Sometimes they can be very violent, i supposed it depend on the muscles that are being stimulated. the larger the muscle the bigger the electric shock felt, in my case you can even see the bed sheet being kicked. The same muscle can fasciculate for a few days, usually more noticeable when you are resting. However in my case, some parts of the body, like behind the collar bones and part of the upper chest, it feels quite disagreeable. There is absolutely nothing to be concerned about fasciculations (my thoughts). They are just telling us that something is happening to our motor neurones and that the brain is trying to fix it. In my opinion it is keeping me up to date of the extent of damage that are occurring in my brain. What happened if we suppressed them?
The reason why i added the thread was because i noticed some mixed opinions about those 2 things on the forum and talking about it will hopefully normalise them.
I believe what some folks find most painful are the cramps. They are very painful and the best way to deal with those is to manually stretch the parts (also painful) which will end the cramping episode. For me cramps will almost always occur in muscles that have fasciculated. One of the benefit of not suppressing symptoms are that you can collect your own datas and analyse them whichever way you wished.
The part that cramps , though annoying and painful never completely loose their strength and these parts i found respond well to exercise. As long as you remember to stop before fatigue, i always pushed past the pain point though. What happened if we suppressed the cramps?

Best wishes
Marieline

fishmate12
8th November 2014, 02:36
Yes, the Radical on Sheila's thread, what next?
Hi Marie,
I don't know what to think regarding spasms, cramps, twitching,...don't know if it's good or bad,
All i can say is i must be dead from the neck down, because i've never had any of them,..for many years now,
It just doesn't happen to me,...and i'm glad about it,.....can't imagine having cramps when bonking!!!

Thing is,..when we were apparently healthy,..our Nervous System/Muscles, all worked normally,
MND comes along, everything's shot,...messages from the Brain don't connect, or not properly, rot ensues,

So now, if the Brain's sending messages, are they piling-up/crossing over/mixing up/misfiring, etc,
causing or leading to,...cramps, fasiculations, etc.

Motor neurons in the brain and spinal cord convey electrical messages from the brain to the muscles to stimulate
movement in the arms, legs, trunk, neck and head. As motor neurons degenerate, the muscles do not work properly
and gradually weaken and waste away.
This muscle weakness and wasting affects speech, swallowing, movement and breathing.

You would have to take something that crosses the BBB,..cos that's where all messages come from,
to effect/suppress, your Muscle spasm,...good luck,
I don't know what Baclefen, Diclafenic, etc, do,

The Aussie version of creation, hehe

https://www.dropbox.com/s/coq8lzlqurb3onh/FW%20THE%20AUSSIE%20VERSION%20OF%20CREATION.msg?dl =0

RRRrrr xxx

BlueEyesOhio
8th November 2014, 04:40
Evening Marieline,
I started having cramps as my very first symptom. (Actually I had weak legs and muscle wasting in my left hand but ignored it) But the cramps were horrible. They were so bad I was sore the next day. I usually had them in my upper leg and calf. It felt as is something had torn inside the muscle. The cramps are not as bad now and I can usually catch it if I stretch the muscle and get the cramp to stop.

The twitching or faciculations don't really bother me. I find they don't twitch if I am cold. I usually get them all over when I am lying in bed all toasty and warm. It's rather comical. It's like my whole body is twitching. I told the 1st neurologist it was like someone playing the piano on my back. It does not bother me in the least. I heard that the twitching is the body's way of trying to reconnect the nerve and the muscle.

I don't think they are either good or bad. Although cramps are bad when they last long!!!

I guess we have our own little study going on here.


((((((((((((((hugs to all)))))))))))))

Lynne

marieline
8th November 2014, 09:30
Hey Mr Ray the radical,
Yes that did get me thinking the other day, because you claimed not having experienced fasciculations and cramps for several years, and your status have not deteriorated during those years either.
Could it be that you have reversed the disease, or enjoying a long period of remission.
The kink in that for you though was your peripheral neuritis. I know that it is blooming cold in Scotland and you probably didn't pay your heating bills. If it wasn't for that mate, i would definitely suggested that you had your cocktail trialled.
But nothing is black and white with MND :) there are definitely many shades of grey and as i said my observations of those many years are suggesting that perhaps the fear that we harbour for fasciculations may be exaggerated.
And i think it's worth discussing on the forum. and for a radical you seemed to have a very final explanation on the pathophysiology of MND. That's 6 billions neurones we are talking about, and based on the assumption that we are already sick years before the major symptoms occur, i am assuming that the progression is similarly paced, of course that will depend on our mental status, general health status of our major organs, our defence mechanism, toxic load (e.g heavy metals), nutritional status etc.
I am very excited with this topic and thank you for taking the "piss" out of our creativity, we are naturals :)
Be good and stay tuned
Marieline

marieline
8th November 2014, 10:00
Hello Lynne,
As you see, one size doesn't fit all with MND. I supposed this explained why after more than a century we are still knocking our head against the wall trying to crack the mystery of this illness. It is gobsmacking! I am glad to hear that you are coping with the cramps. I supposed heat and dehydration will aggravate them, as i believed you just had summer in the USA. You will find that winter have it's side effects too. At least it does for me and also when i ran of bananas and magnesium for more than a couple of weeks, if i do my craft or walk long distance, i always feel them, though i do not panic as i used to.

Yes fasciculations come when the body is at rest, i wish i could explain the physiology behind why a muscle will fasciculate and then stop after a few days.
Re muscle wastage, it can be explained by the fact that you are less mobile. I have always had skinny arms, i had the perception that my arms were thinner a few years ago, i was even weaker in the arm. Now i'm back carrying, opening jars, water bottle etc and my arms are definitely not wasted.
My last Neurologist report from October 16th 2014 says among other things "modest spasticity in the limbs with good retention of power in the arms and legs but with slowness of rapid repetitive finger movements, hand tapping and food tapping" Anyway i do not believe i was ever a good hand and foot tapper in the first place.
So Lynne we are keeping a neutral views on Fasciculations and Cramps and getting your views as you are just diagnosed is quite vital to our little study.
Best wishes
Marieline

BlueEyesOhio
9th November 2014, 03:07
Marieline,

One of the things that really bothered me about my 2nd neurologist was that he told me I was "very strong" I used to run on a treadmill every day and do weight training. I told him my legs and arms are weakening. He said, "I don't see it" This new neurologist from Cleveland Clinic said (and this cleared things up) my endurance is bad. Yes, my legs and arms are strong but I can only walk a short distance. This last neurologist told me it is a matter of "petrol in my tank" I am strong but I "run out of gas" quickly. That was VERY frustrating to me.

Do you not have cramps if you take magnesium and eat bananas? Magnesium and bananas cure the cramps?

Lynne

Trevorhb
9th November 2014, 11:07
What I have been told about muscle wastage is, as the motor neurons die there are no signals getting through to the muscles. If you do not use your muscles, they get smaller. Because of this exercise will not help, it is worth doing some in the form of stretches, but it will not help muscle wastage.

Terry
9th November 2014, 12:18
I think medium exercise does help keep muscle bulk and does some go for the rest of your body. They will still diminish but I think that I would not have the strength in my legs and knees to still stand safely. There's no proof of what I say is correct and over exercising does maybe do a lot of harm.

Terry

pete
9th November 2014, 13:06
Hi Terry,
Totally agree with you, my own views are you fight it or give in ,and giving in has never been an option, as for the views of professionals ,to be honest I havnt found them to know as much as like us to think they do, I do regular stretching exercises and repetive leg lifts as my physio recommended ,in the six years since though unable to walk unaided ,I can still shuffle about and stand without to much trouble getting about is vital and keeping muscles working as long as possible can only be good as other muscle tends to take over the task ,I always believed in use it or loose it, and just sitting in a chair leads to many other issues, though in time it may all prove futile as yet I have survived way past the prognosis given by those who knew all about motor neurone, so I am with you ,overdoing anything isn't wise but making an effort is very worthwhile ,rather than accepting what is supposed to happen because someone told you it would. Far too much negativity ,for once you believe your doomed you really are on the downhill slope to nowhere good. Keep fighting Terry.

Pete

Terry
9th November 2014, 13:15
I do think I doomed but will keep going as, (you probably don't believe it) I was once wrong before.

You are very right, Pete mate about other muscles taking over, you don't need all of them, it would be nice but others nearly do the same job.

You sound much quicker walking than me, I shuffle but very slow.

Regards Terry

marieline
10th November 2014, 12:30
Marieline,

One of the things that really bothered me about my 2nd neurologist was that he told me I was "very strong" I used to run on a treadmill every day and do weight training. I told him my legs and arms are weakening. He said, "I don't see it" This new neurologist from Cleveland Clinic said (and this cleared things up) my endurance is bad. Yes, my legs and arms are strong but I can only walk a short distance. This last neurologist told me it is a matter of "petrol in my tank" I am strong but I "run out of gas" quickly. That was VERY frustrating to me.

Do you not have cramps if you take magnesium and eat bananas? Magnesium and bananas cure the cramps?

Lynne

Hello Lynne,
I can certainly share my own experience on this one. Round about 2007, I was basically falling because one of my legs will just fold out under me. It used to be humiliating, because my relatives, whom i was visiting at the time found it funny. At the time i was hiking for many kilometres. After that i was not clearing my toes enough off the ground, because i'd developed foot drop, so i was falling as a result of that, then my ankles will get in the way of each other and i will fall because of that. Despite all the falls, i was walking more than 2kms a day, pushing myself beyond my limits. It took me that long to realise that i was causing a lot more damage. So Since June last year, i have cut back on the long walks after a major fall that scared me. I usually take a day's rest after a busy day, i usually take extra magnesium if my muscles are fatigued, and i have had no falls (touch wood) since April 2013. This year, my focus have been on the spasticity and i am lucky enough to have received a series of hydrotherapy sessions, which i must report work wonders on the spasticity. I also worked with a physiotherapist, she taught me some great ways to strengthen and stretch.
Just remember that the Neurologist advice is right. Do not push beyond fatigue. If you can check Fishmate's post, he talks of coconut oil and other stuff. Many used body builders supplement, i have only recently added Colostrum as part of my regime, it will be a while before i can say in what capacity it is helping. I personally have been taking magnesium since the very beginning because of the cramps and i always have some in the house for bad days. Bananas has always been part of my daily fruits, except these days, i have discovered eating a banana after dinner and taking some magnesium give me the best sleep i've had in years. Lynne i would not suggest running on a treadmill, but there are other things you can do in a gym, ask the boys here. You will find out what works for you by trial and error, so do not be afraid to try stuff. PS: The muscles get tired easily, does not mean that they are weak.
Best wishes
Marieline

marieline
10th November 2014, 12:43
Hello Pete and Terry,
Pete i too do the stretching and the leg lifts and some yoga, occasionally i do the stairs, but not so frequently any more. If you are willing to move, shuffling is good enough and as long as you can maintain the shuffling it means progress (not progression). I personally focus on the now, whatever awaits me in a year or so along the road does not concern me today, i do not pre-empt and expect the worse, i just try to maintain my body so that i can continue to live independently for as long as i can. My ultimate goal.
Best wishes
Marieline

Terry
10th November 2014, 12:52
Hi Marieline;

I did use the walking machine for a couple of years at the gym, I had the safety cut out on and they were good machines that stopped quickly.

Terry

pacer1971
10th November 2014, 13:47
Hello Marieline Lynne and Terry
For endurance exercise in the Gym one of the exercise bikes (but use the toe clips then you can pull up) or the rowing machine are exercises that do not impact on the joints and use a lot more of the muscle i.e. leg flexion than walking. If the swimming pool will let you use fins on your feet thats a good work out.
cheers
Darryl

Terry
10th November 2014, 14:29
Agreed Darryl;

Don't over do it. I had trouble controlling my breathing swimming so used a snorkel in a private pool.

pacer1971
10th November 2014, 14:36
Hello Terry
Try doing it on your back with hand paddles and sculling with them.
cheers
Darryl

pete
10th November 2014, 15:58
Hello Pete and Terry,
Pete i too do the stretching and the leg lifts and some yoga, occasionally i do the stairs, but not so frequently any more. If you are willing to move, shuffling is good enough and as long as you can maintain the shuffling it means progress (not progression). I personally focus on the now, whatever awaits me in a year or so along the road does not concern me today, i do not pre-empt and expect the worse, i just try to maintain my body so that i can continue to live independently for as long as i can. My ultimate goal.
Best wishes
Marieline

Hi Marieline,
You may be on the other side of the world ,but it seems our aims are much closer ,, and your outlook on life has served you well, and long may it continue . In my opinion this is one of the best threads yet, keep posting .
Pete
X

BlueEyesOhio
11th November 2014, 05:09
All,
I don't walk on a treadmill any longer. I have a hard time making it from here to there. I guess I can walk about 30 feet (9 meters). (I looked that up)

I can't stand a long time. It seems as though my legs are getting weaker. I had a physical therapy appointment on October 31. She asked me if I would try to do some exercises. She didn't know you are not supposed to do strengthening exercises. I was told that by a doctor. He said I could hurt myself if I tried to strengthen the muscles. Have you heard that?

I am trying to focus on the good things in my life and not the bad bits. I cannot think about things in the future. So I live one day at a time.

((((((((((((((hugs)))))))))))))))) to all Lynne

Trevorhb
11th November 2014, 10:16
I have been told by a physio that there is no pointing in doing exercises, you cannot strength the muscles which are effected by MND. Stretching exercises however are worth doing.

pacer1971
11th November 2014, 11:01
Hello Trevor
Your phisio is wrong! If you don't work a muscle it WILL atrophy without the MND. it may be comfortable to not work the muscle but it will loose strength, Exercise is what makes them strong.
It's anoying when so called professionals make statements to make the patient feel better when they know it's WRONG.
cheers
Darryl

Steve
11th November 2014, 11:42
Hi Darryl

I was told by quiet a few people including 2 consultants that once the muscle has lost the neurone connection that no amount of exercise will strengthen the muscle. The best thing you can do is stretching and range of motion exercises to keep joints and muscles moving.

Can someone clarify?

Terry
11th November 2014, 11:47
Hi Darryl;

I agree with you but when some muscles are quite far gone (which can happen even if you exercise) it is a struggle to move them at all. I think that's why the physio is saying that.

Terry

KarenaB
11th November 2014, 12:37
My problems currently are just with speaking & swallowing food & drink. I was referred to a physiotherapist and he's given me a stretchable band and a few arm & leg exercises and stretches to maintain some strength. He did advise me not to go mad and join a gym but to do the exercises when I felt like it.

pacer1971
11th November 2014, 13:40
Hello all I agree when the muscle has gone it's probably permanent but untill that time keep the muscles moving with resistance to stop the atrophy: that happens when people do nothing. The day I was diagnosed I told the consultant that I was going to cycle Lands End to John o groats his comment was don't buy a new bike for it. In June I cycled Coast to Coast for MND, August Bank holiday I cycled Cardif to Conwy, so how much faith do you put in professionals when they come out with that.
You are your measure of what you can do. (for me I have to try and I have to measure the rate of decline).
For people struggling to walk I would suggest clip your feet in an exercise bike on low setting and get you legs moving, increase the pressure when you are ready not other people.

I'm Sorry it came accross as a bit of a rant I don't mean to offend people.
cheers
Darryl

Springtime
11th November 2014, 14:09
Hello Darryl,

You didn't come across as having a rant Darryl, I think you are one of the most inoffensive guys I have met, so I could never picture you having a "rant" But I know you well enough to know you believe in what you have said on here and was just making your point of view heard. Take Care Spring x

marieline
11th November 2014, 14:29
All,
I don't walk on a treadmill any longer. I have a hard time making it from here to there. I guess I can walk about 30 feet (9 meters). (I looked that up)

I can't stand a long time. It seems as though my legs are getting weaker. I had a physical therapy appointment on October 31. She asked me if I would try to do some exercises. She didn't know you are not supposed to do strengthening exercises. I was told that by a doctor. He said I could hurt myself if I tried to strengthen the muscles. Have you heard that?

I am trying to focus on the good things in my life and not the bad bits. I cannot think about things in the future. So I live one day at a time.

((((((((((((((hugs)))))))))))))))) to all Lynne

Hello Lynne,
I suggest you see a physiotherapist to run you through the exercises, because they are specialised in all kind of diseases. You might need to see a few before you find somebody who actually work well with you. The leg lifts help to strengthen knees, abdominal muscles, calves, thighs etc they are strengthening exercises but no weight is involved, but they work.
Also following your question on how bananas work, i went and did some digging, earlier in the year i started compiling notes on food items that i thought was in someways helpful.
Let's talk about bananas, yellow when ripe, very popular among sports people and monkeys. Bananas are rich in potassium, magnesium, iron and chlorine.
On top of removing water and waste from cells, POTASSIUM is called the muscle mineral. In the liver, potassium is metabolised and rearranged chemically to form glycogen, an energy fuel for muscle tissue. Potassium will increase physical strength, so we must remember to replace it after exertion. So do not hesitate to eat that extra banana as it will Also benefit the heart is a muscle, If we increased our potassium intake, our heart muscles will just pump better and stay in better shape.
Now MAGNESIUM, is called nerve food. It is somewhat confusing because it is PHOSPHOROUS that is contained in large amount in white nerve cells and grey brain cells. So why don't we ever talk about phosphorous? Because we can have all the phosphorous in our nerve cells, but without magnesium, the cells will have no signals to conduct along the wires, no nerve messages will be passed on and received. Both minerals are necessary for proper nerve functioning, and nature is so good to us, both minerals are usually found in the same food sources. Bananas and apricots, almonds, wheatgerm, bran, tomatoes, bacon, ham, and heaps more, you can google.
We all know that our body need irons to maintain blood quality by aiding oxygen transport around the body to every cells (including our weakened muscles cells and tired motor neurone). Iron and oxygen together help burn out toxins and wastes and keep the body rubbish bins emptied and clean. Vitamin B12 also need Iron with it to function effectively. If you are eating foot rich in magnesium, you are probably consuming irons as well.
Last and not least bananas contain CHLORINE. Chlorine is called the regulator. A mineral that regulate the yellow systems, the liver, gall bladder, bile duct, pancreas, urinary tract. Chlorine will act as a stimulant and regulator of digestive enzyme balance. But sodium chloride on it's own will not help us, choosing food like bananas which is high in chlorine but also contain sodium and chlorine partners e.g. potassium and magnesium.
Please feel free to add more tips on bananas here if you've got any. Using supplements is a costly business, it is ok if you can afford it, but if we can rely on nature to give us our minerals, it is much better.
I believe this fruit definitely have a place on MND sufferers table. Tune in for COCONUT, another tropical fruit.
Best wishes
Marieline

marieline
11th November 2014, 14:37
I have been told by a physio that there is no pointing in doing exercises, you cannot strength the muscles which are effected by MND. Stretching exercises however are worth doing.

