View Full Version : Diet

29th December 2014, 02:36
Hello everyone,

There has been a great deal of very interesting discussion about supplements on this forum and, not to take away fishmate's crown, but I wondered if anyone has adapted their diet to slow the progression of MND that has been at all beneficial? I ask because I am extremely interested in the effects of a healthy diet and have come across a book (I won't name it just in case I'm not allowed) written by someone who overcame MS through her diet. One or two of the reviewers mention that they experienced a lessening of Parkinson's symptoms as a result of following the diet. I know this isn't MND but I just thought it might be worth exploring this as I would like to help my dad in anyway possible and this is an easier avenue to go down than many.

Jenny x

29th December 2014, 03:45
Hi Jenny

New to all this. Have read recommendations to supplements and plan to give them a go. Would be very interested in diet options also. Another addition to my 'to do' list. I know my husband will try anything.


29th December 2014, 07:58
Hi Ciara, I'm sorry you have to go through this too. This is all new to me as well, as my dad has just been diagnosed with MND. I have never experienced such heartache in my life, it's the first thing I think of when I wake up and when I go to sleep, and I think of little else during the day. My thoughts and prayers are with you, we're in this together. Love to you and your husband xxx

29th December 2014, 11:54
Clara I have the same attitude as your husband, I will try anything that may help.

Something I did which I firmly believe helped slow down my progression was totally cutting out gluten from my diet. I also invested in a masticating juicer and daily consumed juiced fruit & veg. I Put myself on a range of vitamins & supplements also along with extra virgin coconut oil. I've recently incorporated Fishmates Lithium Orate & Vit D3 into my daily routine. I also decided that if I was trying to give myself the best chance and improve my health to cut out alcohol.

My symptoms progressed very quickly initially from March to May this year without the above. I can honestly say that incorporating changes to my life I currently feel in better health than I have done in years. People comment how well I look which is a bonus with all that MND throws at you. If I can be of any help send me a PM ladies.

Karen xx

29th December 2014, 14:58
Eat, drink and be merry while you can. I'd rather have six months of confit of duck with chips than 18 months of cranberry juice pumped into me via a PEG.

I was a chef for over twenty years and eating is one of the few pleasures left for me as I write.

29th December 2014, 18:00
Hi jock,

Next to having no speech ,the food restrictions with bulbar are well known, I am glad to say many things I had issues with ,seem to be returning to the menu, having tried puréed foods ,most tasted vile ,I now experiment with the favourites,my one desire is to enjoy a KFC again ,not exactly great food I admit but I would kill for a cheese and bacon on toast with mushrooms .meanwhile just about eating everything I can while I can .Happy new year to you.

29th December 2014, 18:20
I agree with Jock, eat as much of what you like as you can, especially if you are bulbar. You might lose some of your sense of taste or smell or develop issues with swallowing.

I wish I had drank twice as much and eaten fillet steak for breakfast. On a serious note I have read about loads of different diets and decided to try and focus on putting on bulk, as both my neuro and dietician advised that people who kept meat on their bones tended to do better.

29th December 2014, 19:14
Very interesting, Joe loves his food! He also loved cooking it. He has put on weight recently, which he's not too happy about. Joes mum passed away 2 years ago after battling cancer and I've always said her love of good food kept her alive longer than anyone expected. I suppose we have to weigh up quality of life. Giving up the things you really enjoy now may have little impact! So hard to know what is right! Anyway good food on the menu here tonight - everyone knows better than to complain��

29th December 2014, 19:19
I agree with you, it is so hard to know what is right or wrong. I have a lot of trouble getting Jim to eat, but I don't need to twist his arm to have a beer or the occasional whiskey. I suppose with drink its everything in moderation.

