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Danijela

Senior member
Joined
Dec 3, 2008
Messages
667
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
City
Bolton
Hello to all.

I have been meaning to write for some time, but with the two month old baby there is never enough time. Quick recap - my partner started with first symptoms 2 years and 3 months ago, weakness and extreme atrophy of his left hand and then forearm. He was diagnosed relatively quickly, due to mixture of upper and lower symptoms, dirty EMG, exclusion of other causes etc. - the usual. We attend and MND clinic about 4 times a year.
Two years on his left hand is pretty useless, and he has weakness in his right hand, but atrophy seems to be happening at a slower pace. He thinks there is something happening with his right leg too, but physio and neuro are not sure if it is a result of an old injury or MND related. Breathing, speech, swallowing still all fine. He is still working full time, which is very important to him.

Last week we went to MND clinic for usual quarterly tests. Neuro reviewed all the notes, and concluded that my partner's progression has been fairly gradual and slow. He has no doubt that we are dealing with a form of MND, but encouraged us by saying that Laurence was at the slower end of the spectrum that is MND. He asked if L wanted to repeat EMGs, which L declined as he is confident that the diagnosis is correct. He also said that he recalls seing L for the first time, and that there was no way of predicting the progression (I insisted back then) hence he is quite pleased that L is relatively stable.

I guess I am writing this as an encouragement for newly diagnosed - we did not know how this was going to pan out- weeks, months or years. It looks like years, for which we are extremely grateful. Also, after the initial shock we decided to simply carry on with our lives - we travelled, I completed my PhD, we now have a beautiful son...And while I still don't think one can beat MND (in a sense of being cured) I guess in our own way we chipped away at its armour.

Dani
 
You have a very good attitude about this disease and I believe that makes a big difference. It sounds like you have a wonderful family, I hope your partners progression continues to be slow and you both enjoy your baby. Good luck and take care.

Dana
 
Yes, carry on with your lives, for as long as possible. Grieve the losses afterwards, it does no good to worry about the future. What will be, will be. Savor what you have now.

Dick
 
That is great news that your partner is progressing so slowly. A certain percentage of PALS do have very slow progression and survive for many decades. I hope he is one of the lucky ones. That will be wonderful if your child can grow up knowing his daddy.
 
Thank you for the update and the FABULOUS news!
 
So glad to hear the good news about your partner... I hope you both ,well all three of you make lots and lots of wonderful memories together for a very long time. Linda
 
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