Well Trevor, i echo Pacer's words on that one. Please get the opinion of another physio. Muscles may atrophy if underused but muscles do no die. By potting around your garden, you are exercising your muscles, it does not not have to be in a gym, for me i need consistency or else i find that spasticity has crept in while i'be been lazing around.
Best wishes
Marieline

marieline
11th November 2014, 14:47
Hi Marieline,
You may be on the other side of the world ,but it seems our aims are much closer ,, and your outlook on life has served you well, and long may it continue . In my opinion this is one of the best threads yet, keep posting .
Pete
X
Dear Pete,
I am too inconsistent to take pills, i found that i couldn't finance an expensive lifestyle of costly supplements, we all know that the cheaper ones are basically what they are cheaper ones. Finding ways within my reach and expanding on what i believed work seemed more achievable. And already i am finding commonalities among us and that thread is worth pursuing. The aim is to figure out how we can normalise this life without becoming hypochondriac (:) ) and obsessed with a disease, at least until something promising comes along.
Life is certainly what we make of it.
x Marieline

marieline
11th November 2014, 15:07
Dear all,
I am no expert, and can only attest for myself. I have muscles that have weakened considerably but have reined them in with continuous use of the parts, i couldn't afford to. In January 2014, i was able to pick myself up from the grass at Kings Park, but In June i found that i couldn't do it. Physiotherapist assessment reveals that i have lost core muscle strength (in the abdomen). So she taught me some leg lifts, which is working by the way and i still do my yoga on the floor but i use a pouf to hoist myself up these days. I trust my last physiotherapist and she confirmed that muscles do not waste away as once believed. But in our case if spasticity has set it perhaps it could be irreversible, one question to ask the experts.
the best thing to do is to not sit and do nothing. Keep active. taking the rubbish out, helping the wife hang up the washing, picking up dead leaves, sweeping the garage and so many other things one can do.
Cheers
Marieline

marieline
11th November 2014, 15:17
My problems currently are just with speaking & swallowing food & drink. I was referred to a physiotherapist and he's given me a stretchable band and a few arm & leg exercises and stretches to maintain some strength. He did advise me not to go mad and join a gym but to do the exercises when I felt like it.
Hello KarenaB,
My problem started just like you. Dysarthrya, dysphasia, choking, drooling. I was lucky at the time to have an alternative doctor, he showed me throat exercises, and speech pathologist taught me all kind of exercises. The tongue is a muscle and it need to be exercised if you want to maintain speaking, eating, and swallowing. Your speech pathologist will help you with that. If you have nothing wrong with your limbs, you must keep yourself active but do not overdo of course. Sometimes it is wise to listen to your body and to confer with a specialist if you believe what you are doing is causing you harm.
Best wishes
Marieline

pete
11th November 2014, 16:03
Hi Marieline,
Seems like excellent common sense to me ,reading your posts, I attempt to do much the same ,I cannot see why keeping as active and doing as much as your able too without overdoing things is somehow alien just because we have a condition that limits your physical abilities. Anyone who thinks that sitting back and doing very little is anyway helpful,I find that idea totally bewildering ,doing even the minimum helps prevent digestive issues and constipation ,any form of non impact exercise of your limbs has to benefit your well being ,I don't pretend to understand all the techy speak ,it's just simple basic common sense ,that doing nothing is very harmful as it is when healthy and trying to keep mobile and work muscles while you can not only gives your muscles that are unaffected a much needed workout ,and stretching affected muscles certainly helps stop spasms, I have much better upper body strength and no hand issues other than general weakness ,why the little finger decides to wander off and do its own thing remains a mystery ?. As a bonus I firmly believe that keeping as mobile as I can has also helped with as yet no signs of respiritry problems as yet. I am not suggesting everyone can do this ,but do try , we are told by the medical profession that we have limited time, you don't have to believe them and doing all you can might just surprise you.
Regards
Pete

pacer1971
11th November 2014, 16:03
Hello Steve
I will agree with your consultant when a muscle has lost all neuron conections it will not work that is also known as paralysis, yep were all heading there but in the meantime lets use what we have for as long as we can or loose it.
cheers
Darryl

Trevorhb
11th November 2014, 16:43
Strange because as well as the physio, my neurologist, speech therapist and specialist nurse have all said you cannot strengthen muscles when they are affected by MND. Who do I believe?

pacer1971
11th November 2014, 17:06
Hello Trevor
They are not being honest with you in so far as if you can move a muscle you can maintian some strength in it. It is easier for them if you don't do any exercise then you will not have any aches or pains to complain about, which gives them less problems with you. I appreciate this is not what we come to believe of the caring profession but it is the opinion they have forced on me by their lack of Knowledge and ability to care about us.
If you want to maintainn some mobility then it is up to you as to how much exercise you want to take.
cheers
Darryl

Steve
11th November 2014, 17:15
I think everyones journey is different, I had rapid progression in my legs and went from walking to a chair over a short period. I was driving to work and walking as much as my body would allow. It made little difference to my progression.

I have a lot of admiration for people who are able to do physical challenges with MND, it wasn't an option for me unfortunately.

Just remember before you call our care team out for giving duff info that they know what we are capable of and what our limitations are. Trevor, I was told the same and in my experience it turned out to be true.

I would advise anyone to do exercise in moderation, remember you aren't fighting MND, you are putting your muscles under stress and there will be a point where you start to lose the benefit and do harm.

Steve
11th November 2014, 17:22
Hello Trevor
They are not being honest with you in so far as if you can move a muscle you can maintian some strength in it. It is easier for them if you don't do any exercise then you will not have any aches or pains to complain about, which gives them less problems with you. I appreciate this is not what we come to believe of the caring profession but it is the opinion they have forced on me by their lack of Knowledge and ability to care about us.
If you want to maintainn some mobility then it is up to you as to how much exercise you want to take.
cheers
Darryl

Daryyl I think you are being quite disrespectful to a lot of dedicated people. To suggest people are deliberately lying to us to give themselves an easy life is a really strong statement and one that many would take offence at.

I agree that some exercise is beneficial in MND but your last statement is taking things a bit far.

Trevorhb
11th November 2014, 17:28
I appreciate your comments Darryl and tend to agree with you. Often we the people who are living with MND tend to know as much about it as the professionals, or so it seems. I will keep up my exercises and stretches as I feel it is a way I am fighting back, but the medical team looking after me are so kind and helpful, I feel I do have to take notice of what they advise me to do as well.

pacer1971
11th November 2014, 17:44
Hello Trevor
The thing about stretches is when your doing them hold the stretch for a few minutes and also relax the muscle group your stretching.
an example is touching your toes, most people use their abs to pull themselves down and then they cant touch the floor because the back muscles react when you get close to your limit.
So try leaning against a wall (indoors) with your feet about a foot away from the wall and lean forward with your backside against the wall and just let your body hang there and relax all of your core muscles and you should notice your hands getting closer to the floor the longer you hang there as your muscles stretch out.

cheers
Darryl
p.s. been doing yoga for 15 years. if you want to build core strength then it Pialtes

Trevorhb
11th November 2014, 17:58
Thanks mate!

Alig2014
11th November 2014, 20:00
When Jean was sent home from hospital in December after losing strength in her thigh muscles she was never able to stand or walk again.

At that time Jean said she could feel her hands were getting weaker even though she was knitting for six or seven hours a day.

I was determined she wouldn't lose her hands as well and we exercised with elastic bands and I got her a pedal/bike which I put on a table for her to use. I also got her flexi bands which went over her fingers and did stretching exercises. She soon struggled to lift cups and cutlery to her mouth and within 3 months was no longer able to feed herself.

It really does depend on your your progression rate, it's all pot luck but if your well then moderate exercise can help your well being but I'm not convinced you can halt this cruel disease just make the best of everything while you have it

Alison x

Terry
11th November 2014, 21:16
Hi Alison;

I don't think exercising alters it's rate of progression, infact if over done it could speed it up. I just think it makes you time better in general.

Love terry

marieline
12th November 2014, 14:18
Hi all,
I can see that we are a bit divided on the subject of "exercise and MND". Many of us have chosen not to let this disease defeat us, can you blame us? I was told "not to overdo" but not to stop all physical activities altogether. I have always pushed my body beyond the point of exhaustion and i had to learn the hard way, i wouldn't have followed any advice anyway, and i wouldn't change it if i had a second option.
Now i am learning how to support my muscles while i continue to remain active. I have benefitted from remaining active and i am sure that i will continue to be so as long as my body allows it. Not being able to walk does not mean that one should not expend any energy, that is where physical therapists, carers, physiotherapists come in. It is a matter of balance and limitations and we all are old enough to choose that for ourselves.
I don't believe that there is a right formula with MND. From April 2005 up until about November 2013, i walked up to 4 kms (sometimes more) every single day, sometimes i was spending 3 times a week at the gym on top of that. In the beginning no one knew much about this disease. If you want to measure progression on this, i would say that i had a very good run and my legs though, tired, still respond to exercise and that's what we are divided on.
These days if i skip walking for a few days and do not stretch, i get all bloated, constipated and i do feel a very old lady. I definitely feel a lot more alert and feel better in my body being active. I can claim that physical activities have been beneficial for me, both for my general wellbeing and also maintaining strength in my muscles.

Best wishes
Marieline

Ellie
12th November 2014, 15:36
My tuppence worth ….
I was very active before I had ALS and post diagnosis, kept on exercising, albeit at a more moderate pace. Despite my best efforts, the disease had its own agenda and 18 months later, I was in a wheelchair with useless arms too.
I’ve had minimal progression over the last 5 years, but the days of “exercise” are long gone. I can only manage range of movement stretches; passive for my arms, shoulders and hands, active for my legs, torso and neck. Even though what I do is limited, it does stop joints seizing up.
Occasionally I get localised spasms, which I either stretch out or put a heat pack on, or both. I don’t get cramps.
Ellie

pacer1971
12th November 2014, 16:43
Hello all
While I do some moderate exercise I do suffer with cramp when I strain my muscles such as pionting your toes to get them into shoes my feet will cramp up or trying to scratch my own back my Biceps will cramp. When I rode from Cardif to Conwy over 180 miles over 3 days , on the first day we arrived at the camp site showerd and went for a meal; all the way through the meal my legs were cramping up and I had to get up and stretch them in the restaurant. On day 2 we covered the same distance 60miles but the hills were more frequent, we arrived at the bunk house and I immediatly had a whey protien drink showerd and went for a meal. No cramp that night.
So now when I exrecise I always have a protien drink after the exercise.
A power lifter friend of mine says you need 1.5g of protien per lb of body weight. I admit I cant eat that much protein.
Hope that helps
cheers
Darryl

pete
12th November 2014, 17:01
Hi Ellie,
Do what you have too, no more no less, it's like everything else what suits one is not for others, we all find our own solutions, I don't believe that one way is the right way for all of us we remain individuals despite having this and we will all find what's best for us as ever have the best day you can over in the Emerald Isle.

Pete

pete
12th November 2014, 17:13
Hi Darryl,
Not surprised you had cramp after riding that far, I admit my rides where far less strenuous ,just hanging on for dear life trying to tame the blade, never managed it but enjoyed every minute , back to reality, I take the ensure compact drinks now my diet is a bit restricted and find these help and have pretty much stopped the cramps , having bulbar it really messes up what you can eat, how I miss Macdonalds and Kentucky chicken ,yes I know not good food but it served me well over the years having to eat while driving across the country from one job to another..
Pete

ardalon
12th November 2014, 17:18
I agree Pete. I do exercises but not too much. What helps me most is the acupuncture I get once a week . It doesn't last that's why I have it done every week. I don't say it's good for everybody but definitely worth trying. Arda

pacer1971
12th November 2014, 17:46
Hello Pete
I tried some of those drinks they were good but I can't find where to get them from do you have a source.

cheers
Darryl

pete
12th November 2014, 17:50
Hello Arda,
I have not tried acupuncture for relief in mnd ,but it's good to hear that you get some benefit from it, we all find solutions to our needs , very much shows how unique we are.

Pete.

pete
12th November 2014, 17:55
Hi Darryl,
Yes mate, do you see a dietician at all, mine has supplied them to me because she thought my diet was lacking in mineral intake, so hence the drinks ,like a milk shake and being quite small in volume I can drink them without any problems ,hope you get sorted .

Pete

Springtime
12th November 2014, 19:35
Hi Darryl,

jim has the ensure plus drinks, MND team at Liverpool wrote to our GP because of Jims weight loss. Fortunately hes stopped losing weight since taking them. Catch up with you soon.

Spring X Hug to Sue xx

marieline
13th November 2014, 03:15
Hi Marieline,
Seems like excellent common sense to me ,reading your posts, I attempt to do much the same ,I cannot see why keeping as active and doing as much as your able too without overdoing things is somehow alien just because we have a condition that limits your physical abilities. Anyone who thinks that sitting back and doing very little is anyway helpful,I find that idea totally bewildering ,doing even the minimum helps prevent digestive issues and constipation ,any form of non impact exercise of your limbs has to benefit your well being ,I don't pretend to understand all the techy speak ,it's just simple basic common sense ,that doing nothing is very harmful as it is when healthy and trying to keep mobile and work muscles while you can not only gives your muscles that are unaffected a much needed workout ,and stretching affected muscles certainly helps stop spasms, I have much better upper body strength and no hand issues other than general weakness ,why the little finger decides to wander off and do its own thing remains a mystery ?. As a bonus I firmly believe that keeping as mobile as I can has also helped with as yet no signs of respiritry problems as yet. I am not suggesting everyone can do this ,but do try , we are told by the medical profession that we have limited time, you don't have to believe them and doing all you can might just surprise you.
Regards
Pete

Dear Pete,
I do hope folks are not taking those posts as a advice. I am just sharing my opinion, based on pure common sense. I too cannot express myself in big technicalities. Just the basics, because at the end of the day, when we are at home alone, the bin has to be emptied, the surfaces have to be wiped, the dishes done, the bed linen changed, the food cooked. the floor mopped, or the carpet vacuumed. How frequently i do it does not matter, nor how long it take me to do them. But doing them allows my body to move, stretch, bear weight , as Pete wrote in hear just assist with the proper functioning of the other systems of our body. Not to forget that if they function better, our general health will improve so will our quality of life.
my left "index" finger, not sure if it's called the same in English, too has developed spasticity now for a few years, i try to keep it flexible and make sure i include it when i do things, i do not consider it any less, although i wouldn't attempt to thread a needle.
I totally agree with Pete, that we all are capable of something, wether it's just to bend down to pick something on the floor, to wipe dishes if you are chair bound should not be looked down upon as a waste of time. In our case every movement counts. That is how i view it.
Best wishes x
Marieline

marieline
13th November 2014, 03:35
My tuppence worth ….
I was very active before I had ALS and post diagnosis, kept on exercising, albeit at a more moderate pace. Despite my best efforts, the disease had its own agenda and 18 months later, I was in a wheelchair with useless arms too.
I’ve had minimal progression over the last 5 years, but the days of “exercise” are long gone. I can only manage range of movement stretches; passive for my arms, shoulders and hands, active for my legs, torso and neck. Even though what I do is limited, it does stop joints seizing up.
Occasionally I get localised spasms, which I either stretch out or put a heat pack on, or both. I don’t get cramps.
Ellie

Ellie, thank you for sharing. This is exactly what we are referring to when we talked about exercising. I do not go to a gym. I do everything that you do, except i am still able to walk and continue to live alone. So i am forced to expend a bit more. This disease has a mind of it's own. You have had no progression in 5 years. I read your posts, from what you write, i know that you are coping well. And you too just confirmed that "moderate" exercise does help with localised spasm and keeps flexibility in the joints.
This is what we've been divided upon. And i personally doubt that this form of exercise could increase progression. I wonder what our male counterpart's opinion are on this?
Best wishes Marieline

marieline
13th November 2014, 03:48
Hi Darryl,
Not surprised you had cramp after riding that far, I admit my rides where far less strenuous ,just hanging on for dear life trying to tame the blade, never managed it but enjoyed every minute , back to reality, I take the ensure compact drinks now my diet is a bit restricted and find these help and have pretty much stopped the cramps , having bulbar it really messes up what you can eat, how I miss Macdonalds and Kentucky chicken ,yes I know not good food but it served me well over the years having to eat while driving across the country from one job to another..
Pete

Hi Pete,
sorry to hear that you're missing your favourite food. My niece will love you, she believes that Macdonalds and Kentucky are the best food ever invented. But from my reading you are not missing much. In my research into nutrition, it is suggested that we are best to avoid trans - fat and moderate our consumption of animal fat as well. I still crave for a lamb chops once a month or so and regularly get asked to make porch belly and pumpkin dish for a friend and it is hard to resist. As for muscles support, bananas and extra magnesium seems to work for me so far and also keeping hydrated, a lot of the time, i find that i do not drink enough.
Best wishes
Marieline

marieline
13th November 2014, 03:58
Hello all
While I do some moderate exercise I do suffer with cramp when I strain my muscles such as pionting your toes to get them into shoes my feet will cramp up or trying to scratch my own back my Biceps will cramp. When I rode from Cardif to Conwy over 180 miles over 3 days , on the first day we arrived at the camp site showerd and went for a meal; all the way through the meal my legs were cramping up and I had to get up and stretch them in the restaurant. On day 2 we covered the same distance 60miles but the hills were more frequent, we arrived at the bunk house and I immediatly had a whey protien drink showerd and went for a meal. No cramp that night.
So now when I exrecise I always have a protien drink after the exercise.
A power lifter friend of mine says you need 1.5g of protien per lb of body weight. I admit I cant eat that much protein.
Hope that helps
cheers
Darryl
Hi Darryl,
Just wondering, how are your leg muscles these days? Are their any signs of wasting? How often do you exercise or ride? Yes protein supplements seemed to be a recommendation in America. I recall that a few years back my dietitian did suggest ensure, but i was doing ok on my actual diet, so i declined the offer.
Perhaps now will be a time to do some reading. At the time, i was concerned that by maxing up on protein, i may increased my PH level, but i am sure that this can be counteracted if i eat the appropriate food. Most of my male friends here take whey protein supplement. They definitely have great bodies.
Best wishes
Marieline

marieline
13th November 2014, 04:02
I agree Pete. I do exercises but not too much. What helps me most is the acupuncture I get once a week . It doesn't last that's why I have it done every week. I don't say it's good for everybody but definitely worth trying. Arda

Hello Arda,
I too is a big fan of acupuncture. I do not believe that it is beneficial on parts that are already affected by spasticity, but i used it mostly on the neck, shoulder and back area. Unfortunately i am down to 1 session a month, you are right, weekly sessions work best.

Best wishes
Marieline

Barry52
13th November 2014, 12:34
Hi all,
Marieline asks what our male friends think think about this subject of exercise so here is my take on the subject. 3 years on with PLS I am slower and more robotic at walking. I also have lost strength in my arms but you will all be familiar with that. I share many of the usual symptoms such as chocking, cramps, falls and faciculations but I do believe the regime I follow has slowed progression although there is no way of proving it.
Shortly after diagnosis I started swimming 3 times a week but gave that up a year ago because it was too difficult to haul myself up the steps to get out of the pool. I then joined a walking group on recommendation of my GP and I firmly believe this has helped retain the strength in my legs. Fortunately some members of this group are late 70's so the pace is not a challenge. I need help if we encounter a style but we often cover 3 miles and occasionally 5 miles.
There are 2 points I believe are valid. One is that we need to keep movement going in all our limbs within the limits of our physical condition and two that to have some sort of regime which gives us purpose as we deal with this disease.
Remember that our journey with MND is not a war but many battles will need to be fought along the way.