29th December 2014, 20:01
I have bulbar, I have trouble with meat, unless it is remarkably tender. (managed turkey this Christmas, not pork!) Just cut out the problematic things like chocolate, soft cheese, sweets, fruit but I can get through, I would really miss my favourite foods, hope my sense of taste doesn't go too soon! But I still have the taste and inclination for a swift half of bitter so that it good news, eh? Love to all, Joycie xx

29th December 2014, 20:06
Hi Jenny,

If your Dad's got his food prepared for him, and no problems eating or swallowing, take the long-term route,
There's no point in eating rubbish while you still can,.. thinking "to hell with months/years ahead"
The best type of diet for MND is apparently one that tends towards Alkaline,
I've come across many,..but it's not for me,...they have you hardly eating proper food,
See Marie's thread on Fasciculations,..or pm her for advice,..she's Wonderwoman down under,

Out of date thinking by NHS staff, is no use to MND sufferers, that are wasting away, they aint got a scooby,
Eat as much fats as possible,..calories are not any concern when you have MND,
Extra Virgin Coconut Oil, contains "good fats" called MCT's,..can incorporate it in all meals/baking/on toast

Your stomach is where your Immune System starts,..everything gets processed there
Consider taking Digestive Enzymes to start, they put proper Gut Flora in place,..
If the Stomach (engine) functions properly, no yeasts or bacteria's build up,..no extra mucus probs,..
Mucus is your body's responce to fighting something,..it produces more,..as a defence,

Is the old saying "an apple a day"...or your "5 per day",...going to supply/likely to,...all the above?

That's the long-term approach,..try and strengthen the body to withstand progression, make MND fight for it,
But progression will have it's way in the end,..slow or fast,
A few folk are currently trying a combo of Lithium Orotate/Vit D3,..it remains to be seen if effective, hope!!

Take care,

29th December 2014, 20:19
To be fair Ray all the NHS staff I have spoken to say the same about fat and calories as you do.

29th December 2014, 20:26
Agree Joycie. I can still manage stewed fruit - plums, pears, apples black currants, rhubarb, gooseberries ( from the freezer) but fresh fruit is no go. Chocolate is ok if in small bits and no probs with cheese but easier if cooked. Have maintained my weight - cream helps!

29th December 2014, 20:40
yes, Miranda, for the first time in my life, I can eat biscuits, cream and all sorts of fatty stuff at will, I have fought the flab all my life! My weight is staying standard now but since diagnosis I have lost about a stone and a half so I can fit into my clothes really well now! I just watch what I eat - go carefully! I have stopped sitting at the dinner table with Peter because he eats too quickly, I just take a tray and eat at leisure and enjoy my meals! Love Joycie

29th December 2014, 21:36
This post reminded me of when Jean was in hospital last year. I used to cook bacon just before I left to visit and wrap it in foil to sneak in. It was the highlight of her day.

Eat, drink and be merry while you can.

Alison x

29th December 2014, 22:31
That's it...joe just said he fancied a wine. I was going to talk him out of it! Or try! I'm away to pour ;)

30th December 2014, 00:12
hi all,
as someone who has recently lost the ability to eat i say eat what you want while you can. you will have no idea how much you will miss that avenue of pleasure when its gone. i'm glad i ate junk food and drank what i wanted, it made me happy. i'd rather that than live on organic oats mixed with moss grown on the side of some mystical chinese mountain whilst throwing 100's of supplements down my throat each week when theres no actual proof that any of it actually works! for me the best type of diet for mnd is one that keeps you happy and full, i'm 6yrs in and still here.
dont worry be happy.

30th December 2014, 01:01
LOL :) You sure your not an Italian Mik ?

Ciaramia poor that wine girl ! :)


30th December 2014, 01:41
Jenny asked a straightforward question about possible effects from proper dieting,..to slow progression,
She is interested in healthy dieting,..so she might be able to help her Father,

Another example of a potentially good thread,..being ruined by the usual chat-room ****.

Instead of being offered experience of various regimes, trials with certain foods, fruits, etc,
She's advised to eat what she can, while she can,..nothing else,
Other folk, instead of pm's,...tell each other of lovely cream cakes, biscuits,.wine,..

What's all that got to do with the advice Jenny asked for,

Instead of folk maybe adding various diets on here,..?...for other people to try,

I offered good advice, correct the stomach first,..then eat proven nutritious food,
I didn't advise supplements other than enzymes for stomach,...Coconut Oil is food,

If her Father's to survive this for hopefully many years, his body stands a better chance if fortified
with known nutrients,..over as long as possible,..so i gave long-term advice

If some folk swallowed 100's of supplements 6 yrs ago,..as i did,..they might be eating still,.!!!

