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View Full Version : Does anyone know whether my husband's degeneration can be considered 'normal'?



Meliss
4th January 2011, 00:22
Richard first had symptoms in September 09 - difficulty raising his arms - by June this year he couldn't raise them above waist height, he then began falling a lot, stopped driving in August, was diagnosed in September, and has now lost the use of his right arm, cannot raise his feet to walk and is wheelchair-bound.

He was given 2-3 years to live, but with the speed of his degeration, I wonder how long he actually has to live.

Has anyone experience of this speed of degeration?

Meliss

Liz Burr
5th January 2011, 09:37
Hi Meliss,

This is difficult to answer because everybody is so different, even if they have been diagnosed with the same type of MND, so it's hard to say what is normal as such. And MND is so often unpredictable that it is hard to provide an accurate timescale of how it will progress, but it can move very fast. Some people do find that that they have a sudden progression in their symptoms - then sometimes there is a plateau.

I am sure that other members have experiences they will share with you.

Best wishes

Liz

jadedjohn
5th January 2011, 22:14
hi meliss

i have read, prof kevin talbots/racheal marsdons from the oxford john ratcliff hospital - mnd the facts book, and in there is states that the rate of progression is always constant.

dont know if this is correct but who am i to argue.

hope this helps

john

computatec
10th January 2011, 21:52
Hi John

I have also read that book and was puzzled by the constant progression idea. It woulld seem that most of us experience plateaus and sudden steps down to a lower plateau, rather than a linear decline. The answer may be that we live daily with the disease while our neurologists are only monitoring our progress at six weekly intervals so it appears linear to them.

Clive

Scott222528
11th January 2011, 15:44
Hi Meliss

My mother in-law was diagnosed 5 years ago with MND (ALS) and we have found in our experience that there is no change in the illness for a long length of time, and then all of a sudden she will decline very fast before picking herself back up. This would be followed by no change for a while and then she would decline once again. But I'm guessing everybody is different. We do find that she can rapidly decline when she is at her lowest ebb, whether its her depression or if she as a illness, such as a cold.

teresaemms
20th January 2011, 13:48
Hi Meliss, my son of 23 years of age was diagnosed 4 years ago it started with only a pain in his leg and was diagnosed 3 months later since then he is now whellchair bound, has hardly any speech, he has progressed very quickly, like Scotts mother in law he goes along for a period of time then goes down hill very quickly.

angnmick
24th January 2011, 19:07
Hi everyone I'm Ang.
Mick started with drop foot after a hernia op in 2007 and cannot walk at all now,his hand are struggling now cannot do buttons etc, or lift arm too high and starting with neck probs too but never told a timescale for it all as don't think they really know do they ? Ang x

jeanette
28th January 2011, 12:31
hi im jeanette, i have bulbar mnd , ive almost lost my speach , and dont eat anymore i have a peg . i was diagnosed last febuary im in good spirits im not going downhill fast im still able to walk wash and dress myself . and still like to dress up and go dancing , although not like i used to, my daughter is my carer and were always laughing the best medicine

jadedjohn
28th January 2011, 12:42
hi jeanette

welcome to the forum, you will find a lot of helpfull people on here. good to see your keeping your spirits up - its hard i know, but does help - im the same, i have a 5 year old son and a 12 year old daughter, and our life is pretty manic most of the time, so i dont get time to worry about the future. oh ive got Als.

John

anngr
29th January 2011, 11:10
Hi Jeanette,

My husband's walking started to get slow about 2 years ago but as he was overweight we thought it was just his age and weight but in June this year his right hand was affected. He was diagnosed in early August and has deteriorated rapidly since then. He has the hereditary form, his Mum and an uncle had it. His Mum had it for 16 years and hers was a very slow progression, she was still driving and managing to walk to bathroom etc. although she used a wheelchair outside. Barrie lost 7 stone in weight from June to December when he had a feeding tube inserted, now he is not allowed anything by mouth. He has lost interest in everything, just wants to sit and sleep all day. He doesn't want to go out at all or have people visit him. Although it is very worrying to think about the prospect that our children and grandchildren may have inherited the SOD1 gene I am optimistic that all the research being done will come up with an answer. I have never joined a forum before and it is so nice to be able to contact other people who share the same problems. Best wishes to everyone.

Ann

jeanette
30th January 2011, 14:36
hello Meliss , i went to a tea meeting at our local hotel for mnd and carers , i was given 6 to 18 months with bulbar mnd , there was a man there with the same as me he was diagnosed in 2002 , i have the peg , he does not , so everyone although has the same there were all different , not everyone is the same .