Best wishes to all,
Barry

pete
13th November 2014, 13:21
Hi all,
Marieline asks what our male friends think think about this subject of exercise so here is my take on the subject. 3 years on with PLS I am slower and more robotic at walking. I also have lost strength in my arms but you will all be familiar with that. I share many of the usual symptoms such as chocking, cramps, falls and faciculations but I do believe the regime I follow has slowed progression although there is no way of proving it.
Shortly after diagnosis I started swimming 3 times a week but gave that up a year ago because it was too difficult to haul myself up the steps to get out of the pool. I then joined a walking group on recommendation of my GP and I firmly believe this has helped retain the strength in my legs. Fortunately some members of this group are late 70's so the pace is not a challenge. I need help if we encounter a style but we often cover 3 miles and occasionally 5 miles.
There are 2 points I believe are valid. One is that we need to keep movement going in all our limbs within the limits of our physical condition and two that to have some sort of regime which gives us purpose as we deal with this disease.
Remember that our journey with MND is not a war but many battles will need to be fought along the way.

Best wishes to all,
Barry

Hi Barry,
Keep doing what your able, and your quote about battles is so true, no doubt we will all face things that look impossible ,but just trying is worthwhile as long as you approach challenges sensibly and don't put yourself or others at risk , only by facing problems do you realise just how remarkable the human body can be at times we all have felt the despair of yet something else has been added to the no longer able list,but when you do manage to do something the feeling of success is well worth it.
Pete

marieline
14th November 2014, 01:36
Hi all,
Marieline asks what our male friends think think about this subject of exercise so here is my take on the subject. 3 years on with PLS I am slower and more robotic at walking. I also have lost strength in my arms but you will all be familiar with that. I share many of the usual symptoms such as chocking, cramps, falls and faciculations but I do believe the regime I follow has slowed progression although there is no way of proving it.
Shortly after diagnosis I started swimming 3 times a week but gave that up a year ago because it was too difficult to haul myself up the steps to get out of the pool. I then joined a walking group on recommendation of my GP and I firmly believe this has helped retain the strength in my legs. Fortunately some members of this group are late 70's so the pace is not a challenge. I need help if we encounter a style but we often cover 3 miles and occasionally 5 miles.
There are 2 points I believe are valid. One is that we need to keep movement going in all our limbs within the limits of our physical condition and two that to have some sort of regime which gives us purpose as we deal with this disease.
Remember that our journey with MND is not a war but many battles will need to be fought along the way.

Best wishes to all,
Barry
Hi Barry,
I am feeling too lazy to convert 3 miles into it's kilometre measure, but knowing that there are other school of thoughts in regard to physical exercise and MND is reassuring. I couldn't have summarised this in a better way. It is what it is. "Finding some kind of regime to give us purpose as we deal with this disease" of course within our limitation.
I have been a big fan of "neuroplasticity" from the beginning of the illness, although at the time the term was unfamiliar to me, until i came across a book titled - "The brain that changes itself" by Norman Dodge. Since then i have been practising the concept of the constraint induced therapy in my activities of daily living. This is not for everyone, (i am a bit freakish, i am doggedly stubborn and i have a lot of patience) but i am sure many of us practise it without even realising.
I have learned important informations on this thread already and i am definitely going to implement them, among other things include a protein supplement before and after strenuous activities. I have Pete and Darryl to thank for sharing the info.
Last summer i included rehydration salt, thinking that it will keep me going longer, it probably helped but it also raised my blood pressure, i probably took too much, but it didn't agree with me. Ensure, bananas, fresh coconut drink and meat and extra magnesium will be this summer trial regime.
Talking of fresh coconut drink and meat, i consumed at least 3 of those a week in summer, and my research showed that they are rich in potassium. As mentioned in this thread, potassium is a muscle mineral. Also very important for those of us who suffers cramps, pain potassium metabolism in tissue fluids, causes an alkaline reaction which chemically changes and removes acid waste from tissues, joints etc. The pain level is a lot more controlled . Heaps of foods are rich in potassium and one can never consume too much of it.
Best wishes
Marieline

ccinjersey
14th November 2014, 05:56
Hi Marieline

You stated you been living with this illness for nine years, and you still have mobility and living independently, clearly your regimen is working. I would hope that if it can work for you it can work for others.

There is one crucial common thread that a few of you here share besides, exercise, supplements, and diets, and that is the power of your mind. Steel willpower and ferocious positive energy and thinking seems to be a winning weapon you seem to have. I can only believe that this too is also playing a key role in all this.

Just my observation…:)

CCxoox

miranda
14th November 2014, 11:59
Hi CC
I am 7 years since diagnosis plus approx 2 years waiting. No supplements, minimal exercise (or to be honest, none) but a lifetime of a well balanced diet with lots of fresh fruit and veg. I rarely ate junk food but now eat a soft diet - mainly ready meals with pasta and lots of sauces and cream. I have maintained my weight which I believe is significant. As we so often say on the forum, we are all so different but like you, I think a positive attitude helps. Easy for me to say but I am aware that for those with a more rapid progression it must be nearly impossible to see any positivity.

ccinjersey
14th November 2014, 13:53
Hi Miranda

Yes that makes sense. It just makes me wonder if mind power, along with finding a specific regimen that works for each individual can slow down a rapid decline with this illness??

If you look at some cancers that are so aggressive and metastasize quickly, it doesn’t seem like a person even with strong will power can stand a chance for long. I guess the same can be said for this illness, but with mnd it just seems so all over the chart, so individual in its form, that it does seem to respond in some ways being battled from the mind down. So many sufferers here are living testimony to that to me…even the medical profession with this illness don’t have the answers to the hows, whys, causes and explanations to this illness and why some are still here that should not be ??

Steve
14th November 2014, 14:33
I believe this disease is so destructive and powerful that it has its own plan for us and any intervention will have minimal consequences. I also believe that in future we will classify MND as lots of separate forms beyond the 4 we currently use. That is why we have such vastly different outcomes.

However this thread does contain some really useful pieces of advice. Stretching (however it is done) and range of motion exercises that get your muscles and joints moving are very beneficial. Beyond that I am not convinced that muscles affected by MND should be over stressed because of their inability to recover, some people obviously disagree.

Anything that is a good idea for a healthy person is obviously beneficial to us. Eating a healthy balanced diet and maintaining a positive outlook and looking after your mental health is not only a good idea for us but helps our loved ones in a difficult time.

Barry52
14th November 2014, 17:34
Hi Marieline,
Never mind converting miles to kilometres, just your very mention of a summer diet has me green with envy. We are experiencing high winds and rain with flooding in some parts of the UK. I'm just off now to prepare a warming winter casserole.

Best wishes
Barry

boreham1
14th November 2014, 20:35
Dear all,
I am no expert, and can only attest for myself. I have muscles that have weakened considerably but have reined them in with continuous use of the parts, i couldn't afford to. In January 2014, i was able to pick myself up from the grass at Kings Park, but In June i found that i couldn't do it. Physiotherapist assessment reveals that i have lost core muscle strength (in the abdomen). So she taught me some leg lifts, which is working by the way and i still do my yoga on the floor but i use a pouf to hoist myself up these days. I trust my last physiotherapist and she confirmed that muscles do not waste away as once believed. But in our case if spasticity has set it perhaps it could be irreversible, one question to ask the experts.
the best thing to do is to not sit and do nothing. Keep active. taking the rubbish out, helping the wife hang up the washing, picking up dead leaves, sweeping the garage and so many other things one can do.
Cheers
Marieline

The fasciculations in my legs bother me at night and cramps in the early morning but i stretch them out in my half sleep release and they stop. About a a couple of years ago (before MND diagnosis aug/ 22/14) I suffered really strong cramps in the night for about a week the doctor gave me quinine but the damage to my right leg while slight got progressively worse to the point that i would fall at badminton regularly. After the foot slap arrived I kicked up a fuss with the doctor. Neurologist/EMG/CT scan/ Lumbar puncture etc (some form of anterior horn cell disease ?) since then my right foot has wasted away/ foot drop, I ware a foot up. I have become very unstable in the last week or so since a fall (Fear or imbalance?) I do streches and I am now going to the gym at least once a week just working my arms and legs on a machine and a bit of core work with a ball with a phisio present I think it has made it easier to get out of the chair ? although I too can no longer pick myself off the ground, I have to crawl to something ! my body craves sugar all the time now especially in the evening so I like the idea of replacing the bag of jelly babies with bananas. I also keep busy all day house work, cooking, Visiting people (can still drive) although i cant find the mental strength to finish the work tops in the kitchen (too heavy) I'm trying to keep a record of stuff happening but living day to day means i don't keep up with it. Still I'll let you know how i get on with the gym! By the way i have never even considered impregnating my phisyo (that's what i tell my wife anyway ) yes i read from the top.
Colin.

marieline
15th November 2014, 14:18
Hi Marieline,
Never mind converting miles to kilometres, just your very mention of a summer diet has me green with envy. We are experiencing high winds and rain with flooding in some parts of the UK. I'm just off now to prepare a warming winter casserole.

Best wishes
Barry

dear Darry,
How i envy you your cooler temperature. Summer, humidity, heat is a bit tough on me, so i am always planning ahead. Last year's rehydration salt had some adverse effect, this year should be easier.
I do not envy your wind though, but then when it's too cold, i can barely get my muscles to move, currently the weather is perfect high 26 - low 10. Already mangoes and cherries are on the supermarket shelf. I am a glutton for seasonal food and eat to excess, happy to share my fruits with you anytime :)
Best wishes

Marieline

marieline
15th November 2014, 15:10
The fasciculations in my legs bother me at night and cramps in the early morning but i stretch them out in my half sleep release and they stop. About a a couple of years ago (before MND diagnosis aug/ 22/14) I suffered really strong cramps in the night for about a week the doctor gave me quinine but the damage to my right leg while slight got progressively worse to the point that i would fall at badminton regularly. After the foot slap arrived I kicked up a fuss with the doctor. Neurologist/EMG/CT scan/ Lumbar puncture etc (some form of anterior horn cell disease ?) since then my right foot has wasted away/ foot drop, I ware a foot up. I have become very unstable in the last week or so since a fall (Fear or imbalance?) I do streches and I am now going to the gym at least once a week just working my arms and legs on a machine and a bit of core work with a ball with a phisio present I think it has made it easier to get out of the chair ? although I too can no longer pick myself off the ground, I have to crawl to something ! my body craves sugar all the time now especially in the evening so I like the idea of replacing the bag of jelly babies with bananas. I also keep busy all day house work, cooking, Visiting people (can still drive) although i cant find the mental strength to finish the work tops in the kitchen (too heavy) I'm trying to keep a record of stuff happening but living day to day means i don't keep up with it. Still I'll let you know how i get on with the gym! By the way i have never even considered impregnating my phisyo (that's what i tell my wife anyway ) yes i read from the top.
Colin.

Dear Colin,
It was mentioned earlier in the thread that cramps could be damaging to muscle. I personally has never encountered it. I have weakened muscles everywhere in my body, but personally i wouldn't attribute them to cramps, would be more likely reduced nerve supply.
I was given also those fancy splint for foot drop, i could not always wear the shoes i wanted, so i discovered that ankle length boots, (have to be quality shoes) did as good a job, have been wearing them ever since
I too loose balance sometimes, Hydrotherapy can help with that one, your physio will refer you. I try to do a 2 minutes exercise in the dark before bed, it includes standing with one foot in front of the other but it is impossible to not fall, so i cheat. I believe i lost some confidence as well, after so many falls, i do not trust the uneven pavements around here, so i am hyper vigilant these days when out and about, perhaps because of the fact that i could probably not pick myself up.

Talking of sweet, you could have whole grain bread, bran, peaches, apricots, bananas, sunflower seeds, they are all packed with potassium and yes i eat 1 bananas every night after dinner and an extra 2 during the day. I wouldn't take jelly beans personally as an evening snack, as a one off treat at the movies, but not to store at home :) sugar is too addictive. What about dark chocolate? It has just been added to the superfood list, 100gm will provide you with your daily need of Zinc. Zinc as Mr Fishmates mentioned in his post is necessary for making new cells, also in healing wounds and injuries, will protect you from colds in the winter season, not to mention, male need it for a healthy reproductive health. The question is why do you crave sugar in the evening?

I just spotted out this bit of info, may be pertinent to your sugar cravings. B 3, Niacin - Dates, broccoli, tuna, lean chicken are good sources of that vitamin will help prevent your sugar level from fluctuating and even out the energy release.

You mentioned working very hard. In the beginning i had great bouts of fatigue, because i was not connecting fatigue as a symptom of MND, until i saw a dietician. Instead of jellybeans i was drinking i beer every evening to pick myself up, approved by the dietician, because i am a very fussy eater. Being more aware i eat more evenly, most of my energy come from nuts, avocado, fruits, dried fruits, yoghurt, brown rice, lentils and other legumes, fish, fruits, veges. I keep it simple, and doing better energy wise even on hot days.

Anyway you probably are doing all that. Have you thought of asking your dietician about Ensure? I am realising that perhaps expending a lot, a protein supplement could help. Because i do know that our batteries run low and they need more frequent recharges. Terry suggestions, and i am going to take it on board.


Yes Pete has been working overtime i'm afraid, at this rate he risk all the physiotherapist out on maternity leave.

Best wishes
Marieline

marieline
15th November 2014, 15:34
Hi Marieline

You stated you been living with this illness for nine years, and you still have mobility and living independently, clearly your regimen is working. I would hope that if it can work for you it can work for others.

There is one crucial common thread that a few of you here share besides, exercise, supplements, and diets, and that is the power of your mind. Steel willpower and ferocious positive energy and thinking seems to be a winning weapon you seem to have. I can only believe that this too is also playing a key role in all this.

Just my observation…:)

CCxoox

CC hello,
Your observations are always handy, i always trust a woman's intuition. A wholistic approach is certainly necessary. A flexible mind, an open mind, a strong mind is not only necessary to cope with MND but with life in general. You do your best, at the end of the day it's about contentment and peace of mind, the journey has to continue, until we so choose that we've had enough.
In the beginning it is difficult, because one have to cope with so much sudden changes, grief, loss. It is hard. Like Steve mentioned, MND is complex and cannot be boxed. I do find time to play and enjoy my life regardless.

Best wishes xxoo
Marieline

marieline
15th November 2014, 15:53
I believe this disease is so destructive and powerful that it has its own plan for us and any intervention will have minimal consequences. I also believe that in future we will classify MND as lots of separate forms beyond the 4 we currently use. That is why we have such vastly different outcomes.

However this thread does contain some really useful pieces of advice. Stretching (however it is done) and range of motion exercises that get your muscles and joints moving are very beneficial. Beyond that I am not convinced that muscles affected by MND should be over stressed because of their inability to recover, some people obviously disagree.

Anything that is a good idea for a healthy person is obviously beneficial to us. Eating a healthy balanced diet and maintaining a positive outlook and looking after your mental health is not only a good idea for us but helps our loved ones in a difficult time.

Hello Steve,
I am not going to preach here mate, but "belief" has a powerful influence on our mind.
You believing In MND to be the almighty of all diseases not only take away your volition to fight it, but accept that your body has no healing power whatsoever. You rationalise it so well, meaning that your mind is sharp, and yet you are prepared to accept the worse more than to believe in your own body.
It is true that some progressions are rapid, but i will still maintained that we should not let go of a muscles, and i do not mean that we need to go to the gym, just to keep ourselves occupied with chores that allow us to use our limbs, body.
MND being a progressive illness, unless there is a treatment that fits all, we are going to be challenged constantly until our body cannot cope anymore, but by sharing tips that has worked for us, and by implementing those tips for ourselves, we can probably make this time a lot more fun. And it is no rocket science, just basic steps that we are probably already doing.
Best wishes
Marieline
Li

ccinjersey
15th November 2014, 23:43
Some powerful words there sister friend.

I think those that are already living and practicing what your saying, know and feel the benefits of it. Those that don’t see it from your prospective might be having a harder time understanding what mind power can really provide when battling an illness such as this. I’m not preaching either just making an observation…:)

I might have shared this before, but for those that new here will mention it again. When my dear friend was given her diagnosis from a world renown specialist in ALS in NYC, an older Japanese doctor who spent his career in motor neuron diseases. He pointed to her head and said to her, ‘This is the most powerful weapon you have in fighting this illness’ at that time neither she or I really knew exactly what he meant by that, but those words have stayed with me.

Thanks about the intuition part Marieline. For me my intuition goes beyond intuition. We all have it, but we all don’t use it. I remember reading we human beings only use 10% of our brain power, makes me wonder what the other 90% is capable of doing ??

CCxxx

marieline
17th November 2014, 03:19
Some powerful words there sister friend.

I think those that are already living and practicing what your saying, know and feel the benefits of it. Those that don’t see it from your prospective might be having a harder time understanding what mind power can really provide when battling an illness such as this. I’m not preaching either just making an observation…:)

I might have shared this before, but for those that new here will mention it again. When my dear friend was given her diagnosis from a world renown specialist in ALS in NYC, an older Japanese doctor who spent his career in motor neuron diseases. He pointed to her head and said to her, ‘This is the most powerful weapon you have in fighting this illness’ at that time neither she or I really knew exactly what he meant by that, but those words have stayed with me.

Thanks about the intuition part Marieline. For me my intuition goes beyond intuition. We all have it, but we all don’t use it. I remember reading we human beings only use 10% of our brain power, makes me wonder what the other 90% is capable of doing ??