30th December 2014, 02:02
Well said Ray.

30th December 2014, 02:30
You always give great sound, and well researched advice Ray. This forum is lucky to have you because you lead to an alternative path when there seems to be no other road to take.

Fortifying the body with nutrients is just smart. Again though, it’s just a forum with different opinions and views being expressed. I don’t believe the thread was ruined with ‘chat room crap’. I’ve found every post on this thread interesting, informative, and some humorous. Chit chat can be a good thing in my opinion, it keeps some normalcy in people’s lives that have been turned upside down by this dreadful thing. It’s the common thread for all to share in.

Of course though.. it’s just my opinion :)

30th December 2014, 02:58
Hi CC, hope you had a lovely Xmas,

I wish there were clear concise threads on various topics, so that newbies, or others, can refer to as the
need arises,...threads like..."should i take Rilutek or not",..it's sinking down the ratings,

So another newbie comes along in say two months,..asks questions relating to Rilutek,..see what i'm saying,
There should be constant threads on topics,..mucus, rilutek, bipaps,..whatever,..but kept straight!!!

Not scattered with unrelated dribble,..that doesn't need to be said,..on a proper serious thread,
if someone posts,..whom we've not heard of for ages,..that prompts,..hi's,..how are you's,..but pm them.

All of you know this illness is serious,...and i've always dealt with it in one way only,...seriously!!!
Progression doesn't take a holiday or day off at Xmas,..and neither does my approach to treatment,
every day's the same,..folk seem slightly astonished why i don't change meals/regimes over Xmas period,
it's because i know MND doesn't relent,..that's why i'm serious about my posts or threads,

If someone asks serious straightforward advice,..give advice re--the subject,..or butt out,..

30th December 2014, 05:05
So sorry, didn't mean to offend anyone.

30th December 2014, 05:17
Thanks Ray, I had a beautiful xmas, unfortunately it came and went to fast! Now if only I can get rid of the bills as fast Lol Hope you had a wonderful xmas as well, one holiday down one more to go.

I hear what your saying Ray, but I think that would be very difficult to edit each thread that way because it’s all not black and white. For you it probably is though, because you seem to have a more scientific, analytic mind so you see things very straight forward, and clearly. For someone like me, I see things very colorful, humorous, and find the absurdity in just about everything, and never one clear path.

That being said, having so many individuals here approaching this illness at different stages, attitudes, prospective, and even cultures it would seem impossible in my opinion to stay straight on a subject when different views, thoughts, opinions, emotions and personalities are being shared on any given topic.

Yes, a very serious illness, and thank god for this wonderful forum where anything and everything can be expressed, understood and respected by all that this illness is effecting. Sometimes we all just need to agree to disagree. It makes the world go round :)

What makes it all even more difficult being on a forum is we only have the written word here. Tone and content can never be heard which easily can let to misinterpretation and misunderstandings.

Come on you’re the E.O. you know how important it is to have laugh or two, and it’s ok to laugh on a thread about fiber and constipation too, remember Ray if we don’t laugh we’d all be crying.

Just my humble opinion…yours truly xoxox

30th December 2014, 09:53
i am sorry ray for having an opinion that differs to yours. i stand by a previous statement that you have a bad attitude. you hate anyone questioning what you post and when they do you throw a hissy fit. the thing you dont seem to realise is that this is an open forum where everything is open to debate. your word is not gospel and you should learn to respect the opinion of others. also my answer on this thread just as valid as yours id rather have enjoyed what i ate than deprive myself of being happy. you may post a lot of helpful comments which i respect and i admire the time and effort you put into it, i'd rather put that effort into enjoying my family and friends.
i'm happy with the way i've lived and continue to live my life 6yrs in!

30th December 2014, 10:44
An "Internet forum" is an online discussion group according to Wikipedia, where people hold online conversations.

I don't know if this applies to everyone else, but when I have a conversation with people I say what i want in response to what the other person/people are saying. I don't think we have to have boundaries and rules on what we are allowed to say. Obviously it's about respect for what each other has to say and for me this forum is about love and friendship and helping each other through the most horrendous disease I can think of.

