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mellonius
5th June 2012, 17:15
I write this tentatively but just to see what the views of others might be! When I was diagnosed, my Consultant took me in a very measured way through all the things that were going to happen. The only thing he would not do was to speculate about life expectancy, as he said everyone was different, and all statistics were based on averages, and self evidently, no individual was average - you were either below or above etc. I resolved then, well informed, to put tomorrow's horrors to the back of my mind, and concentrate on each day as it comes, knowing each morning that this is the best I am going to be. I am not hiding from the future - but I feel I deal with it then, but not in advance.
However, the MND Association and the Forum doesn't let me do this! My introductory pack from MNDA had a leaflet screaming '50% of MND patients die within 14 months of diagnosis' Great! Just what I wanted to be reminded about. Anyhow, which 50% am I in?
And many of the threads on the Forum, written by those further down the track than I am today, contain graphic descriptions of their current situation. I find myself looking into a magic mirror showing my future. I know what the future holds,. but I don't want to be continually reminded of it - I want to enjoy today while I can. On diagnosis, my MND nurse recommended me not to go meetings of fellow patients - it would not be inspiring, and could be depressing. I feel that her advice was right.
What do others feel?
Having said all that there many other matters that make Forum mebership worthwhile - eg Petes thread about origin of MND - so I am staying on board.!
Mel

G60dubber
5th June 2012, 19:33
your MND nurse is wrong to prejudice you against meeting other MNDers, no matter how knackered and immobile some are, the majority are positive and dare I say it happy people. Go to branch meetings and make up your own mind.

The forum can be a reality check however it's stuff you need to know so you can get a handle on where this goes and how to deal with it and access the care you'll need at SOME point. Being knowledgeable is different to a constant reminder of the known difficulties and doesn't stop you enjoying your daily life.

We used to have a real giggle on here as well as helping with experiences, time to bring the 'fun' back to the forum imho.

pete
5th June 2012, 19:38
Hi mel,

Just read your post ,and there i was thinking it was me who found the whole process once in the hands of MNDA a really upsetting affair, Like yourself , I had the good luck to have a Neurologist who freely admitted that she was no expert in MND conditions but thought it would be better to be refered to a MND specialist , Bearing in mind that I along with many others having searched the internet for many hours after the intial diagnosis of Myasthenia was slowly ruled out , and on there unless your really from another planet it becomes very evident what you may have , but being a optomist I let my doubts as you say go way back out of my mind , the proffesor i met a few weeks later was an inspiration , she spent a time explaining to me that as you say there are no set paths or time scales for anyone , and despite all thats about to happen IF the disease continues she told me that always, never ever spend you life worring about what might be , and live your life as normal as you can within your capabilitys , It was only two weeks previous i had my MNDA pack sent to me by first class post , Thats still pretty much unread ,because like you I found nothing at all positive in it whatsoever , I would have thought after a hundred years or so since this disease was found at least something had been learnt ,and for me thats you dont kick someone when there down , and it appears that by thrusting all possible problems that can arise ,make it incredibly difficult for anyone to remain positive , and thats the only thing on offer at the moment for us ,trying to remain positive ,despite the thousands of pounds research has spent only worthless promises of in another two years ??? there maybe a drug , and a few years on more failed attempts ,just wondering why ,and when a drug is found maybe not perfect why is that rubbished so eagerly by the ones who have done nothing , but spent years wasting money ,on trials being carried out by others but just dont talk to one another , so sad isnt it , but like you , I enjoy reading a lot of posts where maybe you can enjoy peoples tips and hints to help along the way ,and above all where possible have a laugh, because if you reach the point where you can no longer see anything worth living for ,then MND has won again.

paris
6th June 2012, 00:11
Hi Mel - I completely agree - my mom has to continually check the post for MNDA leaflets due to the bold statement "disease that leaves you unable to walk, talk or feed yourself...14 months life expectancy". While we know that they have to use shock tactics in order to raise awareness it does not do my dad any favours when he is trying to live everyday as it comes. The last poster he recieves through the post he wrote down on his trusty pen and paper - "I will be dead by august then" - what do you say to this, I just mumbled something along the lines of "everybody is individual dad stop being silly". hummmm something for them to think about aye....