CCxxx

Dear CC girl,
I don't analyse everything, :) for me it's a matter of getting to the end of the day and knowing that i am still functioning. It is reassuring to hear that about your friend's doctor. By the sound of it, your good friend is using all her might to fight the illness. I believe the power of the mind is no longer a secret, but it is good to have it reaffirmed.
But using so much will power, being constantly hyper- vigilant unfortunately has it's toll as well. The question is how long can one keep up?
Keep well
xxoo Marieline

pete
17th November 2014, 14:10
Hi, Marieline,
Again we seem to see things very much the same, I found from day one spending your day wondering what may happen and MND being the only thing you think about ,to be futile and a waste of time, life will do as it pleases, nothing you spend life worrying over will make a jot of difference to what happens in life just make your days and the family's a whole lot less pleasant. For myself I tend to do as I have always done ,get up everyday and make the most of the day, I cannot understand letting something beyond your control make the days worse than they have to be . As you say,being despondent has its costs in terms of quality of life ,you don't need to add to your troubles ,we have enough already.

marieline
18th November 2014, 00:54
Hi, Marieline,
Again we seem to see things very much the same, I found from day one spending your day wondering what may happen and MND being the only thing you think about ,to be futile and a waste of time, life will do as it pleases, nothing you spend life worrying over will make a jot of difference to what happens in life just make your days and the family's a whole lot less pleasant. For myself I tend to do as I have always done ,get up everyday and make the most of the day, I cannot understand letting something beyond your control make the days worse than they have to be . As you say,being despondent has its costs in terms of quality of life ,you don't need to add to your troubles ,we have enough already.
Hello Pete,
Despite all the impregnation, you manage to keep a level head! The friends who get to hang out with me are those who don't spend all their time asking about my health status, how is your pain? how is that or this? I much rather do something fun like, kicking someone's butt in scrabble, or go for a long drive. So true Pete. We can control how we feel, how we interact with our loved ones, but we cannot control certain things. Recently i had a visitor, and we hit town for a bit of shopping, she spend the entire time we were out commenting how much attention i was drawing from the crowd. I smile at people and they smile back in return, offer a lot of apologies for being too slow, but i certainly do not see people staring. Our life is difficult enough as it is, my motto is if i don't see it as a problem, you shouldn't even mention it, because i may be focussing on more important issues. Carers, friends need to learn to let go sometimes. It's a bit like having a toddler, when do you let them chew on a piece of carrot without constant supervision, or run in the backyard or handle a pencil. I feel often that i have been similar to a toddler, growing up in confidence as i am left alone to resolve my many challenges. In this there is frustration, tiredness, impatience, but life is also good and beautiful. I never think of MND as me having been dealt the wrong hand of card.
Anyway i should have written a poem :)

Best wishes x
Marieline

ccinjersey
18th November 2014, 02:01
Hi Marieline

Don’t listen to your friend that was an insensitive comment to make and not true. Unless a person has two heads and ten feet people are to oblivious to care or stare at a person with a cane, walker or wheelchair. Why would a physical aide needed draw attention from a crowd ? Unless a person lived under a rock their entire life those physical aides are everywhere and used by young and old alike. I hope you kicked her butt in scrabble :)

Also hope you never lose your winning spirit Marieline, I’m sure you don’t think of it this way because your just being you, but your attitude and outlook is really inspiring.

CC xoox

BlueEyesOhio
18th November 2014, 06:27
Marieline, May we all have the great attitude you have. And like Pete said - if I may paraphrase - we have a choice what we think. Thinking and reacting negatively will get you no where.

I think our attitude is really the only thing we have control over. We certainly don't have control of the weather or the economy.

I like to have a grateful attitude. I try to see the good in everything. It really helps. I've tried thinking about the future and it isn't helpful.

((((((((((((((((((hugs all)))))))))))))))))

Lynne

crackers
18th November 2014, 10:12
Hi Mariline and all.
I'm now going to put the 'cat among the pigeons'. I have the most violent excruciating cramps and spasmns ( C and S) from the base of my neck to both feet (night only) starting November 2011. I think the sleep mode allows signals from the brain to change. The condition woke me almost hourly which was B' frustrating. My Ataxia Neurologist prescribed Pregablin at 300m which helped modify condition and also lifted my mood issues helping with sleep deprivation.
Luckily I have a great GP, who is now my freind. My GP has prescribed Quinnine Sulphate in a low dose. This really has worked and I only wake 3 times nightly . I tend to wake before the (C&S) and luckily I can still turn and stretch to attend problem. At 0700 Sue works a regime of physiotherapy exercises on both legs and feet. This works brilliantly and I am OK for the day.
When waking I still have a full body cramp but when it passes my limbs are much more relaxed which helps with movement. This problem MND is a real puzzle. For me it seems the cramps help, at least when waking, and like Mariline have learned to live with them.
If between my GPand myself we come up with a method producing zero cramps and we are close to this I will let you all know.

Keep up the good work

Kelvin

boreham1
18th November 2014, 14:48
I shouldn't have said anything about how easily i coped with my cramps! the last two nights my magic foot board has let me down badly. Cramps in the top of my thighs have been very difficult to shift. Had a step drop yesterday, sat straight down on my good foot then a couple of hours later i just collapsed on that leg standing talking to my daughter bless her she caught me! Been a bit knackered today probably lack of sleep, legs hurting or maybe just because i had the flu jab yesterday morning? Still off to Ireland for a few days at the end of the week see some family, god knows how ill get off the toilet lol...

willsandco
18th November 2014, 15:34
Bit like me in London last week! I had been standing far too long, we had to cross a busy main road, got into Central Hall, staggered up five steps. Then I looked at the next twelve steps and my legs just buckled and I dropped to the floor - in front of loads of VIPs and dignitaries! The good news is that they got me a wheelchair and put me in the lift. The even better news is that it increased awareness of MND no end! Joycie xx

boreham1
18th November 2014, 16:02
You have to block those cant do thoughts or your body just says no!

marieline
19th November 2014, 03:39
Hello CC, my avenging angel, i don't think that some people are comfortable with illness. I have always been the one people go to for all kind of help and they just cannot cope with it.

And no i didn't kick her butt in scrabble because she doesn't play. What happened on that day, was, i sent her ahead to do her stuff, and i concluded my chores quietly and went home. I can also be a real dragon, so no worries there CC.
I just hope i hold onto my zest for life CC.

Best wishes xxoo
Marieline

marieline
19th November 2014, 03:48
Dear Lynne,
Haha don't make me more than i am. Like everybody, i have down time, i allow myself to sink into if i so desire, but if i want to pick myself up, i find 5 things in my life that i am very grateful for . This always have a positive effect on the way i feel. The old folks were always wise in saying "count your blessings whenever we whinged about life". It took me a long time to put it in practice but it does the trick.

You are spot on. We have no control over much, except our thoughts, feelings and attitude. Perhaps we all need reminding every now and then.

Best wishes
Marieline

marieline
19th November 2014, 04:07
Hello Kelvin,

I don't think that there's been any blood letting on this forum. I used to live near Hyde park in WA and i have witnessed what a cat can do when it is able to surprise a flock of pigeon. It is mayhem and i am hoping we avoid that and save our energy and passion to tackle cramps and fasciculations (C & F).
Sounds like you suffer a different kind of cramps than i do and probably needed more specialist treatment. And great to hear that yours are under control. The cramps i have are quite mild compared to yours and they can be ignored or if i am not too lazy i hyper extend the part and hold for 1 minute or so and it's usually gone. I have never felt the need to address it with pain killers. Like you say by morning, one the stretches have been done, i am usually set and ready to start my day.

You are lucky to have someone to work on your legs, practiced daily i am certain that it will prevent spasm and contractures. Are you saying Kelvin that the cramps might be beneficial for muscles? I have wondered about that myself.
Keep posting Kelvin, because we all suffer C&F to some degree and it is good to hear that Quinine sulphate is working for you.

Best wishes
Marieline

marieline
19th November 2014, 04:20
Hello Boreham,

A vaccine can certain change the energy level, because your body to produce immunity must produce a flu like symptoms, though silent, but you can perceive achyness in the body and tiredness. Recently i believe, it may have been Joycie, who reported feeling crooked from her jab.
Take it easy a few days and it is not unusual that a leg fold under us. You may have to max up on food that gives you a good supply of magnesium, potassium and so on. I personally keep good magnesium supplement when i am heading off somewhere, and i also take along co Q 10, and multivitamin, anyway although my neurologist have told me that vitamins have no bearing on the condition, it makes me feel like i'm prepared and that i have covered my bases.

Have a fantastic Holiday in Ireland. I am heading off for a bit of beach fishing in 3 weeks. I am hoping that there will be plenty of fresh fish to eat in those 3 days.

Best wishes
Marieline

marieline
19th November 2014, 04:29
Haha Joycie,
That is great publicity for MND and you have been very busy lately being a celebrity. I like the attitude, you just get on with it. I tried to carry a whole bucket of water recently, a heavy one, my legs were not properly positioned for heavy lifting and i knew that something catastrophic was going to happen, but i didn't pause to review the action, and guess what after 4 steps, my right knee folded and i had to ungraciously drop the bucket before i myself fell down and got splashed. My legs certainly let me know if i'm abusing them.

Keep up the great awareness campaign.

Best wishes
Marieline

BlueEyesOhio
19th November 2014, 05:23
And eat your bananas!! I ate a 1/2 a banana today and thought marieline says bananas are GOOD for you.

Lynne

ccinjersey
19th November 2014, 12:57
Well I do love the Angels Marieline, always good to have them on your side, and if you can get an avenging angel even better !! :)

CCxoox

marieline
20th November 2014, 00:44
Yes Lynne, be a good girl and do as you are told. :) googling up minerals and the bits on potassium and how important it is at the cellular level, and bananas being one of the highest potassium food out there, make sense Lynne.

Keeping it simple
Marieline

fishmate12
20th November 2014, 01:54
Potassium is important for healthy nervous systems and regular heart rhythm. It helps to prevent stroke,
aids in proper muscle contraction, and works with sodium to control water balance in the body.
It helps to maintain cellular integrity. Potassium in the body is regulated by the kidneys and balanced through
excretion of urine.
Potassium works with sodium to regulate the bodys waste balance and normalize heart rhythms; aids in clear thinking
by sending oxygen to the brain; preserves proper alkalinity of body fluids;
stimulates the kidneys to eliminate poisonous body wastes; assists in reducing high blood pressure;
promotes healthy skin.
Deficiencies in potassium may result in acne, arrhythmia, cognitive impairment, constipation, depression,
ECG changes, edema, fatigue, glucose intolerance, low blood sugar, retarded growth, elevated blood cholesterol,
hypercholesterolemia, hyperreflexia, hypotension, low blood pressure, insomnia, muscle weakness, nervousness,
palpitations, polydipsea (thirsty), proteinuria, respiratory distress, salt retention (bloating),
tachycardia (rapid heart rate), xerosis, poor reflexes, mental apathy, nervous disorders, respiratory failure,
cardiac arrest, muscle damage.

Sources:
Spinach, Celery, Romaine lettuce, Parsley, Zucchini, Radishes, Loose-leaf lettuce, Cauliflower,
Winter and Summer squash, Tomato, Cucumber, Eggplant, Green beans, Sweet pepper, Carrots, Broccoli, Fish, meat,
dairy foods, fruit, poultry, whole grains, apricots, avocados, bananas, brewer's yeast, brown rice, dates, figs,
dried fruit, garlic, nuts, potatoes, wheat bran, yams.

Deficiency Signs or Symptoms:
Indications of a deficiency include dry skin, acne, chills, constipation, diarrhea, depression, nervousness,
excessive thirst, reduced growth, low blood pressure, muscular fatigue, arrhythmia, cognitive impairment,
ECG changes, edema, fatigue, glucose intolerance, low blood sugar, retarded growth, elevated blood cholesterol,
hypercholesterolemia (high cholesterol), hyperreflexia, hypotension, low blood pressure, insomnia, muscle weakness,
palpitations, polydipsea (thirsty), proteinuria, respiratory distress, salt retention (bloating),
tachycardia (rapid heart rate), xerosis, poor reflexes, mental apathy, nervous disorders, respiratory failure,
cardiac arrest, muscle damage.

marieline
20th November 2014, 02:55
Gosh man,
You sure do not keep any info out. Thanks Mr the radical researcher, i did say that if folks were interested to learn more about the stuff, that they could google it. And surprisingly enough, throughout the years i have placed a lot more emphasis on magnesium, perhaps because i consume so much potassium in my diet, but broaching on the subject is fantastic.

The point i was trying to make however was that all human being need potassium, but for us we need that extra dose. Bananas seems the ideal food to fit in a bag, as opposed to a bunch of spinach or 100 gm of lean chicken breast. But a small container of dried apricots, dates, seeds and nuts will work just as well, i usually do both.

Now Ray, you have scared everybody to ensure they eat their vegetables. Thank you for that comprehensive lecture. As you read most foods are rich in that mineral.

Best wishes
Marieline

BlueEyesOhio
20th November 2014, 05:16
Ray,
Just a wealth of knowledge you are!!

I will do as I am told and eat my bananas every day.

((((((((((((((((((((hugs)))))))))))))))))))))

Lynne

marieline
23rd November 2014, 05:41
Hello all,
In my experience with fasciculations, i have noticed marked aggravations following eating Chinese food. I am assuming that the high msg (mono sodium glutamate) content in the food will be the culprit. I also noticed that my muscles behave erratically when i am emotional, repressing my anger, fearful, anxious, stressing over things i can't control etc. I am presuming that those factors can independently influence my progression. The more happy and content i am, the longer the period of remission ( the fasciculations and cramps free period).
We are aware of the inflammatory, toxic component of particular areas of our brains. How can i manage the inflammation or assist and support my nervous system?
Well to keep it simple i try to stay away from chinese food, but i still eat out a lot, meaning that there will always be unwanted additives in the food i eat.

Food wise, in a general way, The vitamin B group maintain the day to day health of the nervous system. The B1, B2, B3 provide much morale, stamina, and real joy with which to tackle the small everyday hassles of daily living. We among most people will have even more smaller hassles than others to deal with. B4, B5 on the other hand look after the nerve supplies to the pancreas, skin, hair, different job but still linked with nerve function. B6 also called the "anti - spasm vitamin" are used for period pain, neuritis, neuralgia, for some type of vascular migraine, for illness like Parkinson's disease, spasticity and muscular wastage, so invaluable to us.

Although all B vitamins are equally important, i seemed to have fixated myself on B12 only. Well perhaps because all B vitamin are very abundant in most food. B12 is said to be the link between life and death of an organism. It "keys" the other B vitamins into action. Without it life is not possible. It is logical to assume that without abundant B12, the above mentioned functions e.g morale, joy , stamina, enthusiasm etc cannot be achieved. Choline, Folic Acid ( B9), Biotin (B7) are B group associates that are essential for the absorption and use of other group members.

B vitamins are easily found in most diet, in seeds, grains, legumes, molasses, yeast, wheatgerm, dairy products, mushroom, strawberries and more. Most of our dietary sources of B vitamins will be found in porridges, bread, cakes, biscuits, rice, bean, legumes, vegetarian dishes, meat, liver.

Vit B12 and Folate both come out as the masters of all B vitamin because they are essential for the absorption, metabolism and action of the other B vitamins. The end result of which is the protection of the nervous system. I have never personally taken folate as a supplement, although while writing this, i realised that it wouldn't have hurt. On the other hand i have had B12 injections every 3 months since 2007 or so. This has been a consistency, has it been beneficial?

I can now see how i can include B6 and folate as part of my daily supplement. This is just a view point based on a personal observation infused with a few facts, certainly a basis for further debate.
I would love to hear your bits.
Best wishes
Marieline

Trevorhb
23rd November 2014, 11:34
It is interesting how some drugs have a unexpected side effect. I have atropine drops to help control drooling. I have had a irregular heart beat for some years, since taking atropine it has become steady.

marieline
23rd November 2014, 13:52
Hi Trevor, it seems that in your case atropine has had a beneficial effect. I suppose you won't know until you give it a try. Take care
Marieline

BlueEyesOhio
24th November 2014, 03:54
Marieline,
You are a wealth of knowledge like Ray (Fishmate). This thread is great!! Keep it coming!!

(((((((((((((((hugs))))))))))))))))))

Lynne

marieline
25th November 2014, 01:58
Hello Lynne,
I am just preparing myself for 2015, new approach to how i deal with the illness. Try and eat my medicine and keep my body as fit and healthy as i possibly can and see. After so long i am just sick and tired of being a sick person, i want 1 year off.
As you can see by reviewing what i've been doing during the course of my time with MND, i can now see what i can improve with vitamins or just whole food or fortified food.
Ray is certainly a wealth of knowledge, however i choose to eat my medicine while i can still eat. You probably already made your deduction s, that the more raw food we eat, the more plant food, seeds, grains, nuts the better we might be coping with this illness.
I will give my take on alkaline and acidic food soon. I have been questioning the influence of the high acidity of the Western diet (we tend to eat large portion of meat, processed as opposed to the no meat or small portions of meat of a Japanese or Indian diet for example). The aim will be at looking for new ways to eat to help control the inflammation. Probably not many suffer from debilitating pain periodically, that often need to be reversed by anti - inflammatory drugs, i use diclofenac which usually help. Of course there are other pain like the groin pain related to the increased limb spasticity, i suffer from it if i walked long distance, My Neurologist advised some injection for that one, though i will probably not consider it.
I know that folks who have PEG can equally eat whatever they want. I know folks here in Oz who have their daily glass of wine, the occasional pint down the peg. The dietician will be the best support on this topic. But But when i am eating mostly eggs, fruits, veges, legumes and nuts, i suffer less from the fibromyalgic like pain and the inflammation that i perceive to be localised in the base of my brain. I believe that some of it is to do with balancing the PH of the body fluid.
Have my B12 jab today and an acupuncture session, my one consistency.
Take care
Marieline

fishmate12
25th November 2014, 02:41
Hi Marie,
You're a greater wealth of knowledge than me,..i know nothing compared to you,..i'm just a "hoper"..with a good chance.
Eating your medicine,...everything starts in your Gut,...that's where your MND started it's journey.
Your Gut Flora didn't stop some kind of invader,,..which went on to manifest.
Your new outlook,...start helping your Gut,...it has to deal with everything you swallow...your Immune System starts in there,....it's your body's Defense System.
By the way Sheila,...who recommended you take Folate, months ago,,,to enhance the uptake of B12???

Rrrrr xx

BlueEyesOhio
25th November 2014, 04:54
Evenin,
I just ate my 1/2 of a banana, almonds, crisps and a cup of tea. Weird combination I know. It's my bedtime snack. Hubby is great about making me snacks.

I have heard about the acid/alkaline thing. I have the strips to test for that. I haven't really thought much about that since my diagnosis. I guess I should pay more attention to it.

You're in Oz? Curious, I'm in Ohio.


(((((((((((((((hugs))))))))))))))))))))

Lynne

marieline
26th November 2014, 02:50
hello Ray,
You would have noticed that by now, this Sheila, rarely does what she's told. She need to figure it out for herself. We are talking food remember and i am a cow, eat plenty of grassy food, all abundant in folate, but through reading i could see how a bit extra folate couldn't have hurt.
I know that you have extensively talked about everything that i am revisiting on this thread. Repetition is good sometimes don't you think? You pop them, i eat them, that's where we differ.
Talking of your recommendations, i trialled out "colostrum", Taking half the dose that is recommended on the bottle. Anyway in the 4 months i have astonishing results in term of muscle growth, could be some influence of my very high potassium diet and keeping active. However my muscles have gone crazy with fasciculations and cramps since i started. I was joking to a friend yesterday, how the colustrum is giving me all these muscles, but i am so spastic that i can't really use them, don't you just admire "MND" :), that's it's probably giggling at my expense. There are definitely a lot of activities in my lower limbs, nerves activities.
I am not discouraged at all, now i have increased pyridoxine (B6) and might increase cur cumin (i eat it) and see. I will keep you posted on that one.
Why would you say that you know nothing? value your knowledge because you have a lot to share, but you cannot spoon feed adults. That is why you experienced so much frustration. Your need to help is so great that you went all paternalistic on us. People will try out new things when it make sense to them. Colustrum sounded like a better choice than whey powder at the time so i made my choice, but in my search i recently came across an ALKALINE BCAA product here, that i can try in lieu of Whey protein.
Sometimes it takes a bit of looking, but if i am thinking about it, someone would have already thought about it before me and produced it.