I respect your views on supplements and healthy living even though in my view it depends on the speed of progression and a lot of luck. Healthy eating etc will make you feel healthier irrelevant of wether you have MND.

Jean lived on a very healthy diet (bar the odd slice of bacon). She didn't drink or smoke, never ate processed food and ate organic vegetables etc. she was very active and still working on her daughters farm at 71 until this disease took hold. Her progression was rapid and by the time she was diagnosed in September 2014 she had already lost use of all her limbs, had very little speech and unable to eat much.

Maybe you could approach MNDA for advice on a better avenue for your diet and supplement advice via a link or something so that all the relevant information is in one place and everyone can easily find it when they want.

I would like to thank everyone who gave me advice over the last four months but most of all I would like to thank those who posted "unrelated dribble" and made me and Jean feel like we were not alone and for the caring love you have shown to me since jeans passing.

Long live MND forum

Alison x

30th December 2014, 11:12
I don't think this thread was ruined at all. Ray, you have chosen to go down a certain route, fair play to you for having that belief and seeing it through. Remember though that you never know how you would have progressed without supps, that's the problem, we have no control group.

Much of what Mik says is true, I didn't pick up on your comment that the immune system originates in the stomach which in my view is incorrect, nor Marieline's belief in homeopathy which is in my view a load of codswallop. When someone offers an alternative view to yours on a thread you deem serious you lose your rag with them.

There is room for all opinions on here, I never read the Bewildered thread but some really enjoy it. There needs to be respect for differing opinions and people should be able to post their views on whatever they want.

30th December 2014, 11:38
Hello ray,
I think MOST people are echoing here what I said on Christmas Day to you. I must be very careful this in not interpreted as TELLING you what to do, it is not all I ASK is that you please respect others have an opinion and are in a different place to maybe you or I, as regards emotion and dealing with MND. I have much respect for you Ray please afford the same to all.
Hugs as Always Springtime

30th December 2014, 12:10
I am tempted to respond! But will keep my opinions to myself.

30th December 2014, 13:30
I am tempted to respond! But will keep my opinions to myself.

Hi folks,

The reason why the MNDA forum is so well read by many folk ,is just down to one thing in my view , it isn't full of people all professing to justify their own views are the only one that matters and everything else is drivel !, in my opinion long may the chit chat prevail it's very clear that the majority of visitors see a bunch of approachable individuals who are living day to day with a terminal condition ,and for most who need to draw on the very worthwhile tips from just everyday living with MND ,while this may not please everyone ,I remind you that there are many other forums that exist for the technical and those interested in seeking what the medical proffesion has so far failed to deliver ,A CURE , only speaking for myself, I stay with this forum only to read posts from people similar to myself, those just dealing with living life as best as we can,having no medical knowledge whatsoever ,I don't read posts that do not interest me, but I read everyone that contains issues I can relate to, again only my view ,if I need advice regarding my diet, I will consult a dietician, and I will consult the medical professionals who know me and what may help and what is pointless in my situation ,not perfect I admit but it's what we do ,we seek advice from those who know about our individual circumstances ,rather than say we will all benefit from doing this or that.
It's really simple if you have a Ferrari and it needs attention, you don't ask a bricklayer to look after it ???.
The human body is wonderful and miraculous ,marvel of evolution, most of it we do not fully understand even now ,who are you going to trust when it goes wrong ,someone you have never met, or a professional who knows you, and your condition.

30th December 2014, 16:07
This is not my thread, but i gave what Jenny asked for,..advice regarding diets,
She didn't post to get unrelated dribble,..which i pointed out,..ruins seriously good helpful threads,

You all should respect Jenny and refrain from posting what's irrelevant
Opinions don't come in to it,..facts,..advice re diets,..or nothing,

Instead of unloading your stuff, on whatever thread you come across, why don't you set-up a thread,..
call it,...my daily experiences,..or something,

Anyone can post whatever they like, without fear of opinions,..it'll provoke good responses,
things like,..who you met while shopping, fav wines, cheap hair-do's, anything,
That way, folk with nothing better to do,..can log-in,..then go straight for the daily thread to catch up.