HKSardo
6th June 2012, 03:18
Hi Mel,

I agree with you that there is very little good news coming along. From a carer perspective, the forum is useful to help me to plan ahead on what I need to take care of my wife. Others experience help me to improve my wife's quality of life ( a little bit) but it does not give hope that cure is round the corner. Be strong, everyday is a bonus.

soniamm
6th June 2012, 06:44
Hi Mel

You raise a good point, my son refuses to become involved in anything other than visiting his neuro or clinical trial nurse. His view is that he knows the upshot and does not need to dwell on negative sites. He was diagnosed April 2010 , he is still able to walk, talk and live independantly. I (mum) am the one who trawls the forums and websites, I only feedback positive info. There is nothing to support a parent and how we manage palliative care I would like to say that the majority of info provided is directed at the 40yr plus age range, how about the youngsters who may not have traditional support like a husband or wife. I have just heard of a young lad of 20 being diagnosed, the MNDA site must be a real scary placefor somone so young. There are a lot of assumptions of the progression of the condition, whatever happend to hope. There is so much going on research wise which makes for positive reading, but you have to search for it.

G60dubber, you are so right about the giggle days, I miss them, and you guys that provided the laughs.

Sonia

Derek_
6th June 2012, 09:24
Ello Mel,

I think your MND nurse was wrong to tell you not to go to your local MND meetings. I go to everyone of the mnda meetings and meet others with MND, Some are worse than me and some are better than me. We chat to each other and disguss things that are available to help us, and we get ideas from each other that are not in any book, but most of all?? I have not met anyone with MND who is misarable, they are all so positive with each other. It's like a club, we meet each other for walks and do things together to raise funds for the MNDA.

Their ages range from 25 to 70 plus. I believe proffessor Hawkins was only in his early twenties when he was diagnosed. One chap who comes to our local meetings has had this 'orrible disease for 30 years. I am chatting to an American woman on a forum called (Patients Like Me) she is 51 years old and has had this disease for 19 years. I have had this disease for 8 yrs, and my wife and I have a lot of fun. We still run Tea Dances to raise funds for the local hospice, all these things give us a lot of moral support. We do have our down moments but they don't last long as life is to short, so we enjoy each day as it comes, and try to go out, if it ain't rain.

Derek

Smudge
6th June 2012, 09:46
This thread has given me some comfort.

I spend hours researching what I think I need to know & then spend more hours in tears at the thought of losing my reason for living before his time.

I am begninning to realise that this awful disease treats everyone differently & I should embrace the good days as they will give me the strength to deal with the bad ones.

Thanks for starting the thread.

Robyn Copley-Hirst
6th June 2012, 09:56
Hi Everyone,

Thanks for this feedback. I can take the feedback around our literature back for us to think about.

As for the content on the forum that's more difficult to act on. The forum is always there for people to talk about whatever they feel they need to, at the times they need to talk about them - be they serious or light-hearted.

Of course everyone is at different stages in their lives and journeys and at whatever 'place' they need to be. This can't ever be a perfect fit with everyone elses place but I'll definitely do some thinking on this one. If there's anything I can do I'll get back to you.

Best Regards,

Robyn

pete
6th June 2012, 10:43
Hi Everyone,

Thanks for this feedback. I can take the feedback around our literature back for us to think about.

As for the content on the forum that's more difficult to act on. The forum is always there for people to talk about whatever they feel they need to, at the times they need to talk about them - be they serious or light-hearted.

Of course everyone is at different stages in their lives and journeys and at whatever 'place' they need to be. This can't ever be a perfect fit with everyone elses place but I'll definitely do some thinking on this one. If there's anything I can do I'll get back to you.

Best Regards,

Robyn

Hi Robyn,

I think maybe the MNDA could try being a litttle less up front with things ,We all know to within limits what we have and where its going to lead , but and it is a big but ???. , maybe a bit less in stating time scales , As you know only to well ,there is nothing set in stone , but when your faced with the news you have had , the last thing you need is pages of what to expect should things go downhill rapid, as many on here can testify, so many live with MND and can lead near normal lives still enjoying so much then on the other hand many are less fortunate , but to the individual wanting to know certain things , I for one feel that like the books you kindly sent me , where you can read chapters as and when you need too, It would be great if we could close our eyes and wake up and all this had been a bad dream but we cant and once its in your head , it makes the whole aspect becomes very difficult for both patients and there familys , As you say there isnt going to be a perfect way , but the Forum is very close to what i need , just need a bit more care in where we post certain items ,