Ange M
31st January 2011, 20:11
Hi everyone, I have not yet introduced myself yet, however I cared for my husband who passsed away just before Christmas.
His diagnosis was finally made in October 2009, he actually self daignosed himself in June 2009 and was still riding his 1000cc motorcycle up until August of that year, that was when the weakness in his arms would not alllow him to get push the bike out of the garage. He was not happy with the Gps 'fobbing ' him off with other ailments any way thats off topic at present. His MND was very fast, I could tell differences every couple of weeks, however he was not totally aware of this or did not admit to be, he fought it right to the end changing ways to do things to carry on. Not every one is the same so I would suggest take each of your days as they come.

jadedjohn
31st January 2011, 20:51
hi Ange

welcome to the forum, is am so sorry to here about your husband. its a cruel world is'nt it. but there are some nice people on here and it does help to be able to talk to people - even if it is in cyberspace.

kind regards

john

Jaleshmukherjee
10th February 2011, 08:13
Yes i ve experienced the degeneration from 1988 to 1992. Now its long i dont feel that. After reading the experiences it seems that the disease varies.

butterfly
22nd February 2011, 22:50
My husband had same symptoms and deterioration was just as rapid. He was diagnosed in November 2008 and died in Decemder 2009. H lived 18 months from the very beginning of his symptoms appearing I am now on the committee of our local branch of the MND A and can only say that this is what happened to my husband but it is not the same for everyone. Hope this is of some help.

Irene
26th February 2011, 18:06
Hi Mellis everyone is different my husband John was diagnosed in july 97,he was told because his symptons began in 93 he only had 18months left well hes still here today and he takes whatever life throws at him with a smile i have cared for him since 93 i gave up a well paid job to care full time 9 years ago .Just take each day as it comes and try to enjoy every minute you have together love to you and your family from Irene and John x

suz82
17th March 2011, 19:01
hi jeanette
My mum started 12 months ago. Starting with a limp then got worse over time using 1 walking stick then to 2 then a frame now she cant walk or stand, lost the use in both hands and arms and she cant talk. We find out it was MND on xmas eve but we had an idea.
So my mums is progressing fast but every1 is different, Dont worry to much get the help you need and have fun and laugh its the best medicine!!
suzanne x

Traceygibbo
24th March 2011, 08:56
Hi i am Tracey
my husband was diagnosed nov 2009 after 4 weeks of what we would call symptoms choking on food feet feeling heavy and weight loss.(this had been a period of moonths but he worked nights so put weight loss down to this )
From being diagnosed 5th nov he came outa hospital and never ventured up the stairs again have never seen somthing ravage a body so fast by dec he had his last christmas dinner feb 2010 he had a peg fitted and april 1st 2010 he was ventilated full time via a traccy .. he cant walk talk eat .. and is struggling to comunicate now .. it is so hard to be a carer some days for 8 months i did everything on my own which is hard i now have an agency to help me mon to thur nights and mon to frid afternoons so i can spend some time with our 3 year old daughter .. some days are good some are dark Graham also doesnt really want to go out he wont let anyone wash dress or toilet him ..and the inlaws are a night mare .. but i do my best to keep him comfortable and love him very much .. i have told my 3 year old her daddy is going up to heaven and he is going to be a star ..thats the best approach i think anyway have babbled long enough wishes everyone much love and strength as you all go on your seperate journeys <3

Ange M
24th March 2011, 23:28
Tracey, I empathise with you, I cared for my husband full time and like yours he would not have anyone else to wash,dress and toilet him, I worked full time for 9 months of this. (that may sound hard and harsh but my job is only next door to home, so I was popping back every 2 hours)
I lowered my hours to part time for just 6 weeks when I asked the GP to put me on sick as I did not want to give up my job totally, again you might say this was harsh but it was a decision we both made as I new that eventually I would need the job, and my employer has been extremely understanding and the job was something Steve had really wanted me to do and had supported me in all my studying.
at the end he was admitted to hospital and I spent the final last 3 months nursing and caring for him in hospital, travelling 45 mins each way every day, again because he did not trust anyone else to do it for him and I felt that I could not trust anyone else to do it!

Be strong for Graham and if you want to talk pm me

Ange

Robin142857
12th May 2011, 17:16
Meliss,

Please forgive this trespass into the carers' section, but your husband's case seems to be running at about the same speed as mine. There is a difference: mine has gone from legs to chest muscles whereas Richard's sounds to have gone arms followed by legs.

I've had breathing problems because of MND since November 2010. I believe that MND kills mainly by weakening the breathing muscles so that the patient eventually succumbs to a lung infection - pneumonia. So you might think he has a good while to go and, if our cases really are similar, he could have many months even after the onset of breathing problems - if he ever gets them!.

icingoncake
13th May 2011, 11:48
Robin

You're not trespassing at all! I'm sure i can speak for all of the carers who use the forum that any help and support is always welcome... and im sure that i use the living with mnd forum too!!! does that count as a yellow card?! :)

your symptom progression above is v interesting. Everyone is different but we can all learn from each others journey.

Jenny

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