Hi, my son has MS; we are not sure what version . He was initially diagnosed with RR, but generally it appears to be PP,a gradual decline (thanks to Tysabri) although he does sometimes lose control of his legs and hands, but this tends to recover (mostly) in a few days.
Anyway, he has lost control of his hands again, to the extent that he cannot lift a drink or use his phone or laptop. He was a top computer person until this happened, and his laptop is the only thing I think keeping him going. I have always believed that one day he would lose his hands, but have no idea what to do if this is it. Sorry to be long winded, but I would appreciate it if anyone can help me with what to do to help him in a practical way, apart from ringing the social worker tomorrow.
Thank you for any advice xxxx Mel
Hi Mel,
So sorry to hear about your son.
Does he have an MS nurse? If so, contact them. They could refer him to an OT who would maybe have ideas on how to help him.
Letās just hope itās a relapse and his hands will start working again soon.
Take care,
Jen x
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Hi Mrs Higgins
My first major relapse affected my arm and over a few weeks it affected the movement in my hand. It started as numbness and a wet feeling in the arm only to go into my hand. The relapse lasted in total about four weeks and once sensations and feelings returned to a normal-ish state, I regained touch/ control to about 90% of how my hand originally was. This was about 10 years ago now and touch wood, I havenāt had anything happen in my arm/ hand since.
It was a major stress though as it was my more dominant hand and I was unable to undo buttons, pick up coins from the floor, etc. My main worry was how I was going to do my job but I have managed to carry out the work to this day.
If your son works for a āgoodā employer then it might be worth getting a occupational health assessment done before he returns to work (if he does return), this way he could potentially ask for āreasonable adjustmentsā to help him carry out his role, such as some āspeech to typeā software or something.
Wishing him all the best.
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Thank you both for your replies. He is no longer able to work as he is housebound; so his computer is his means of occupying and distracting himself, and communication, and thus is so important to him. His hands are better today thank heavens, but I know this will happen again. I have managed to get hold of a MS nurse, and she gave me some excellent advice and support. I will contact the OT; I have a number. This is heartbreaking as Iām sure you both know. Take care and thank you again. Sometimes I just need to reach out to feel less helpless. xxx
PS, Mrs Miggins ran the pie shop in Blackadder. Thatās one way of consoling myself! I really must stopā¦
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Hello Mrs H, Im so sorry to learn of your sons ongoing progression.
Tysabri, like most DMDs, can cause awful side effects.
I am glad to see his hands are better. I have PPMS and this year have found my hands weakening. I love to craft and use social media on my laptop. So I was worried it was the MS spreading.
I had a carpel tunnel test and it was found I am trapping the ulnal nerve when resting my elbows on my wheelchair arm too much. Difficult one to stop!
If your son should find his hands being a problem again, have you thought about voice technology for computer use? It has good reports. I know this isnt what any of you would want, but it is an idea for future thoughts maybe.
Love Boudsxx
Thanks all; I have contacted his MS nurse and although she cannot visit, she will speak to him later in the week. I also rang the OT and they will wait until the MS nurse speaks to him; she did mention voice technology so that may well be for the future. Iām glad that Cardiff seems to be pretty supportive. xxxx
He doesnāt seem to have any side effects from Tysabri, but as far as Im concerned, he was deteriorating so fast before he began treatment, that it seems to be worth the risk xx
All the best to you all!
Hello Mrs Miggins
I have numb and useless hands. I use an iPad. Itās much easier than a proper keyboard. Mostly I type with just my thumbs, my right hand just hurts if the fingers are curled round (as they want to do). Iāve not tried speech recognition software, apart from asking Siri (the Apple voice assistant) but to be honest, sheās useless, half the time she misunderstands me. A proper voice recognition system would be nice, but ātypingā by speaking out loud just seems sort of āwrongā.
I imagine that any kind of tablet is easier than a desktop or laptop keyboard.
As for sewing, I sewed a button on my husbands shorts not long ago, it took forever, the problem isnāt even the threading of the needle (using a threader thing), itās knotting the end, then placing the needle in the right place. So sad, I used to be able to sew.
Sue