Best wishes and thank you for your wealth of knowledge
Marieline

marieline
26th November 2014, 03:09
Hello Lynne,
:) welcome to the club. My bedtime snack is a huge banana, and apparently if you scrape the inside of the skin, there are extra benefits. If you eat your nuts (alkaline ones are walnuts, brazil nuts), raisins are favoured over sultanas, pears fresh, dried, canned maintain it's alkalinity, if you feel like balancing out a large consumption of acidic food. Make sure that walnuts, raisins are included in your nut, seed and dried fruit mix.
Bananas are not alkaline food per say but it is full of potassium and potassium is alkaline. It is common knowledge these days that if we tend to stay on the acidic side, we are prone to more inflammation than our vegan or vegetarian counterpart. And MND sufferers all have some inflammation going on, probably why some of the protocol for treatment used to involve daily "acne" antibiotic, i am not sure about the exact name, could have been in the tetracycline family. Wonder if that made a difference.
Anyway are you a lucky Sheila to have a hubby who prepares you awesome bedtime snacks. I usually add a magnesium capsule to my bananas, both are alkaline by the way. If you do a bit of reading you will discover that each alkaline mineral pair up with an acid one. e.g.. Sodium chloride / potassium; phosphate / magnesium and so on. And they are most likely to be found in the same food, natures gift to us i believe.
Yes from Oz to Ohio. Also currently it's the mango season over here and mangoes have extra potassium, makes for good bowel movement too. :)
Best wishes
Marieline

Clive
26th November 2014, 14:59
Marieline
The pH, acid-alkaline, hydrogen ion concentration, of your body is controlled by internal buffers The pH of blood is 7.35-7.45, if your blood is normal don't worry about diet, you cannot change pH with diet

marieline
27th November 2014, 03:39
Marieline
The pH, acid-alkaline, hydrogen ion concentration, of your body is controlled by internal buffers The pH of blood is 7.35-7.45, if your blood is normal don't worry about diet, you cannot change pH with diet
Hello Clive,
I may have tried to simplify that one too much. i would agree that to be the case for all living things, provided there are no diseases such as lung obstructive diseases, diabetes (uncontrolled), kidney disease, and many others. When i am a fit active, healthy, eating a well balanced diet, where my kidneys and lungs are performing at their optimum, the Carbonic Acid - Bicarbonate blood buffer system will do just fine. We both know that with MND it is not always the case. I was not trying to get into biochemistry here, but i seems to be sinking into it.
I will have to defer on that one now, because i have personally experienced the difference when i balanced out what i eat, my cells are a lot happier when i eat high acid forming foods in moderation.
I cannot go into biochemistry Clive, but i believe that the lungs play the biggest role in maintaining blood PH by breathing out co2 and the blood with the Carbonic Acid Bicarbonate buffer system and the kidneys of course. Anyway you are right, and can you say for certain that our organs function to their optimum level?
An alkaline diet is based on the BELIEF THAT CERTAIN FOODS CAN AFFECT AND INFLUENCE THE PH OF BODY FLUID.
I don't see how eating better food can hurt me, anyway the relationship between diet and acid base homeostasis has been studied for decades and have been used by many before me and i have been trying to slowly implement it, mostly to tackle the muscle aches and pain, in lieu of taking anti - inflammatory medications, but that i am consuming whole food is an added bonus in itself.
Just another fad diet? unless i try i would never know, and also it is cost effective and comes with no side effects and i feel healthy.
There would be plenty to read on this subject on the net if you guys are into facts, to revisit those early biology lessons.

Best wishes
Marieline

BlueEyesOhio
27th November 2014, 03:50
Well done, Marieline!!

boreham1
1st December 2014, 21:51
Hello Boreham,

A vaccine can certain change the energy level, because your body to produce immunity must produce a flu like symptoms, though silent, but you can perceive achyness in the body and tiredness. Recently i believe, it may have been Joycie, who reported feeling crooked from her jab.
Take it easy a few days and it is not unusual that a leg fold under us. You may have to max up on food that gives you a good supply of magnesium, potassium and so on. I personally keep good magnesium supplement when i am heading off somewhere, and i also take along co Q 10, and multivitamin, anyway although my neurologist have told me that vitamins have no bearing on the condition, it makes me feel like i'm prepared and that i have covered my bases.

Have a fantastic Holiday in Ireland. I am heading off for a bit of beach fishing in 3 weeks. I am hoping that there will be plenty of fresh fish to eat in those 3 days.

Best wishes
Marieline

Great time in Templemoore, Ireland, 27 of us for dinner in a restaurant one night. I got pushed to and from the various bars and restaurants. Even with lucky legs i managed a couple of hours round the pool table and no falls! New additions to where we stay a stair rail and a handle by the toilet, result! I managed to stay relatively sober mixing wine with buds and even a few Guinness one night. That's a first as my wife has seven cousins ! I have a friend in Perth whose always posting big sea fish pictures on Facebook! (Paul Bruntlet aka Yorkie, I think he's some kind of Hell's angel now lol) Hope Your fishing went well
Colin.

marieline
2nd December 2014, 01:53
Hello Colin,
Sounds like it was a great reunion. You managed really well mixing so many drinks. My experience since MND is that my 1 regular beer goes straight to my brain, and then the legs get all stiff.
One leg fold does not mean the end of the road. Yes the hand rails make a big difference, meaning that you will remain mobile a lot longer. All i can say is, do not quit walking altogether.
I heard that WA have great fishing spots, but unfortunately i can't do rock fishing anymore, too unsteady on the legs. I will content myself with a bit of tamed beach fishing, hopefully will catch a few whitings.
I have planned pan fried fish and my special home made chips and mushy peas :) and a very cold beer.

Best wishes
Marieline

boreham1
2nd December 2014, 22:15
I like the idea of beach walking if i fall not too much damage. I'm thinking of the top left of Corfu to get some sun apparently its good for making vitamin D. I wonder if i can claim it on the NHS or perhaps the MNDA would like to run a clinical trial on how much sun and sea it takes to get some improvement HA!
Colin.

willsandco
2nd December 2014, 22:47
Corfu sounds lush, Colin. All we need is some holiday insurance company who doesn't flap to high heaven and charge exorbitant prices for overseas travel when you tap in MND. We had so many happy holidays in Greece, my idea of heaven! Joycie x

marieline
3rd December 2014, 02:02
Hello Colin,
You only need 15 minutes of exposure in the sun for that daily dose of Vit D. Here in Western Australia we have too much sun and sand, but Corfu sounds like the dream destination. I tried to get insurance a few times but when i key in MND, i never get a quote or a reply back. I don't believe MND is in the database of travel insurance yet. So i always have to be ultra careful when abroad. But i certainly do not allow travel insurance to deter me.
Although i am looking forward to the beach and fishing, it's the long drives that that i am looking forward to. My destination is Albany, nearly 800 km away.
Best wishes
Marieline

fishmate12
3rd December 2014, 02:06
Colin,..be careful at the water's edge, when walking along the beach...
https://www.dropbox.com/s/969urmuudd97wf7/KillerWhale.wmv?dl=0

marieline
3rd December 2014, 02:32
Hello all,
I took the liberty of compiling a vitamin and mineral lists. I should get a life, find something exciting to do. The reason why i did it was to find how many foods reappear in the lists.
The top peak nutritious food are in no particular order: peas, beans, soybeans; the livers of animals and fish; dairy products; eggs; molasses; wheatgerm; kelp; bran; Fruits: apples, melons, berries, citrus fruits, bananas, pineapple, avocado; all vegetables, salad vegetables, Parsley, dandelion, fenugreek; nuts, seeds, grains; others cold pressed - olive oil, coconut oil, seed oil.
The idea of the Nutri - bullet is making more sense, when cooking for 1 everyday, a great way to get down my minerals and vitamins in a drink. That is definitely going on the new years resolution.
I dare you guys to join me on that one. :)
best wishes
Marieline

marieline
3rd December 2014, 02:33
haha Ray, party pooper!

marieline
4th December 2014, 01:05
You are probably wondering where i am going with this thread. asking why i am talking about food when many cannot eat a normal diet and knowing that food alone cannot remove such a serious condition.
On top of the fasciculations and cramps that seemed to be consistent with MND, we all have in common a body complete with organs and tissues that need to function to their best in order to ease the body from the demand of MND progression.
Yes MND is a progressive illness and unless reversed or cured, we will all have to cope with the changes at one time or another and the body to face enormous stress.
Food has to be absorbed for us to receive the full benefit of it. If our gut is clogged up, no matter how much goodness we are eating, it is mostly wasted. When did you last weed your gut? Yes we all may need the worm tablets. When did you last clean your gut? the good old aloe vera juice with the psyllium husk for a week or 2 usually show a difference. After which you need to seed the gut, probiotic, Yakult, yoghurt are all good. And finally you can feed using the fresh carrot, apple, beetroot garlic juice to start with my favourite. But please add a few drops of olive oil, grape seed oil, to maximise the absorption of the fat soluble vitamin contained in the veges.
On the fasciculation and cramp front, i had my B12 on the 25th of November, the out of control fasciculations and cramps that i was experiencing throughout November have now gone to a sporadic faint whisper. Which is telling me that i will have to bring the injections to every 2 months. Even the excess activities in the brain (inflammation, congestion, pain, toxic feeling) that are usually present when my muscles are going berserk, eases. On the safety front, there is no reported cases of B12 toxicity, so it is relatively safe.
Best wishes
Marieline

boreham1
7th December 2014, 19:39
Colin,..be careful at the water's edge, when walking along the beach...
https://www.dropbox.com/s/969urmuudd97wf7/KillerWhale.wmv?dl=0

Thanks for that lol. I don't think i can out run the surf any more let alone those bad boys !!

boreham1
7th December 2014, 19:43
My B12 was down but not bad so they put me on a course of injections but i had no improvements but i did get a lot of spots!

marieline
8th December 2014, 04:01
My B12 was down but not bad so they put me on a course of injections but i had no improvements but i did get a lot of spots!

Ouch, Sorry to hear that Colin. Spots are usually associated to the younger group (teenagers). You may have to discuss that one with your doctor.
There has been many trials with B12, particular in Japan. B12 in itself will not reverse the damage, so if you are expecting a cure, you may get a little disappointment.
B12 is in my opinion needed in our situation as we suffer from a neuro degeneration. Until we know the cause we cannot really say that we can cure MND, but understanding the body mechanism, we can support it.
B12 is needed for the spinal cord and the brain to function properly. B12 help signals between nerve cells to travel quicker and keeps the signal to loosing it's strength. B12 also plays a role in the production of neurotransmitters hence it's role in neural communication.
In my view we cannot rely on our dietary B12 alone if we want to support the brain. Again only my reasoning, i have been on B12, in the beginning it was every 2nd week for 6 months then every 2 months, but now every 3 months.
B12 in my opinion, again, i am no biochemist, no researcher, plays some role the prevention of glutamate cytotoxicity. Read research papers online. Anyway research done in Japan, on rats brain, not human, indicates that CHRONIC exposure to methylcobalamin B12 protects cortical neurones NMDA receptors mediated glutamate cytotoxicity.
I read this 8 or 9 yrs ago, that was enough information for me. My Doctor thought it was better than nothing so it became part of the management plan.
Best wishes
Marieline

fishmate12
13th December 2014, 00:05
Hi Marie,
This one's right up your street,..you'll identify with this one,..
http://www.naturallifeenergy.com/alkaline-producing-mucus-reducing-nutrional-guide/
Take care,
Ray

marieline
15th December 2014, 06:29
Thank you Ray,
I realised earlier on while trying to compile a blood group/ alkaline diet food list the list was quite limiting. There are a lot more food items included on your link.
It is a perfect christmas present, thank you very much, as i start implementing my new regime on the new year. :) i am waiting for the boxing day sale to get my Nutri - bullet.
Best wishes
Marieline

marieline
17th December 2014, 09:42
I was only now reading an interesting paper "micronutrients and cognitive function". Well you may wonder what has that got to do with MND, but the bit on the consequences of select micronutrient deficiencies is very pertinent to us. It provide us with a brush up on our earlier biological class. Interesting read for the keen and avid readers.

http://lpi.oregonstate.edu/ss11/cognitive.html

Best wishes
Marieline

marieline
24th December 2014, 03:39
Hello all,
My motto is when you are not sure , when in doubt stick with the familiar. Unless you've had a live blood analysis, or hair analysis, you can't seriously implement stick to 1 treatment protocol. Just my view. I believe our radical researcher is wise to try many things. I still haven't done either tests, although it would be a reasonable step to take in 2015.
We can repress every symptoms that arise, not realising that we are blocking essential, vital functions, pathways. We can follow in the footsteps of our radical researcher, who take steps to assist his systems with those pathways.
By now we know that we all have suffered some gene damage. We can all assume that something caused it, hereditary? . We all functioned fine until a major stressor caused irreversible changes and damage to the CNS.
My question is if the causes and stressors once removed can we restore the pathways? after all we were functional with the faulty gene. To what extent will the body go to restore balance and functions if it is given all the support it needs?.
I am theorising i know. The CNS is still a vast black hole. Neuroplasticity has been proven now, but where does it fit in the rewiring of MND brains?
This brings me back to the basic, keep the body as healthy as possible. One can never stress enough that if you have a blocked, leaky gut, no matter how well you eat nutritiously, your body may be starving itself.
Sulphur - yes that smelly stuff. You can find it in abundance in avocados, celery, cucumber, meats, mushrooms, all the onion family, bitter tasting vegetables such as turnip, spinach, asparagus, radishes, horseradish, brussel sprouts.
It partners iron, sodium, and calcium and it works as a fumigator, it purifies and it cleanse the bowel to eliminate much of the bad air from the body. Yes it makes you fart, smelly ones.
Sulphur in food form helps to normalise the helpful bacteria in the small intestine and the bowel so that food residues do not putrefy before excretion. In the liver in the form of sodium sulphate it regulate bile flow and liver enzymes.
Sulphur needing people is windy, stomach rumbling, bowel producing antisocial gases. Increasing sulphur rich food in your diet will initially cause rumbling, more wind, until your body gets it's balance established with sodium, calcium and iron.

Best wishes
Marieline

marieline
3rd January 2015, 08:27
2015 sees me once again. Now it is time to take stock and reevaluate. This year i have decided to take a sabbatical from being a sick person, Yes i have done it before. I will try to put in place a a healthy lifestyle and stick to it for 1 year and see how omitting Neurologist appointment, and any other appointment to do with MND affect my psychology. I was starting to feel impatient with myself in 2014, calling myself a hypochondriac. This year i chose to live a little but is certainly not going to overindulge in fast food. In fact you will be surprised to find out that when you have a healthy digestive system, you do not crave fast food, sugar or salt. My first item to let go of was dairy product. I stopped buying milk 2 weeks ago, but will continue to eat moderate amount of white cheese and some ice cream (my favourite Maggie Beer Burnt fig caramel ice cream). The second item of my list is to have a hair analysis, about time i do things right and maybe a live blood analysis to follow. My protocol continues to focus on diet packed with minerals, vitamins and leaning on the alkaline side. Supplements of B12 injection will remain unchanged every 3 months, but i have added folic acid, B6 to my on and off combo of Vit D3, Zinc, Magnesium, Multivitamins (woman 50+), Vit C, homeopathics (yes i believe in homeopathy, did you know that it is actually older than modern medicine?).
I have been been taking colostrum since June 2014 with awesome result, even my physical therapist has commented on the change in my muscles mass. Although spasticity has increased, i am still thinking about adding Baclofen to my list because the long list of side effects terrifies me.
It is easy to be gripped by discouragement, but each day that we have is a day won in this battle. I sets myself 2 goals for the year and if by the end of the year, i've achieved them, i am motivated to start the next year over again with same goals or new goals. I choose to play the cards that i've been dealt with rather than loose my energy feeling sorry for myself. At the end of the day, it is my life and there is no one more equipped than myself to live it.
Lets all be resolved to make the most of this year, lets not allow frustration, fear of loosing control, take away our humanity. We may think different, after all we should because we are all different, but one thing hold us together and that is why we are on this forum, let us try to be mindful and not take things so seriously.
My very best wishes
Happy new year 2015
Marieline

BlueEyesOhio
4th January 2015, 05:38
Well done you!!! What a great attitude! It's our outlook that can see us through

" I choose to play the cards that i've been dealt with rather than loose my energy feeling sorry for myself. At the end of the day, it is my life and there is no one more equipped than myself to live it. " Marieline


(Hugs)


Lynne

marieline
2nd February 2015, 05:46
Hello all,
The month of January is finally over and with this marks the end of the summer of tennis. Yesterday i watched the fierce battle between a mighty Scot who represented England and an unbeatable Serbian warrior. But i assure you if one is able to play at that level he is a champion. I am finally back among the living and can now take stock of all that i have missed.
In 2 weeks time i am heading overseas to challenge myself that little bit more, to clear my thoughts and recharge. I will have something new to share on my return.
"No one is defeated until defeat is accepted as a reality"
Best wishes
Marieline

BlueEyesOhio
3rd February 2015, 04:54
Marieline,
Where are you going? I have missed you posting.

Lynne

marieline
4th February 2015, 02:07
Hello Lynne,
I hope it's not too cold, over here we are having at least 3 electrical storms in a day. Amazingly beautiful to watch at night but scary during the day.
I am heading off to Mauritius for a month, i bought a walker (duo rollator). I have tried it out twice, so should be fun to go to the beach without getting bogged in the sand. I am intending to walk in the shallows with it, hope the salt water will not be too damaging.
This year i am even more determined to maintain my mobility and independence. I am convinced of the capacity for ALL BRAINS to form new connections. I want to continue on proving this in 2015, through my will, determination and endless hard work. No one ever said that it was going to be easy :) The reward is, i continue to live alone and is 100% in charge of my day to day living.
I will be more organised in my thoughts as to how i want to take my post. I remain committed to neuroplasticity, nutrition and some supplements in the day to day management of MND.
Best wishes
Marieline

marieline
4th February 2015, 06:36
For those like me who love to read about the Brain and it's mysteries, Norman Doidge MD has just released a new book, titled " THE BRAINS WAY OF HEALING". IT'S ONLY JUST BEEN RELEASED, SO HAVE NOT HAD TIME TO BUY IT. His other book "the brain that changes itself" also addresses NEUROPLASTICITY and is worth a scan. I keep pinpointing to this because this is our only available tool to keep our day to day life as functional as possible and it is free. If you do read it, please leave your views here. I cannot wait to return so that i can order it.