All the best
pete

ps we need to get more posts as we did before , I for one need a good laugh now and again,

miranda
6th June 2012, 12:43
I think the MNDA are damned if they do and damned if the don't. Surely we can be selective in what we choose to read. Members of this forum often state that we are all different with different views on many aspects of MND. Forum members are like any other group - some want to talk about - others prefer to keep their thoughts to themselves. Some like a laugh and a joke - others are more reserved. Some like to have a good rant or express their anger - others are able to use poetry. Some are able to be optimistic - others are so overwhelmed that they cannot. Some want to know all the facts - others want to have the information slowly. But what the forum offers is up to us - I too miss the laughs that we used to have. However, what always comes over to me is the love that many people are able to show for the people they care for and for those of us with MND the love that means we worry about the effect this illness has on our nearest and dearest. We need to keep sharing our thoughts as a way of expressing ourselves (particularly those of us who are no longer able to talk). We also need to share our experiences of coping and help others to manage the many obstacles we face. Phew - I have obviously been storing this up for some time!!!

pete
6th June 2012, 13:21
Wow miranda,

Thats got to be the longest post from you ever???? and sums up what i tried to do , but better ,and the bit about not being able to speak .know what you mean , its so so so frustrating isnt it ,

pete x

Smudge
6th June 2012, 13:22
I think the MNDA are damned if they do and damned if the don't. Surely we can be selective in what we choose to read. Members of this forum often state that we are all different with different views on many aspects of MND. Forum members are like any other group - some want to talk about - others prefer to keep their thoughts to themselves. Some like a laugh and a joke - others are more reserved. Some like to have a good rant or express their anger - others are able to use poetry. Some are able to be optimistic - others are so overwhelmed that they cannot. Some want to know all the facts - others want to have the information slowly. But what the forum offers is up to us - I too miss the laughs that we used to have. However, what always comes over to me is the love that many people are able to show for the people they care for and for those of us with MND the love that means we worry about the effect this illness has on our nearest and dearest. We need to keep sharing our thoughts as a way of expressing ourselves (particularly those of us who are no longer able to talk). We also need to share our experiences of coping and help others to manage the many obstacles we face. Phew - I have obviously been storing this up for some time!!!

Excellent post & it sums up how I as a newbie feel perfectly.
Some days we can all focus on the positive, others we can't see the wood for the trees. I specifically wanted to know how long I may have with John, but when I found the answer I got upset. Then I kept looking & found people that have lived for many years with varying symptoms & I took comfort from that instead.
Although I am at my lowest point at the moment (& I'm only the carer, not the sufferer), i usually resort to humour to get me through difficult times & I am looking forward to making friends on here & supporting others.

Treelover
6th June 2012, 16:40
I am newish too, and only mildly disabled at present. I am the sort of person who needs to know as much as possible about my body and it's problems. I am then able to try and sort it out if possible. I have decided to grasp life now and do as much as I can while I can. Some physical things have gone from my life like long mountain hikes, but I can still walk and talk. I have seen some dear friends make a real effort to meet up and make me laugh. I am going on a long planned holiday at the weekend and through the forum realised that wheelchair assistance at the airports would make things easier, so I have booked it. I am not sure that I want to meet people further down the line though as that's a future that I don't really want to think too much about. Live life today, and face the obstacles as they arise is my way. I think our personalities are so very different and some people have always been worriers, they cannot change that and maybe less information would suit them better. But some of us want to know everything. I don't know how we can all be satisfied by the forum but it certainly has helped me. I love the poems and the jokes too.

Treelover
6th June 2012, 16:57
As an extra thought try this link, it made me smile. http://alsn.mda.org/article/survivors-what-keeps-them-going

mellonius
6th June 2012, 17:57
Thanks Robyn - I accept everything you say. I am however I started a debate - 15 responses so far demonstrates that there is some concern, certainly about literature. As far as I can, I want to focus on family, the Jubliee, Euro 2012, Father's Day, the Olympics etc and not life expectancy, and a forecast of the rapid decline I can expect According to MNDA I should be dead by April 2013. I'll email you if I am!!

roy
6th June 2012, 18:08
I agree some of the posts can be frightening but they are always relevent and for some welcome information, all of the views are variable a bit like our conditions,I like everyone have entered a new life journey recently and although I have read the good the bad and the ugly have found new friends.the point is like Miranda belive the forum should be there for people to share their views and experiences.Like everyone
I have certainly enjoyed the poems and laughs most.I guess I have been fortunate in the way I have been dealt with by the professionals
so far.anyway looking forward for some good news.