Jenny is wise to try any methods possible to help her Father, rather than wait/rely on Professionals,
she's only got to weigh up the options, practicalities, costs.

This forum is for folk from all over the World,..to draw on experiences, advice, how to cope, etc,
it has a great array of opinions,..which all of us are entitled to,
I have opinions on health matters,..i post them for all to see,..but i don't impress them on folk to the
point,...it should be done this way,..they can choose for themselves,

Fact,...Jenny asked for helpful advice,...got none,..another potentially helpful thread gone wrong
folk will not restrict their posts,..to relevant info,...post anything for posting's sake.

30th December 2014, 16:22
This is not my thread, but i gave what Jenny asked for,..advice regarding diets,
She didn't post to get unrelated dribble,..which i pointed out,..ruins seriously good helpful threads, .

That way, folk with nothing better to do,..can log-in,..then go straight for the daily thread to catch up.

Good afternoon Ray,

Thank you for your post.

I think it is important to remember that the forum is open to all and that opinions are listened to, irrespective of whether we agree with them or not. Often the conversation within a thread will deviate away from its original subject - that's okay too.

This forum works so well because it is a space for people to come together and have conversations that are not restricted to MND, be it motorbikes, favourite wines or cheap haircuts. I hope you can understand that.

I know that many forum members value your regular contributions, and please be assured that your posts do remain on the thread, for all to see, even if the conversation continues on a different course.

Best wishes,


30th December 2014, 17:11
Do you know what..... I was in company this afternoon, there were about 12 of us and we struck up a debate on A... The Price of Televisions!!!! before we new it we were talking about....B... the NHS, I have no idea how we got from A to B but we did. we then deviated to of all things music in the 60's, now don't ask me how we got their either. But, on my way home I thought of this thread. How easy it is to deviate when debating. But the point is we all left each other with hugs and saying we will catch up again very soon and what a lovely time we all had.
Hugs as always Springtime x

30th December 2014, 17:18
ray my post which was in response to jennys original question, i believe a diet that keeps you happy and full is the best way to go and to deprive yourself of things that can give you some joy just dosent make sense to me.is that unrelated dribble,i dont think so.other people are allowed an opinion,just because it disagrees with yours dosent make it any less valid.

30th December 2014, 20:10
Hello everyone,I'm new to this as only recently diagnosed.......still terrified!

30th December 2014, 20:43
Hello Purplemkat, it is terrifying but you will find a lot of comfort and a lot of guidance here

30th December 2014, 22:07

Like you, and most folk, i enjoyed my food, all my life, never counted calories, sod that,
I had a brief spell between 1993-97 when i avoided all fats, sugars, sweets, crisps, biscuits, etc,
it was a denial of goodies, to lose 2 stone because i had stopped smoking,...restarted again 1998.
Even now, i eat what i can, if late at night, i get my carer to bring fish and chips sometimes,.
or if she comes late afternoons, she'll bring lovely egg/bacon rolls or as like,..from a snack-shop somewhere,
I've no problems eating, never choke,..presumably because of what i choose to swallow daily.

But lots of these foods probably contain stuff i'd rather not know about,..trans fats for instance,
Lots of great tasting food, but in some cases bad for overall health, some were poor on nutrition,
So to advise Jenny.."eat what you can" or "whatever makes you happy"...isn't what Jenny wanted to know,

Jenny asks,.."has anyone adopted their diet, to slow down progression"...and..
"she's extremely interested in the effects of A HEALTHY DIET"

Your progression adopted your diet,,which i presume was "eat anything tasty/filling"
I gave her advice to eat healthy, not just eat anything, no point in eating bad foods, poor nutrition

No bad attitude,..i've a great personality most can't handle,...14yrs in,...and steady!!!

End of thread........