Cheers
Marieline

marieline
15th February 2015, 04:29
One last post before my trip.
Hello all, I was recently putting my place in order, viewing how many planes have disappeared from the sky, one can't leave anything to chance :) anyway like with diseases and health we have no control over what diseases we will suffer. These are predetermined by our ancestors, environment, mental, psychological make up, socio economic and life style and the list can go on. We cannot choose which diseases we are predisposed to, but if we knew which diseases we are prone to, we can prevent minimise by targeting the mentioned factors.
While sorting through stuffs (personal of course), i was reading through my earlier diary recordings of my beginning symptoms. Definitely those of progressive bulbar palsy. tongue paralysed, drooling, jaw easily tired. swallowing difficult, choking on spittle.
These symptoms occurs as a result of a weakening of the facial muscle and the throat muscle. What i did differently from any of you on the forum was that i struggled through the tough time and did not take can't NO for an answer. I found out that what i did has a name. It is a therapy called "constraint induced movement therapy". At the time i did it because i was a coward, i was afraid of a laryngectomy, or PEG or simply being hospitalised, yes i have never spent time in hospital and the idea of it ever happening terrifies me.
Neuroplasticity has got a place in the day to day management of MND. Fasciculations. Now there is one symptom that has caught my attention very early in the disease. My symptoms started in the face, neck. Fasciculations appeared in the face and neck. I know that we have divided opinion on that one, but nearly everywhere there has been fasciculations, i have always experienced some form of compensations, i am not talking full recovery of motor function, but enough compensation for me to function at a reasonable and safe level.
Weakening muscles is usually followed by Lots of cramps in an area, and almost always fasciculations follow. So if we take the time to observe there is a pattern and like all activities orchestrated by the human body, all symptoms are usually attempts to restore function, or bring balance. My conclusion is that as long as there are cramps and fasciculations it is a healthy sign that the motor nerves are still trying to maintain normal function and to me they are positive signs.
Controversial, perhaps , there's been enough years of information to support this opinion.
What is your thoughts on this. I know i keep on coming back to these symptoms but other than than the pain and discomfort, i haven't found them to be damaging to my already weakened muscles, rather the opposite when constrained induced movement therapy is continuously practised.
Best wishes
Marieline

Breadnjam
15th February 2015, 10:15
Enjoy your trip, have fun...hear from you when you get back.
Love Jam

Trevorhb
22nd March 2015, 14:26
Fasciculations used to occur anywhere, arms, legs, chest, you name it. Recently I have noticed they have stopped, does this mean the nerves are now all dead?

DaiTheDragon
22nd March 2015, 17:54
I thought the Fasciculations had stopped upper body but last time I saw the neurologist she said they were still going but I had got used to them and didn't notice anymore

pacer1971
22nd March 2015, 18:00
Hello Trevor
If you can use the muscles or have feeling in them they should not be dead.try flexing them ,as your bulbar, I thought you kept most of your limbs working. It was mainly US guys with limb onset which lost mobility.
Cheers
Darryl

Terry
22nd March 2015, 18:02
I don't know Trevor;

But I too am told that I have them in my legs, without me noticing.

marieline
27th March 2015, 01:57
Hello all, :) hope you have been good. I am back from holidays. As always my time was short not without drama. I fell on my tailbone on the first day, still cannot sit long on my arse for long period. Well, because i was determined to do things this time and turned on the stoic button, i :) cooked for the dogs.
Still had to suffer agonising pain for the first 2 weeks. Thank God for the puppies. They kept me sane and happy. By the time i was able to adventure outdoors it started raining, though it was humid and warm. My relatives who are all involved with the land for the cultivation of onion, garlic, beans etc for their own consumption, loved it that i came, apparently i always brought rain to the Island.
To get to the beach i had to get a 4x4 cab to reverse in my muddy lane. It didn't matter that it was cloudy and wet and that it was low tide. I was determined to walk in the ocean and i did. Pity it was just the once. The same cab had to be called to drive me to the airport.
The upgrade to business was worth every penny. The long 8 hours in transit was spent lounging on a couch reading magazines, being served endless cups of herbal teas. it was a stressless holiday, if you don't count the fall. I have come to the realisation that the falls keep me grounded and sensible, imagine what i would have done otherwise.
If you are thinking or planning to go on holidays, please if you feel that you can do it, do not hesitate, if it is what you desire for yourself, the universe always conspire to assist.
Best wishes xx
Marieline

marieline
27th March 2015, 02:09
Fasciculations used to occur anywhere, arms, legs, chest, you name it. Recently I have noticed they have stopped, does this mean the nerves are now all dead?


Hello trevor,
From the answer i received from my neurologist. Fasciculations are attempts of the motor nerves to reconnect. Sometimes there are periods free of fasciculations or they are very mild, or your attention is occupied elsewhere. That is why we mostly noticed them when we are resting at night. Although in some large muscles we can visibly see them and therefore feel them anytime.
If you pay attention, you will also noticed that fasciculations will remain in a muscles for a few days, then disappear then might returned again.
Like Darryl says, do not focus so much on them, focus on the part, it's strength, make sure that you keep working it, using it. The aim is to maintain function.
I spend many years fearing fasciculations and cramps, not anymore. I see them as the sneezing and eye watering that come with hay fever. stretch, massage, magnesium or whatever your doctor supply is all you can do, UNLESS the condition is reversed.
Best wishes xx
Marieline

pete
27th March 2015, 09:32
Hello all, :) hope you have been good. I am back from holidays. As always my time was short not without drama. I fell on my tailbone on the first day, still cannot sit long on my arse for long period. Well, because i was determined to do things this time and turned on the stoic button, i :) cooked for the dogs.
Still had to suffer agonising pain for the first 2 weeks. Thank God for the puppies. They kept me sane and happy. By the time i was able to adventure outdoors it started raining, though it was humid and warm. My relatives who are all involved with the land for the cultivation of onion, garlic, beans etc for their own consumption, loved it that i came, apparently i always brought rain to the Island.
To get to the beach i had to get a 4x4 cab to reverse in my muddy lane. It didn't matter that it was cloudy and wet and that it was low tide. I was determined to walk in the ocean and i did. Pity it was just the once. The same cab had to be called to drive me to the airport.
The upgrade to business was worth every penny. The long 8 hours in transit was spent lounging on a couch reading magazines, being served endless cups of herbal teas. it was a stressless holiday, if you don't count the fall. I have come to the realisation that the falls keep me grounded and sensible, imagine what i would have done otherwise.
If you are thinking or planning to go on holidays, please if you feel that you can do it, do not hesitate, if it is what you desire for yourself, the universe always conspire to assist.
Best wishes xx
Marieline

Hi Marieline ,
Good to have you back with us, I hope the rear end is feeling better, and hope the holiday went well other than the fall, my wife did much the same many years ago and she suffered for quite a while, even worse for us having reduced mobility, anyway just wanted to welcome you back.
Pete
X

marieline
29th March 2015, 08:22
Thanks Pete, I am glad to be back too! It feels like homecoming, funny how strong connections can be even if virtual. Tailbone injuries are quite slow to heal and in my case it was not my first fracture on that particular spot, this one seems a bit resistant and is still causing me some pain. I'm giving it one more week and then might have to go do an x-ray and see a osteopath. In my experience their ministrations have been the only modality that helped long term along with homeopathy. I still prefer to steer clear of pharmaceuticals.
Thanks xx
Marieline

marieline
13th April 2015, 04:32
Hello all,
psychobabble? perhaps! How much effect does making an illness such as MND our main focus in our consciousness, in our psyche? Many of us have felt the need to take a break from the forum or from self to something lighter, brighter.
I myself took off for 3 years after i received the diagnosis in 2006. I had no contact with Neurologist, just went off to complete the tasks that i had always planned on doing. During those 3 years i saw a private speech pathologist, a Alexander technic teacher, the dentist to remove the root canal tooth, my holistic doctor weekly for chiropractic, acupuncture, crystal therapy and fortnightly B12 injection in the first year. On my front i was walking 3 kms everyday, attending the gym 3 times a week, had a sauna membership, was doing at least 2 saunas a week and i was also getting up at 3am in the morning to attend the first hot yoga class. I was not thinking about MND but i'd filled my life with so much activities that MND did not even come in the equation. In the meantime i was relearning how to chew, how to swallow, basically how to eat.
On the 20th of february this year (my birthday present) i fell, did some damage to my tailbone. For those of you who have some medical knowledge, it is an agonising pain, that only strong analgesic can relieve, however i did not want to cause unnecessary stress to the family and didn't even tell them, but one cannot hide this kind of pain for long. My entire legs were swollen by the 4th day because i had to sit for hours visiting with relatives. By the end of that week both my legs were on fire, i assumed it's peripheral neuritis brought along by the combination of injury and MND. The only relief was to have a fan blowing on my legs 24hrs a day. Life was difficult, but i didn't talk about it, just hoping that luck was on my side and that my body will be strong enough to heal itself, like it normally does. All i can do is assist with my vitamins B6, multivitamin, B12, Zinc, Folic acid and Colostrum.
6weeks along the road my entire legs are now shedding skins, it is not pleasant to watch but i have never been so happy to see dead skins in my life, sitting is back to comfortable, no sensation of having chilly under my skin, no pins and needles, no numbness (touching wood) and having experienced the other extreme, i can now appreciate all the little things and i can't help feeling very blessed.
I believe that once we make an illness become part of our consciousness it is a lot harder for the body to align itself to heal itself. I realised that MND is a different bowl of fish altogether but focussing on every single symptoms with fear can only bring our awareness on these symptoms. I understand the importance of venting BUT! What if we share MORE hopes rather than despair? share triumphs rather than tribulations? Share tips that have worked for us rather than those that haven't worked for us. Sometimes somethings/symptoms are just their unique to each and everyone of us and if we seek within for answers they are their for us to see. And if we want to share those experiences with others then we will be able able to empower ourselves and each other even more.
I wish all good mental health, best wishes
Marieline xx

willsandco
13th April 2015, 11:07
Hello, marieline. So pleased you are home and that the pain is dissipating. This is really a reply to Darryl (Pacer1971) in response to his reply to Trevor. A lot of people think that bulbar MND is restricted to the muscles around the throat and mouth. But it does sometimes affect the legs - I wish it wasn't so! I was diagnosed 13 months ago but, over the last six months, my mobility has become severely diminished. I can't stand for long, can't walk far, can't bend down, can't reach for things and the muscles in my legs are becoming decidedly wasted. Have got wheelchair, scooter, rollator, bed inserts, wet room, bio bidet...the list goes on. I definitely have bulbar onset - what a strange disease this MNDA is! Much love. Joycie.

marieline
13th April 2015, 11:46
Hello Joycie, i see that you are prepared like the organised and capable woman you are. Comfort is necessary. I personally do not like to use that word "Can't". I usually say to friends that i am going to be very slow but they shouldn't help unless i ask. I like the idea of the bio Bidet :) perhaps i will allow myself be tempted too. Much love Marieline

willsandco
13th April 2015, 12:24
Marieline, the bio bidet is wonderful when you cant manage the normal cleaning functions yourself. I don't use that part of it at all, that is for the future - but I will tell you that there is a queue of ladies at my wet room door because the seat is heated! Ha! Ha!
I am Miss Independent personified - always was! Thought nothing about getting in the car and driving to the top of Scotland to friends, or across to Europe. Those days are gone now because Peter worries that, if I am in an accident or a breakdown, I cant talk and I can only stand if I hold on to the side of the car! Nonsense! I have a phone, and laminates, and a magic stick and a rollator - and my feminine guile!. I am not giving up driving till I lose my legs! No way Jose! You just cant keep us good gals down! Much love Joycie xx

marieline
14th April 2015, 06:44
Hello Joycie,
I don't think you should stop either. I can't drive anymore because i allow my driver's licence to lapse for too long, and since i no longer have a car i don't see the point of going for another drivers test. How i miss driving! These days i have settled into the Taxi routine, i do not let that ground me, and sometimes friends take me on long drives. You would be surprised how empowering doing things on your own can be. With a husband by your side surely the sky should be the limit. Go for it girl Enjoy what you can still do and be patient with yourself when you can't be superwoman anymore. I have found out that i am less accident prone now that i have accepted my limitations and try to be patient with myself. And i am less frustrated and a lot happier too.
Yes The bio bidet sounds nice, will put it on my wish list :) Best wishes xxoo

willsandco
14th April 2015, 10:44
I think we both should get a bottle, breathe in it, and on any days which are not quite so good, open it up and take a whiff of our positivity. Your posts are always good. That last one encapsulates everything I believe in. I have to believe that MND isn't going to ground me and make me housebound! I have Peter with me, as you say. The sky is the limit! Good for you, Marieline! Much love Joycie xx

Breadnjam
14th April 2015, 12:26
Mariline, I'm sure MNDWA will help you out with a bidet seat, they are so eager to help.
Love Jam

marieline
15th April 2015, 02:12
Thanks Jam for mentioning , :) you are talking to a little independent madam here. It is no emergency and like Joycie says, :) i am still able to keep the rear end clean and certainly will derive more enjoyment out of it if i chose it and buy it for myself when the time is right. Just love the idea of the warm seat cover, with winter approaching.
Best wishes Marieline

marieline
15th April 2015, 02:15
Yes Joycie, we can visualise that imaginary bottle whenever we get ourselves in trouble. Best wishes to you xx Marieline

marieline
21st May 2015, 05:23
hello forumites,
I just read a book on coconut oil, how to use it, it's virtues etc. Wow this is great stuff. for those of you, who have never tried coconut oil, the extra virgin version, you may wish to look into it.
Our own grumpy researcher has written extensively on the subject in his thread Fishmates. I am going to try and force myself to swallow 1 table spoon 3 times a day, because so far i have been cooking with it. The good news, it is one product that can be administered in gastric feeding tubes. lets not give up on our bodies. Best wishes Marieline

marieline
21st May 2015, 05:29
hello forumites,
I just read a book on coconut oil, how to use it, it's virtues etc. Wow this is great stuff. for those of you, who have never tried coconut oil, the extra virgin version, you may wish to look into it.
Our own grumpy researcher has written extensively on the subject in his thread Fishmates. I am going to try and force myself to swallow 1 table spoon 3 times a day, because so far i have been cooking with it. The good news, it is one product that can be administered in gastric feeding tubes. lets not give up on our bodies. Best wishes Marieline

Alpacas
21st May 2015, 10:02
Best and easy way to treat Cramp is Quinine. 1 tablet per day should make things much easier.
T-rex

Barry52
21st May 2015, 10:34
I take EV coconut oil and it is great for the immune system. I have no experience of feeding tubes but I would suggest caution. This product is solid at below 25deg C and I suspect it would block the tube.

Barry

Terry
21st May 2015, 12:16
Hi;

Barry makes a very good point about coconut oil. it goes like candle wax at about 18 deg C and is a sort of lesser solid solid till 25 deg C. Has anyone any experience of putting it down a feeding tube? BE CAREFUL IF YOU TRY

Coconut oil is a great substance to wetten rice and pasta or even meat dishes. It helps make thing heavier and lubricates on the way down. It helps lower cholesterol as well. take a few weeks to build up to three spoons as it will make a difference to the bowl movements until your body adjusts. The are different products and some have no real coconut taste.

Barry, are you OK, I do hope you are comfortable,

Love Terry

marieline
22nd May 2015, 05:38
I take EV coconut oil and it is great for the immune system. I have no experience of feeding tubes but I would suggest caution. This product is solid at below 25deg C and I suspect it would block the tube.

Barry
Hello Barry, from what i read, it is very safe. Coconut oil is easily melted by sitting the jar in tepid water. The benefits and the absorption are far greater than any other oil. Easy to flush in 10 mlx before the feed. Just try and place a dollop of oil on your palm and see how fast it dissolve. I will not worry that it will block the tube, but please do your homework and ask your nutritionist first. Anyway have a read, the book can be read online (coconut oil for beginners).
Best wishes

marieline
22nd May 2015, 05:39
I take EV coconut oil and it is great for the immune system. I have no experience of feeding tubes but I would suggest caution. This product is solid at below 25deg C and I suspect it would block the tube.

Barry
Hello Barry, from what i read, it is very safe. Coconut oil is easily melted by sitting the jar in tepid water. The benefits and the absorption are far greater than any other oil. Easy to flush in 10 mlx before the feed. Just try and place a dollop of oil on your palm and see how fast it dissolve. I will not worry that it will block the tube, but please do your homework and ask your nutritionist first. Anyway have a read, the book can be read online (coconut oil for beginners).
Best wishes

marieline
22nd May 2015, 06:03
Hello Terry, i thought you were supposed to melt the oil before you take it. Anyway guys we all agree it is the best oil available at the moment, :) it make a great conditioner for my hair anyway. 1 tablespoon 3 times a day like Terry suggests over food is not much. i add more than 1 tbs of olive oil on my meal and it's still a lot of hard work to get number 2 going. So if coconut oil can oil up the way that would be great.
coconut oil being a medium chain triglicerides, means that it is metabolised differently, it goes straight to the liver and become quick energy sources or they are broken down into ketone bodies which help to maintain brain functions.
Like terry was saying it has many benefits: lower cholesterol, boost immunity, is an antioxidant, boost energy, is an anti-inflammatory, natural antibiotic, help brain function, boost thyroid function and also improve the body's use of insulin among others, good for hair and skin and so on.
I start drinking it tomorrow, will let you know how things go Terry.
Love Marieline

marieline
22nd May 2015, 06:18
Thanks for that bit of info T-rex. I do indulge in tonic water occasionally. After 10 years of having cramps in the most unexpected places, they do not bother me anymore. But it is good to know.
Best wishes
Marieline

marieline
29th June 2015, 10:37
hello all, just wanted to share that i finally stopped being a sissy and started swallowing coconut oil 2 weeks ago. I was surprised that there were no gagging. Anyway i am sticking to 1 tablespoon for now. It is not so bad, if you want to give it a go. I never thought i could. I will report in a couple of months for any changes.
best wishes Marieline

JAN Q
29th June 2015, 15:20
Hi Marieline. I like yourself have lost strength in my abdomen I seem to collapse over from it,it was one of the symptoms I first felt, and although I told Dr and physio prior to being diagnosed, no-one seemed interested at the time.now having read your post and am soon to be referred to therapist again I now can ask for excersise to help strengthen my core muscles. I try to walk upright but it's very difficult. When sitting I can raise my arms and legs no problem but as soon as I stand up my stomach muscles seem to pull me over and I don't feel mobile at all. I need help with walking ,use stick or triwalker for only short distances, and assistance from family and my partner when going further. I am going to try bananas too only have them occasionally but will introduce them to my regular diet. Also don't sleep too good so will try anything.I do find that having a day out tires me the next day and I feel good for nothing. X JAN Q

Dude
29th June 2015, 16:08
Jan Q A rollator is handy because you can sit on it to rest and even get a friend to push you if you get too tired to make it home. It has 4 wheels. If you eat lots of bananas maybe you can swing through the trees. Dude xx

marieline
1st August 2015, 07:20
Hi Marieline. I like yourself have lost strength in my abdomen I seem to collapse over from it,it was one of the symptoms I first felt, and although I told Dr and physio prior to being diagnosed, no-one seemed interested at the time.now having read your post and am soon to be referred to therapist again I now can ask for excersise to help strengthen my core muscles. I try to walk upright but it's very difficult. When sitting I can raise my arms and legs no problem but as soon as I stand up my stomach muscles seem to pull me over and I don't feel mobile at all. I need help with walking ,use stick or triwalker for only short distances, and assistance from family and my partner when going further. I am going to try bananas too only have them occasionally but will introduce them to my regular diet. Also don't sleep too good so will try anything.I do find that having a day out tires me the next day and I feel good for nothing. X JAN Q

Hello Jan,
i hope the therapist is able to help you out. Hydrotherapy works wonders for our condition, because water support our body and allow us to do more.
Yes i have been slack and i have to get back to my routine soon. it is a vicious cycle. the abdominal muscles weaken, so your back muscles try to compensate. then the back get sore and so on. For me when i stand i lock my knees and stand straight for until i get tired. it's not much but it's better than nothing. You can also clamp your buttocks. another thing i was showed a long time ago. to lie flat and have a book on your belly and breathe and try and lift the book and lower it as much as you can. repeat, good for the diaphragm, lungs and abdomen.
I don't know about you.
Like you, i have always have sleeping problem. but i noticed if i go out for a short walk and do some stretches, i am able to sleep at least 4 hours. I think bananas do help and i take some extra magnesium as well. But i find fresh air and movement added to the mix works best.
Best wishes x Marieline

marieline
1st August 2015, 07:34
hello all,
1 jar of extra virgin coconut oil down, i am now able to share with you my observations. it's winter down under and a chilly one as well. I have noticed that i do not yawn incessantly as i used to, especially when my body grow cold. For whatever reason , my energy level is astonishing, i have not felt tired for a while. my general health feels good, i am spending too many hours playing online scrabble but other than the guilty feeling and the lack of exercise, i believe the coconut oil is somehow contributing to my wellbeing. Please feel free to share your thoughts. I have always had a bit of itchy ears and scalp in winter time, even that seems to be better. best wishes x Marieline

Dude
1st August 2015, 09:15
Hi Marieline Does it make you better at scrabble. I'll try some. Dude. x

Terry
1st August 2015, 11:38
Hi Marieline;

It is supposed to be good for us and it has other benefits. It lowers cholesterol and is great to add to things like rice, pasta and reheated meals to wet them and make them slid down better.