Roy.

angnmick
6th June 2012, 22:20
We are all on our own journey at different stages in mind and body. As a carer it has been invaluable to me to be able to talk to carers and MND sufferers to get both perspectives of things.It has helped me in knowing how Mick may be feeling in ways he just doesn't tell me. Not just the niceties of life that do help us but also that someone who may have already experienced the part of the journey you are at so they can tell you what they tried or what got them through. And vice versa sharing our knowledge to.
I know seeing it in black and white isn't what everyone wants, but what else can they do if not document things as an average,there is nothing stopping any of us from being and projecting above average, but remember the MNDA has been collating this information for some time and they are only average guidelines, this disease is so unpredictable that even the Neurologists can't specify life expectancy. We all know life is what you make it not what you let it make of you. This forum is great and long may it continue. xxx Ang

Terry
6th June 2012, 22:23
Hi Mel and others;
To have any disease like ours is devastating and it is hard to accept it. I think most people go through a similar thought process after being diagnosed.
The advice that has been given to by your consultant is right for some people and I can understand that these people might not want to meet others that are in a worse condition. You are right, the introductory pack should not have that statement screaming out, but if it was not there you might be asking for the information. I will bring this up with Mnda and see if a revision would be best.
But for me and others, we find it useful to have some idea what the next stages might bring so that we can try to make sure that we have the equipment and backing in place when we get there, Mnda meetings, the Hospice and the forum help towards this. Even for me, I limit how far into the future I look and study. I like to meet people and quite often there are people in a similar position as you at meetings. It is hard for newbees to mix with those further on but there is never any pressure on you to do so. If you want to approach someone further down the track then treat them as a normal person with good hearing, good brain and normally a good sense of humour and remember that they have been in your situation. Hopefully something will be found so that you don’t get as far as them.
You only have to read or look as far as you want to.
My emotions are affected and I often cry when reading some forums. Sometimes brake down, having to return to finish reading some of the articles. I don’t think this has done me any harm. I try to make sure people know of my problems so they can understand me a little.
Best wishes Terry

Graham
6th June 2012, 22:44
This is a forum. All points of view and ideas are welcome. :cool:

Terry
7th June 2012, 17:32
Hi Mel and Others;
I guess that the forum is made up of about 300 people’s experiences. There are a few major things that happen to a small number of people with Mnd, such as a dislocated jaw when you yawn. This type of incident is unusual. Extreme yawning is common and it is not pleasant but I think it does not cause a real problem generally. I have found that the yawning changes for the better with time.
I along with others have problems with emotions which started quite early on, but mine has not got worse as Mnd has progressed and is easier to handle Manage with experience.
Other things such as stiffness of muscles also change, so that things are not so bad or move so that different areas are affected.
So don’t think you will get every problem, and when you have some trouble there is a fair chance that this will ease, even without drugs.
Try to be prepared and don’t look to far forward, Terry

Rachelg
7th June 2012, 22:15
"On diagnosis, my MND nurse recommended me not to go meetings of fellow patients - it would not be inspiring, and could be depressing. I feel that her advice was right."

Well what a great shame. Your MND nurse needs to meet my husband who is "further down the track". His MND nurse describes him as an inspiration to others with MND.

By meeting others with MND my husband decided to "live" all the way with this disease. It aint always pretty but he/we have never ever forgotten that the disabled body is just carrier for the person he has always been.

I would hate to think that an MND forum is only a welcome place for "pretty" posts and that MND meetings are only a place for early stage sufferers.

Just my thoughts.

Graham
8th June 2012, 22:48
Hi Rachael,

My love and thoughts are with you and Mark and all others who are faced with this truly horrific disease. I admire your courage and we must be strong in mind.

No one really understands MND unless they suffer this disease, a lesson for the rest.

Stay strong.

Best wishes

Graham

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