30th December 2014, 22:35
Hi Jenny x I would imagine it must help to eat as healthily as possible. My dad's sense of taste changed due to the MND and he only really enjoyed eating sweet things as it progressed. I'd be interested to hear what you try and how it goes. Best wishes to you. Becky x

30th December 2014, 23:42
Hi everyone,

Sorry I have only just got round to reading the responses, thanks so much to all of those who posted. I can definitely see there are two very valid and different approaches: eat what you can and enjoy when you can, and eat to try and prolong your life and slow progression, neither is more valid or better than the other, it's just a case of what the individual wants. My dad, I imagine, would probably prefer the former: to continue eating as he is (he doesn't eat poorly but he probably hasn't had a piece of fruit for several years) whereas my approach and what I will try to encourage him to do is more in line with Fishmate's: try to fortify the body with nutrients to tackle MND where it is possible. There doesn't seem to be a lot of clinical evidence out there regarding diet and what can help MND, but I agree that there is a lot about diet and enriching your life in general. Personally, I have eaten pretty terribly for the majority of my life but when I started to cut out processed food, sugar and gluten, I felt miles better in myself and had a fresher state of mind so I'm going to try and eat in this way, with plenty of coconut oil, and try to encourage my dad to do the same. If the only benefit he sees is feeling a bit fresher and mentally astute, I guess it can only be a good thing, but equally, he is completely within his rights to say no to any diet approach and continue eating the way he has and enjoying the joy of food!!
Thanks so much again everyone xx

31st December 2014, 13:29
Hi jenny. Good to see your measured response!! Like most of us on here, you will no doubt learn from your own and your dad's experiences but it's sometimes helpful to see a range of perspectives and opinions then make up your own mind.

31st December 2014, 15:01
Hi Jenny, maybe one for a later date but if your Dad likes Indian food I find it really easy to eat especially if you choose a Keema (Mince Lamb) curry. If you wanted to add calories then rice fried in Ghee butter is perfect. The spices in Indian food have loads of health benefits including the digestive system. It may also help with toileting, which most of us struggle with thanks to this disease.

Subbing meat with white fish also has health benefits as well as being a lot easier to eat.

31st December 2014, 18:20
What a joke;

I think that all people on here that have posted a lot are guilty of posting relevant or direction changing posts, I know I have done it many times.

I do agree with Ray in as much as it would be nice to have factual threads on various topics so that they were easier to access but on an open forum I don't think it's going to happen.

It is great that most of us support one an other, whether it be by Facts, ideas, humor, etc.

Sorry Jenny for changing it's direction again, love Terry

Nettie B
1st January 2015, 00:14
My Trevor is under 10 stone so my job is keep his weight up as much as possible. If you lose too you have only one direction should an additional illness crops up. His dietician advises whole milk, cream etc as his fat layer is minimal....good when you're well but not with MND. I give him any food he likes. The options are dropping with the advance of the disease but his quality of life very much includes enjoying what he is able to eat. The sadness is that there is now NO drink that he can take. All fluid goes through the peg. This cold weather.it seems so sad that I can't make him a nice hot cuppa ... and no New Year bubbly either.

5th June 2016, 12:19
It's an easy way to get more fruits and veggies into your diet.
Before you get started, you should know a few things about what you can expect juicing to do for you, and what's just hype.
“If you’re not big into fruits and vegetables, it’s a good way to get them in," says nutritionist Jennifer Barr, RD, of Wilmington, DE. You should still eat fruits and vegetables, too

5th June 2016, 13:21
It's an easy way to get more fruits and veggies into your diet.
Before you get started, you should know a few things about what you can expect juicing to do for you, and what's just hype.
“If you’re not big into fruits and vegetables, it’s a good way to get them in," says nutritionist Jennifer Barr, RD, of Wilmington, DE. You should still eat fruits and vegetables, too

Hi Susan ..i have a nutribullet and i care for my friend ..i give him 3 to 4 fruit and veg drinks everyday ..i thicken them with either a banana or avacado as his swallowing is not great with thin liquids but the nutribullet veg and fruit drinks he has no problem ..

8th June 2016, 10:55
A balanced diet is a way of eating that allows you to consume all the nutrients your body needs from a wide range of foods.Maintaining a balanced diet is important to your health – your body's tissues and organs require proper nutrition to work and function effectively. Without an adequate diet, you may be at a higher risk for a variety of chronic health conditions like diabetes or high blood pressure. As our lives become busier, maintaining a healthy, balanced diet may be difficult.

8th June 2016, 11:17
Susan 4 or 5 Ensure cover all my needs and they're free . Dude xx

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