Love Terry

Barry52
1st August 2015, 17:40
Tip.

Add EV coconut oil to porridge oats before cooking. The oats absorb the oil whereas if you add after cooking it pools on the surface.

Happy eating.

Barry

BlueEyesOhio
3rd August 2015, 03:38
marieline,
How long did it take you to get "1 jar of extra virgin coconut oil down"? Not at one sitting?!?!?

Lynne

marieline
3rd August 2015, 13:29
Hi Marieline Does it make you better at scrabble. I'll try some. Dude. x
Dude, definitely, i can say that i have won some serious games. Got more concentration that's for sure. :) cheers Marieline

marieline
3rd August 2015, 13:35
Hi Lynne, i am halfway in my second jar now, but i use coconut oil for baking, frying (rarely), for crepes. I started drinking it in June, but been using it for cooking for over a year. I am considering upping the dose. You may wish to give it a try. i am very happy with the current outcome.
best wishes x
Marieline

FlyingSoupDragon
3rd August 2015, 14:12
I'm sure you're all onto something Marieline, Teresa uses the stuff on her face and hair, salads, porridge etc. I used to be sceptical but now think EV Coconut Oil has amazing properties. Drinking it? Now there's a challenge. Gulp, Erp... I'll try increasing the dose in my soup.

PS: the Labrador and Pollyhound go mad for it.

marieline
18th August 2015, 12:48
I'm sure you're all onto something Marieline, Teresa uses the stuff on her face and hair, salads, porridge etc. I used to be sceptical but now think EV Coconut Oil has amazing properties. Drinking it? Now there's a challenge. Gulp, Erp... I'll try increasing the dose in my soup.

PS: the Labrador and Pollyhound go mad for it.

Coconut oil being a saturated fat, though medium chain, i am not sure how much i can consume without it affecting my cholesterol level. In addition to the 1 TSf serve a day, i also use coconut milk in cooking etc. But i am feeling good. This winter i have a lot more body heat than the past 10 years, so there must be some plusses to taking it. anyway , i stopped colustrum for over 2 months to see the difference. Apart from muscle fatigue when i am out and about, and muscles aching, my energy level remains steady. Like your Teresa, i use it in my hair, on my skin. Anyway as a kid i used to eat a lot of coconut, my metabolism is probably used to it.
You can only try best wishes Marieline

Terry
18th August 2015, 18:16
Hi Marieline;

I believe that whilst coconut oil is a fat, it is not an animal fat and actually lowers cholesterol. Have a look on the net but I am petty sure that I'm right.

All the best, Terry

Barry52
18th August 2015, 22:08
Hi Marieline,

EV coconut oil will maintain cholesterol but not reduce it if your level was already high. The other benefits are positive so if you can manage 2 tablespoons per day you should feel the benefits. I melt it in the microwave and add to cereal but I believe Ray spreads it on toast or cakes.

Enjoy
Barry

Dude
19th August 2015, 19:22
Barry I've just got some from Holland & Barret. Can I take it in a brew. Dude

marieline
20th August 2015, 09:48
Hi Marieline,

EV coconut oil will maintain cholesterol but not reduce it if your level was already high. The other benefits are positive so if you can manage 2 tablespoons per day you should feel the benefits. I melt it in the microwave and add to cereal but I believe Ray spreads it on toast or cakes.

Enjoy
Barry

Hi Barry thanks for the tip. I tried your porridge recipe. It came out nice and creamy with the added coconut oil during cooking. It was perfect. Thank you for the tip. I am one of those prehistoric people who are scared of using a microwave oven. I usually just put the solid oil in my mouth while i sip on my tea. It works for me because the hot tea gradually melt the oil and the idea of drinking oil does not make me gag anymore. I am a big fan :)
As for blood cholesterol level, my last full blood work was about 2 years ago and was tip top. I am in very good shape and health if i exclude MND and peri - menopause. anyway cheers Marieline

marieline
20th August 2015, 09:53
Hi Marieline;

I believe that whilst coconut oil is a fat, it is not an animal fat and actually lowers cholesterol. Have a look on the net but I am petty sure that I'm right.

All the best, Terry

Hi Terry, I downloaded this book from the net. Coconut oil is the new elixir of youth and health. However the researchers are cautioning people to take it easy because obviously the big pharmaceutical companies are not cashing up onto it. So i just put it out there so people will check with their doctors before they take it, if they are concerned.
Best wishes
Marieline

Terry
20th August 2015, 12:09
NHS Choices, say that coconut oil is bad for cholesterol but I know that I read different.

I had slightly high cholesterol before I started taking it and after six months it was lower. I don't know if it is due to that or not.

One thing I would say is start it gradually and build up the amount over a month otherwise make sure you're sitting on the loo.

More confusion, love Terry

Dude
20th August 2015, 12:21
Thanks TC you've made my mind up. Coconut oil is going in the bin. I can't get to toilet quickly. Dude.

Terry
20th August 2015, 12:36
It's fine Dude;

Just start with a half a tea spoon a day for a few days before taking a whole one, and build up to two heaped tea spoons or there about's.

People have trouble if they take the whole dose to start with. Trust me, I'm not a doctor!!

Love Terry

Dude
20th August 2015, 13:22
I'll give it a swerve Tel, fearing a hidden agenda lol. Dude

john
20th August 2015, 14:17
You may be missing out on something good if you do Dude.

"coconut oil and cannabis are things which i would agree are useful for PALS in some cases, but the fecal transplant thing is not something worth further exploration in my opinion....i'm glad that the one individual had benefit, but i've seen miracles like that happen a lot and what works for one person may not work for others....at least with coconut oil and cannabis there are dozens of cases of folks with ALS reporting minor QOL related benefits. anyways, just my opinion.
*********I work for the ALS Therapy Development Institute (ALS.net). I am the Vice President of Marketing, Communications and Development there. I am also the moderator of the ALS Forum. My posts shouldn't be interpreted as being the opinion of the Institute or its individual scientists. If I am speaking for myself I will state that, if I am speaking on behalf of the Institute, I will state that. If you want to reach me directly, PM me or email me directly at rgoldstein@als.net. ********"

This is the view from alstdi forum in America and they are trying lots of things looking for a cure.

John

Dude
20th August 2015, 14:40
John It's just the 4 hour gap between carers that concern me. Dude

john
20th August 2015, 15:25
Could you time it so the reaction coincides with a visit or as Terry says just gently does it . If it can improve quality of life it might be worth a try.

John

marieline
24th August 2015, 09:34
Thanks TC you've made my mind up. Coconut oil is going in the bin. I can't get to toilet quickly. Dude.
Hello Dude, unless you are planning to drink a cup, you would not need to be on the loo. Coconut oil is actually broken down and absorbed to be converted into ketones to be used by the brain for energy and what not. before you chuck it out in the bin, please do some extra reading first. best wishes
I wished it worked that way for me Terry, could really do without all the straining. Marieline

Dude
24th August 2015, 09:43
OK Marieline,. I'll try it. Dude x

marieline
28th August 2015, 10:56
since we broached the loo talk, i know it's not the favoured topic for some, but if you are talking MND you have to talk poop. Anyway a combination of factors contribute to ineffective bowel movement. less mobility, less muscle tone, less fluid, less peristalsis. I tried to stay away from drugs and have been managing for the last 10 years and if you are too, you probably try exercise, food etc fluid, but when muscles are weak, it can be difficult.
I noticed among my coffee drinkers friends that whenever we go out for breakfast, they basically can barely make it home to reach the loo. I have always been a tea person, and coffee have always disagreed with me, i become hyperactive.
Anyway the last 2 weeks i have been swallowing my coconut oil with coffee instead of tea. I know little about coffee, just expresso ground, i have been using a plunger, and have been drinking 1 cup. The amazing news is i have been able to evacuate in 1 go since. Usually it take me up, 3 visits, exercises and a lot of hard work to finish. If you are facing my situation and do not want to use drugs or enema. This seemed to be working, nothing makes me happier when i complete the job in one go.
:) wishing you good mental health and best wishes Marieline

Terry
28th August 2015, 12:31
Poo talk then Marieline;

"I have been using the plunger," That sounds very severe.

Hope your success lasts, I do quite often use the enema function on my Bio Bidet as being bunged up and storing revolving wind is just awful.

Love Terry

marieline
31st August 2015, 08:16
hehehe Terry, that did sound awful! i meant i use a plunger to brew my coffee (a coffee plunger). I try to keep the function going as long as i can, There will be time for mechanical or pharmaceutical support later. Although the occasional enemas will most certainly relieve the gas etc.

Bio Bidet is not yet on my list. At least you understand, what i am talking about. The coffee have been amazing, gave me that extra peristalsis. My mood is a lot better too :)
Best wishes
Marieline

FlyingSoupDragon
31st August 2015, 10:50
There is a horrible symbiotic relationship between any laxative effect and a lack of mobility. Still, better that than trying to give birth to a Zeppelin. This is probably 'far too much information', but toiletry is a rich source of frustration and dark humour. Ask the Germans, they love it.

Arising from the chariot presents the first challenge in that tensing of the core and abdominal muscles teases the squidgy gremlins awaiting release deep in the 'owls. That first standing to regain the vertical can bring forth a gravity inspired bovine cascade - it's happened once to me...

So now you're sat on the throne after a struggle to get there, enjoying the days business. All done, the paperwork needs completing. The hand trained over many decades for the task doesn't work properly - the untrained other is going the same way. It's at this point the laughing starts, the sheer stupidity of it all: the gods taunt us relentlessly in their attempts to break the spirit. You don't give in.

What a blessed relief it is making it safely back to your sanctuary, be it chair or bed. Great to feel free, clean and safe 'till the next time.


410

Barry52
31st August 2015, 11:19
Great words Norman and you've put a smile on my face but steady on. I've just had breakfast.

Have a happy day.

Barry

FlyingSoupDragon
31st August 2015, 11:25
LOL, sorry Barry, my timing is probably out. I've tried to be suggestive rather than too graphic - imagination linked to personal experience does the rest. ;-)

Bank Holiday Monday and no rain yet - I feel cheated!

Enjoy the break!

GrannieAnnie
31st August 2015, 13:21
Don't hold your breath - its raining stair rods here! x

Anne425
31st August 2015, 14:24
Norman - I had to smile - have you been peeping? I recognised myself!!

It is raining here.
Anne

marieline
15th September 2015, 07:47
when physiological chat turn to poetry hhmm
To those faint hearted polite one, apologies. POO, bowel movement should be talked here because an incomplete business can not only lead to incontinence, but can spoil your mood especially if i have to go out, i prefer to use my own bathroom (like in my case), affect your appetite, cause bloating , cramps.
You are lucky if you do not have to talk poo while fighting this disease. If you are trying something natural that help you achieve :) completion, please share with us.
Best wishes
Marie

willsandco
15th September 2015, 08:42
Marieline, good to hear from you!

People grimace, but Peter puts prune juice into my weetabix in the morning! He says it is a very moving experience! We discussed this very thing with the neurologist in the week and she said people took linseed oil as well.

Whatever helps, helps. Constipation is dreadful.

Much love. Joycie x

Terry
15th September 2015, 11:39
Hi Marieline;

I too have weetabix, two and a half and five prunes chopped up in a separate bowl and a tablespoon of coconut oil. Yummy, I do enjoy it all.

I do take half a Macrogol sachet in the evening as well.

Here is a link to more details:-

http://forum.mndassociation.org/showthread.php?5830-Constipation&highlight=bidet

I find that the build up of wind is worse for me as I sometimes just can't release it.

Love Terry

FlyingSoupDragon
15th September 2015, 18:46
Hi Marieline;

I find that the build up of wind is worse for me as I sometimes just can't release it.

Love Terry

LOL, my GP prescribed these powders, two a day was his recommendation. After an exploratory PAAARP I reached for a cork and reduced to a half sachet per day. Risky business testing the boundaries and going for an aggressive 'release' eh Terry?

Good luck, start with a 'sqeakum'.

marieline
17th September 2015, 11:41
See it is not so hard to share tips. It is a serious issue. I do take ground linseed Joycie. I have mixed my own blend of roughage got psyllium, linseed and some other stuff i buy from the supermarket.
I will add prune as well. Notice my fascination in this basic function, taking pleasure in small thing cannot get more literal :)
I massage my tummy to get the wind moving with lots of water it is not my main concern. My main concern is when i lack the muscle strength to do the job.
Hence my focus on improving maintaining the muscle strength in core and back. Coffee has proven amazing in that it really make you feel the peristalsis in the guts, my best result so far. Remember the gut play a massive role in causing disease and a healthy gut will keep us fighting a little longer
Best wishes
Marie

alid.blue55
18th September 2015, 12:39
I get Fasciculations in my upper arms. So far I have not experienced Cramps. My approach is that until I suffer pain , this is just another minor effect of this bloody condition. Positive thinking goes a long way.

Terry
18th September 2015, 13:09
Hi Alid and welcome;

Yes, it's good to ignore things if possible. I've been quite fortunate by not having much pain as a result of Mnd.

Long may that continue.

Best wishes, Terry

marieline
12th October 2015, 07:22
Yes Terry, MND being what it is, "mysterious" manifests itself differently for each and everyone of us. I have had fasciculations and cramps since very early phase and although i have quiet periods they never left me. I have learned to justify and explain their presence, so they are my allies rather than my enemies.
I get a lot of muscle pain, but it is because i tend to overdo things. Yes terry the wind is a pain in the bum. Did you know that magnesium help to remove them. as well as drinking plenty of fluid, moving. massaging the tummy from the right, following the large intestine, you can actually feel, pockets of air in their and after you've displaced them, sitting on the toilet usually do the rest. Get your lovely wife to help. bringing the knees to the chest is another way of massaging the guts and for stretching the lower back and the legs.

i am currently back on Colostrum 6 capsules a day, after nearly 6 months break. The muscle pain is definitely less with the new combo, coconut oil, colustrum, Vit B6, Vit D, Zinc, Folic, B 12, .
I added vit E, Iron and Vit C because the periods are erratic and was feeling a bit pale. Other all energy level is good and bowel is working great. I am one happy lady :)

Best wishes
Marieline

Dude
12th October 2015, 12:19
http://www.nhs.uk/Conditions/vitamins-minerals/Pages/Vitamin-B.aspx#B6

Be careful with B6. Dude

Terry
12th October 2015, 16:11
Glad to hear you're happy in some ways Marieline;

No, never knew that Magnesium might help with wind, I will get chewing my racing motor bike crankcases straight away as they are made of the stuff.

Love Terry

marieline
14th October 2015, 03:22
What can i say, simple things make me happy. Actually Terry, chew on 1 a couple a day and you will be surprised. I put powdered magnesium in soda water. my daily dose before bed. :) try (but be prepared for the loud burps).
cheers Marieline

marieline
14th October 2015, 03:29
Hi Dude,
Thanks for sharing. B6 is one amazing vitamin that i believe we can all benefit from. But always check with your doctor to check if you need it first.

with my personality type and the symptoms, B6 is very helpful to me. I shouldn't really say that, since i have never actually taken it on it's own. Overall i am satisfied with myself currently. my focus is on keeping my body in functioning order, so far so good.

cheers Marie

Dude
14th October 2015, 08:52
http://www.nhs.uk/conditions/peripheral-neuropathy/Pages/Introduction.aspx

Hi Marie My posting highlighted negative effects of taking too much B6 especially above. Dude x

marieline
27th October 2015, 08:58
http://www.nhs.uk/conditions/peripheral-neuropathy/Pages/Introduction.aspx

Hi Marie My posting highlighted negative effects of taking too much B6 especially above. Dude x
Hi Dude, your article mentioned peripheral neuropathy of which B6 is the main treatment.
I developed peripheral neuropathy, real bad a while ago after falling on my tailbone. I did not have B6 at hand then, but still have numbness, burning when i do too much.
I take B6 on an off it is not continuous. I never take supplements continuously anyway. I treat them just like prescription medicine.

So have you personally experienced side effects from it?
thanks for sharing the link.
Best wishes Marieline

Dude
27th October 2015, 10:15
Hi Marieline No I have not taken B6 but randomly googled side effects. Dude. x

marieline
1st November 2015, 09:01
Hi folks, I have discovered that taking linseed, psyllium, coconut oil and magnesium and healthy fresh fruits and veges and plenty of water is amazing.
If you are looking for ways to assist with number 2 business. :) look no further. and i still left out prune.
currently having some trouble with muscles. Any tips. i am planning to go see physio, but in the meantime, i can try something.
If i go downstairs, like when there is a fire evacuation, happened last week. muscles in the thighs, calves, well the big muscle groups, goes into spasm and form tight hard balls that are awfully painful.
took about 4 days of regular kneading, magnesium drink to relax them. I is a common occurrence now if i push just past the pain limit.
any advice please, this does not look good.
best wishes
Marieline

Dude
1st November 2015, 11:09
Hi Marieline Am I right in saying you were diagnosed on 2005 with mnd and are still climbing stairs, or am I missing something. Bad luck in the rugby yesterday. Dude.

njm
1st November 2015, 13:11
Hi Marieline Am I right in saying you were diagnosed on 2005 with mnd and are still climbing stairs, or am I missing something. Bad luck in the rugby yesterday. Dude.

Hi Dude/Mariele:

Its a very good question. if this is the case you surely must have PLS. I went to the oxford PLS day and the visiting American Professor made the following point on the basis of her retrospective and prospective research timeline where she has followed a national cohort of 'pure' PLS patients. She reported the following:
1. pure PLS hardly ever die from PLS. They can and do live a normal lifespan.
2.They are able to ambulate 'walk' for decades with or without assistance. Usually they walk indoors and use scooters/chairs outdoors.
3. They get bulbar symptoms that affects speech and causes pseudobulbar emotional lability.

But they have to be pure PLS. Perhaps that is your clinical picture mariele?

Charles

Dude
1st November 2015, 13:43
Hi Marieline/Charles The angle I was coming from was maybe the stuff you are taking is doing you some good and naturally I became interested, but looking at your first post in 2012 saying you had mnd for 7 years before. Dude x

njm
1st November 2015, 13:55
Hi Marieline/Charles The angle I was coming from was maybe the stuff you are taking is doing you some good and naturally I became interested, but looking at your first post in 2012 saying you had mnd for 7 years before. Dude x

Dude:
I fully understand. If mariele's concoction have that kind of delaying effect its a near miracle and we should all be on it asap. My guess is it is probably PLS and prof Froescher painted a picture of such slow progression it seems to correlate with mariele's timeline, symptom picture and progression. So like you I am interested in your diagnosis mariele. might it be pure PLS?

Best

Charles

Terry
2nd November 2015, 18:16
Hi folks, I have discovered that taking linseed, psyllium, coconut oil and magnesium and healthy fresh fruits and veges and plenty of water is amazing.
If you are looking for ways to assist with number 2 business. :) look no further. and i still left out prune.
currently having some trouble with muscles. Any tips. i am planning to go see physio, but in the meantime, i can try something.
If i go downstairs, like when there is a fire evacuation, happened last week. muscles in the thighs, calves, well the big muscle groups, goes into spasm and form tight hard balls that are awfully painful.
took about 4 days of regular kneading, magnesium drink to relax them. I is a common occurrence now if i push just past the pain limit.
any advice please, this does not look good.
best wishes
Marieline

Hi Marieline :

I do have similar problems but probably less pain and more locking up of the muscles.

I know that if I'm put under any pressure I just can't move and my legs straighten. I think that I'm further down the road than you but the extra pressure of doing more things and quicker could well be causing the problems.

Taking things slower and doing one thing at a time or just thinking of some gentile slow music can help.

Perhaps some stretching and exercising might help a little, like squats, Baclofen is supposed to help but maybe it doesn't work for me. It might be good to get some muscle relaxant, maybe Larasipan to have as a standby, and take one just after if that happens again. It may relax things quickly, causing less damage to the muscles and a quicker recovery.

Love Terry

marieline
8th November 2015, 06:40
Hi Marieline Am I right in saying you were diagnosed on 2005 with mnd and are still climbing stairs, or am I missing something. Bad luck in the rugby yesterday. Dude.

Hi Dude, No had first symptoms in April 2005. Was not diagnosed until November 2006. Thought the symptoms will go away but just kept on getting worse.
I believe the fact that i learn to manage on my own for the first 2 years may have contributed to how i manage things. Again i have to mention "CONSTRAINT INDUCED THERAPY". I had no concept of this particular mode of therapy, but i did what i had to survive.
Yes the All Blacks kick our butts, but we are patient :)
Best wishes
Marie

marieline
8th November 2015, 06:45
Hi Marieline Am I right in saying you were diagnosed on 2005 with mnd and are still climbing stairs, or am I missing something. Bad luck in the rugby yesterday. Dude.
:) and Dude, i have to climb stairs when the lifts fail and when someone burn their piece of toast and the fire alarm goes on like forever. I live on the 6th floor, so no wonder my thighs goes into spasm. It's a lot of hard work.
But these days i use a walker for stability when i go out on the street, but do not use support in and around the complex.
cheers

marieline
8th November 2015, 07:10
Hi Charles,
I believe i do not have Bulbar palsy but certainly symptoms correlate with ALS. I have tried so many things physical therapies, supplements, . But is consistent is B12 injection about 6 months after being diagnosed fortnightly for about 3 months, then Monthly, then every 2 months and now every 3 months, but i am bringing it back to every 10weeks. My decline was as rapid a what most of you folks have describes, from the drooling, choking, laryngeal spasm, breathing difficulties. But NOTE i learned to cope because i thought it was only temporary as a result of the root canal. I KNEW that is was serious and i knew that i could die and because of my fear i just did what i could to keep breathing and learn how to relax through the laryngeal spasm, so i do not suffocate.
I have always expressed my interest in homeopathy, i believed they help me and allowed for a period of remission. However i overdid with the physical activities. Reason why i always stress to please do not overtax your muscles.
Note also that i had a bucket list that i was determined to accomplish. It took me 6 years and the mind is a powerful weapon in living with MND. I know with certainty that i started to feel worse once i had nothing else left to do. So keep yourself busy with interesting stuff. The mind is not meant to stay idle.
Does that help. My Neurologist who do not believe that Neuroplasticity has a place in managing MND, reckons he can only attribute my delayed progress to "mind over matter phenomenon". I personally do not let anyone influence my thought process.
I am always happy to use tips borrowed from the forum, which i am grateful.
Each is a blessing and i feel sorry for myself, have a cry but always tell myself that it could be worse. Always find a reason to laugh or smile.
cheers

marieline
8th November 2015, 07:22
Thanks Terry,
Yes my body respond well to Voltaren. It is my pain med of choice, but i have run out of it for about 2 months now. Yes going in Next week for b12 and prescription.
Yes my body demands that i stretch constantly, i have to do that to be able to move sometimes and i do go for daily short walks.
I suppose after the b12 i will know how useful it is to me, because i was due for one in september.
I too if hurried is basically immobilised, :) i tried to run from a bee on my balcony and :) i couldn't understand why i wasn't moving, until it downed on me hehehe.
When the fire alarm starts screaming and that voice come on telling you to proceed to the nearest exit, my legs just start shaking.
I believe that adrenaline which would usually help us to run, now somehow is turning my limbs to jelly. a lot of mind control and breathing goes in before i can move.
I believe that there are similarities here.
cheers Marieline

Dude
8th November 2015, 08:55
G'day Marieline Maybe you should consider moving to ground floor because lifts are not to be used in a fire. Keep fighting Dude x

njm
8th November 2015, 15:22
Hi Charles,
I believe i do not have Bulbar palsy but certainly symptoms correlate with ALS. I have tried so many things physical therapies, supplements, . But is consistent is B12 injection about 6 months after being diagnosed fortnightly for about 3 months, then Monthly, then every 2 months and now every 3 months, but i am bringing it back to every 10weeks. My decline was as rapid a what most of you folks have describes, from the drooling, choking, laryngeal spasm, breathing difficulties. But NOTE i learned to cope because i thought it was only temporary as a result of the root canal. I KNEW that is was serious and i knew that i could die and because of my fear i just did what i could to keep breathing and learn how to relax through the laryngeal spasm, so i do not suffocate.
I have always expressed my interest in homeopathy, i believed they help me and allowed for a period of remission. However i overdid with the physical activities. Reason why i always stress to please do not overtax your muscles.
Note also that i had a bucket list that i was determined to accomplish. It took me 6 years and the mind is a powerful weapon in living with MND. I know with certainty that i started to feel worse once i had nothing else left to do. So keep yourself busy with interesting stuff. The mind is not meant to stay idle.
Does that help. My Neurologist who do not believe that Neuroplasticity has a place in managing MND, reckons he can only attribute my delayed progress to "mind over matter phenomenon". I personally do not let anyone influence my thought process.
I am always happy to use tips borrowed from the forum, which i am grateful.
Each is a blessing and i feel sorry for myself, have a cry but always tell myself that it could be worse. Always find a reason to laugh or smile.
cheers

Marielle;
You have been symptomatic for a long time and can still walk. That is extremely rare. Therefore my question was: What have the doctors diagnosed?
it sounds very slow ALS or pure PLS (which is a rare form of MND affecting the upper motor neurones only).

What have the specialist neurologists said to you?

Regards

Charles

marieline
10th November 2015, 06:27
Hello Charles, Define slow?

I do not agree, but then i do not know your situations, what you can or can't do? how much hard work have you put in to maintain your mobility. How important your mobility is to you and how far will you go to maintain that independence. That is 10 years of hard focussed work and sheer determination.
I have a few written report from the neurologists, i do not read them, because of the poor prognosis and sad outlook. To repeat to you will be like accepting this prognosis as a reality.
In Australia we ruled out bulbar, because it's prognosis is lower.
Then Whether it's just upper, or just lower, or combined. Being diagnosed of both lower and upper motor neurone, My Neurologist is baffled that i can still do what i do, but then he thinks i am odd. Perhaps it is time for another opinion, i have seen 2 Neurologists already.
Now i see myself as someone with a chronic degenerative illness condition.
Sorry i will have to ask about this PLS possibility at my next appointment.
Cheers
Marie

marieline
2nd February 2016, 07:31
I never got to hear from you Charles, would have been good to get your views on Neuroplasticity and the place of Constraint Induced Therapy in the management of MND. But like i say, do not worry what others say, just keep doing what you think is working for you.

John, you have exceeded your data, there may be many who are trying to contact you, i was trying earlier on.

I have just had the best summer of tennis, I say Murray should win this cup next year.
I am wishing us all a fantastic year, may we continue to be resilient, our resolve unshakable and our spirit remain strong.
I have decided to be stricter with the exercise regime this year. As of Monday i have hydrotherapy and exercise bike. I have decided to be moderate but consistent, so far so good doing 10 minutes exercise morning and night. could be placebo, but i feel good.
COCONUT OIL, do not disregard it, it may have it's place in our diet. Read about it and please try it.
Best wishes Marie :)

Dude
2nd February 2016, 08:56
G'day Marie Did you get PLS diagnosis. Dude x

Terry
2nd February 2016, 12:35
Good to hear from you Marie;

Keep us undated.

Love Terry

pacer1971
2nd February 2016, 14:52
Glad your back Marieline
Missed your input. On the exercise bike use toe clips or clipless pedals and pull up as well as pushing down.
Cheers
Darryl

ccinjersey
2nd February 2016, 16:38
Good to hear from you Marie :)

I been using coconut oil in my hair as a conditioning treatment, it's amazing! leaves hair very soft, shining, and silky better then conditioners! :)

My sisters uses it instead of olive oil when cooking, I think I will try that too.

xox

Dude
2nd February 2016, 19:04
Too close for comfort in Iowa CC. oxo

marieline
10th February 2016, 02:48
G'day Marie Did you get PLS diagnosis. Dude x
Hello Dude, here down under we keep it simple. as i said those fancy terms were not used when i was diagnosed. But i was told it was not bulbar, in fact Pseudo - bulbar was used.
I really do not understand why you guys want to put a label on it. In fact i rather not because then it becomes inevitable. Don't you feel trapped by getting all scientific and all. leave that to the specialist but focus instead on what your body says and listen and hear and respond. You will achieve a lot more. sorry i am a hippie at heart :) We are more than a disease, and once we are able to see that.

Best wishes Dude
Marie

marieline
10th February 2016, 02:54
Glad your back Marieline
Missed your input. On the exercise bike use toe clips or clipless pedals and pull up as well as pushing down.
Cheers
Darryl


Hi Darryl,
Yep i just started back with exercise, :) i did 50 minutes in the pool and 5 minutes on the exercise bike. So i have been looking on ebay to buy one, 10 to 15 minutes a day will do me loads of good, especially with the spasticity of the lower limbs.
Working with a new physiotherapist, so have to walk more without the walker. I need discipline . But i am enjoying getting up at 5am to start hydro at 7am ;( haha, i tell myself, my brain will get off on the determination.
cheers
Marie

marieline
10th February 2016, 02:59
Hello CC,
Yes i drink 1 tablespoon every second day with my coffee. I found that it works magic on the bowel or rather coffee does and i like taking them together. But i used coconut milk and cook with coconut oil. yes read about it, there are a few literatures out there.

keep well xox Marie

marieline
10th February 2016, 03:08
Hello Terry,

Yes i was immersed in my summer of tennis, You are more likely to see me now that i am saturated from watching people run after a ball.
This years focus is use of colostrum with exercise and of course coconut oil and rehabilitation of those weakened limbs and core.
I started early, so i am happy. I have decided to put off a mobility scooter for a while longer after realising how dependent i grew on the walker, we tend to chose the easy way out, it goes against the whole concept of the "constraint induced therapy".
Anyway, enough babbling for now.
Keep well and keep smiling
xo Marie
Cheers Marie

Dude
10th February 2016, 09:01
Hi Marie We put 'labels' on because they are different in both onset & life expectancy. Someone with PLS should not encourage people with mnd to undertake tiring excercise. Having said all that, I admire your positivity & determination. Dude x

marieline
14th February 2016, 05:02
Dude, are you out to confuse me now! I definitely to do some research. You seemed to suggest PLS is not mmd, now i am confused and i am supposed to be a nurse. Anyway keep well and keep posting. Best wishes
Marieline

Dude
14th February 2016, 08:54
Hi Marie I do that a lot lol. Obviously pls is a type of mnd as is mine mnd pbp, but it is not as fast in progression' as other forms of mnd and you can actually live a long time, it says on google. Your 'supposed' to be a nurse, don't you know. Anyhow , my only point is that new members may read your posts and think they can do the same excercises. I don't really know what I'm on about. Dude x

pacer1971
16th February 2016, 12:23
Hello Dude
Doing exercise helps people not to loose Muscle. So advising new members to not do it is not helping them.
I had a week's holiday at the end of January after that break from the gym, when I restarted at the gym I could not move the weights I was using before the holiday, off took me over a week to 'recover from that loss. Marieline is right as she is recommending what works for her.
Do you do anything to stave of this condition?
Cheers
Darryl

Terry
16th February 2016, 18:33
Hi Marie We put 'labels' on because they are different in both onset & life expectancy. Someone with PLS should not encourage people with mnd to undertake tiring excercise. Having said all that, I admire your positivity & determination. Dude x

I sort of agree with Dude and you Pacer;

I think that exercise is good but you shouldn't overdo it so that your muscles are hurting or that you get very tired. Moving things through there full range of movement helps keep the muscles and joints stretched and mobile. If you can do the movements yourself and do some sort of exercise program, it will help you keep your muscle mass to a certain extent.

I believe that this applies to all types of Mnd but there are people that simply are not able to do much and I don't think that exercise slow the progression but it might well improve the quality of life in a few ways.

Over exercising may well make the progression faster and will probably mean that you will have less movement and even cramps in things like hands and fingers.

Love Terry

Dude
16th February 2016, 19:02
My discussions with Marie revolved primarily around the slower progression of different types of mnd and the amount of excecise to take. Light aerobics moving all muscles is good for all anything more is a personal choice. I have 2 x 1hour massages a week and do some gentle excercises in the garden and house. Dude

pacer1971
19th February 2016, 12:42
Hello Terry and Dude
My observation over the last three years with this condition are that it is difficult to over exercise muscles that are affected becuase the amount of muscle you can recruite to do the exercise limits what you can lift so it's difficult to over exercise. People new to the condition keep being advised to take it easy well that's just another way for a muscle to atrophy.
Cheers
Darryl

Dude
19th February 2016, 14:20
Darryl I think you're right. Dude

Bakerchick
19th February 2016, 15:32
If I try to do too much (I am still very mobile) I end up the following late afternoon with the shakes. It has happened twice now. BC

Dude
19th February 2016, 16:05
Me too BC, I have to have half mug of tea otherwise I wear half. Dude

Ellie
19th February 2016, 16:42
Dude,

What type of exercise do you manage to do?

I know you're weight bearing, like me, and your arms can lift an Ensure, mine are virtually useless, so I can't do any active movement.

Thanks,
Ellie.

Dude
19th February 2016, 17:14
Ellie Not much at all really, we have been discussing that lately,. My left arm about 6 ins and right 10 ins. coincidentally my shoulders were 'burning' but a few minutes ago I got a carer to rotate my shoulders and the burning has gone., So it will be daily. I''ve got eyegaze but not used it yet . Dude x

Ellie
19th February 2016, 17:24
Yeah, my carers do daily passive arm movements too. I manage to do leg movements myself; quite limited, but don't want to seize up!

Bakerchick
19th February 2016, 17:24
Hi Dude - I've started wearing pretty much everything I try to put in my mouth. I was in a fancy restaurant the other day, sitting one table away from John Major and I spat my water out! At least it wasn't red wine!

Dude
19th February 2016, 18:54
Oh BC, you name-dropper you. I seen Ken Dodd on Lime St station . x
Spill my blood, spill not my wine.

pacer1971
19th February 2016, 23:34
Hello all
After exercise if I get fasciculations or cramp/spasm I take a protein shake or some protein food.
That generally sorts it out.
Cheers
Darryl

marieline
23rd February 2016, 06:00
Daryl,
If i can add my 2 cents worth. I have had nearly 12 years to observe the cramps / fasciculations and came to the conclusion that although they are diagnostic of motor neurone disease, they are not all bad. Signs that the nerves are trying to reconnect. So i take magnesium and colostrum after or before physical activities. I do not know if you get spasm (rigidity) in your limbs like i do, but i find that if i go ahead with the movements, e.g keep walking the muscles relax after a little while. i am more or less a vegetarian, so i may eat more eggs test it out. Thanks for the tip.
Cheers Marie

marieline
23rd February 2016, 06:13
Hi Marie I do that a lot lol. Obviously pls is a type of mnd as is mine mnd pbp, but it is not as fast in progression' as other forms of mnd and you can actually live a long time, it says on google. Your 'supposed' to be a nurse, don't you know. Anyhow , my only point is that new members may read your posts and think they can do the same excercises. I don't really know what I'm on about. Dude x

Ohh Dude, you mean 5 minutes on an exercise bike with little resistance is heavy duty exercise. come on. walking in the warm pool can only helped, not harm. Don't be spoilsport now! you know that muscles need to go through a range of movement daily to help with circulation, avoid swelling, spasticity etc. If you cannot do it for yourself, someone must help at least twice a day. If you call this exercising i will have to put you through a bit of real exercise. :)
Anyway i share what i think helps based on my knowledge of my body, but sometimes just standing with support helps, or walking if that is possible or folding the laundry, or washing the dishes. Anyway, i am only saying :)
Keep well. cheers Marie

Dude
23rd February 2016, 08:47
Hi Marie I've actually changed my stance on exercise. I've always supported moving joints but it's up to the individual. X

Dude
23rd February 2016, 18:15
I used to shake just before I took a drink from glass or mug, but took advice from Darryl to have a protein drink so past 3 days I've had 1 protein drink at midday to replace 1 Ensure and shaking has stopped completely. Dude

marieline
28th March 2016, 09:32
Dude :), came across this note on Exercise Limitations for Individuals suffering MND (note that it says MND not ALS or those other terms you used).
- do not perform direct resistive muscle strengthening to individual muscle groups, but if you do follow the guidelines for how much resistance to use. In other word, ask a professional to guide you.
- do not exercise to point of muscle soreness or fatigue (i still struggle with that one)
- have a rest the day after exercise
- if your muscles feel sore 2hr post exercise then reduce dose at next session
- if you feel sore and tired the following day then reduce dose at next session
if you are able to do less (activities of daily living / mobility) the following day then reduce dose at next session

in other what ever you do, stop before you feel sore or muscle fatigue.
Happy easter to you and everyone on the forum, hope you are able to enjoy the little things that you are still able to do and rejoice for it.
Wishing you all good mental health.
Best wishes Marie

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