Post stroke dystonia worsening in a 90 year old. Any advice on treatment?

Follow
Share

Following a serious stroke in December, my mother is still essentially paralysed on the left side. Dystonia in her left hand has gradually involved the whole arm and now seems to be galloping towards her neck too. It is painful and she thinks I'm doing it. Physical therapy is on its way but I'm not optimistic that the therapist will be experienced in treating dystonia. Any ideas for daily exercises, or suggestions on longer-term treatments, would be very welcome.

This question has been closed for answers. Ask a New Question.
9

Answers

Show:
I hate that bloody elephant, and thank God she hasn't missed it - there was a gap of about eight weeks while she was in hospital then rehab, and it seemed to slip her mind. I did take it in to the hospital, honest, but had quick second thoughts about it to do with infection control and the wretched thing causing ructions with (understandably puzzled) nursing staff so I took it home again. Then we rearranged the bedroom...

But while I'm whining about ex-SO, here's a more defining example: we have a shopping list system where you write down whatever you've just opened - blue milk, peanut butter, loo roll etc. For tissues, there are brick tissues, in boxes that are brick shaped, and cube tissues, in boxes that are more or less cubes. And what's he written? "box tissues." To distinguish the ones he wants from the ones they sell loose, presumably.

If mother were lactose intolerant I think my hair would be not just white but transparent. Fortunately not, though I sometimes do wonder about gluten - her sister was coeliac, and we're all a bit prone to gut rumblings. I do hope to stay off the supplement drinks, so I'm delighted to learn that alcohol, dark chocolate and delicious ripe fruit are all excellent possible solutions for her woes.

Sister is here getting her head round being referred to as "the other one" - I winced, but I'm sort of glad that mother is being nuts around her, too, so that she sees what I mean - and my tea break is over - I'd better run. Thank you for the thoughts x
Helpful Answer (0)
Report

CM did you say Mum is Lactose intolerent? I just can't remember. If not Boost is a very good alternative to Ensure. Like you I hate the stuff so can't blame Mum for that.
Right now I have found a generic which is Lactose and gluten free and is 250 calories. I prefer the chocolate flavor but my brand also comes in vanilla and strawberry neither of which apeal so have not tried. that.
Dare I suggest ex SO moves the cupboard and gets the elephant out or failing that makes a trip to a toy shop and buys a replacement. Get your pitchfork out if necessary. You don't need big girl knickers for that your usual M&S will do.
Helpful Answer (0)
Report

If you can hear a peculiar strangled screaming noise, that's probably me from 4,000 miles away. Diuretics, proton pump inhibitors, all the usual suspects… Fortunately, her GP has already taken away her diuretic, beta blocker and [not the ACE inhibitor the other one] (so yes we had better check the electrolytes again, Pam, thank you; though she's not B12 deficient, or she wasn't last month anyway) but she needs the PPI to cope with the clopidogrel… oy. Wonder what else she's not absorbing.

Still! If Dr Dean recommends more almonds it's not all bad news. Yum. Thank you, MS.

Veronica, she puts her toy tiger (replacement for her elephant, which ex-SO managed to shut in a cupboard which he then moved a large wardrobe in front of but thank God she hasn't missed it yet) carefully down to swap the towel over, and resents having to. I'll try the two towel idea, thank you for that. What I'd like is a nice cotton jersey glove with well-padded stays on the back of the fingers and hand. I'll have a go at the wedding ring tomorrow when sister is coming to visit. I want witnesses - can you imagine what construction mother could put on my torturing her with cold water and then stealing her wedding ring? Doesn't bear thinking about…


Thinks gloomily: I'd better look at Ensure's ingredients again, with an open mind. I hate them, she hates them, but.
Helpful Answer (0)
Report

Look into the work of Dr Carolyn Dean. Very helpful!
Helpful Answer (1)
Report

CM can you put Mon's hand in cold water then oil it up and see if you can slip the ring off. As far as keeping the hand open and Mum transfering the device to the other hand give her one for both hands. You are right they do get nasty smelling and yacky (athletes foot of the hand?) a little foot powder might help.
Helpful Answer (1)
Report

Magnesium sulfate (Epsom salts) relieve spasms. Mix hot water and Epsom salt and apply warm compresses to the painful area. Get her a good extended release B complex or ask the MD about B12 shots for relief. Be sure she is followed regularly by a Neurologist, who can Rx proper meds and check for any electrolyte imbalance. Athletes who sweat out their electrolytes often have very painful muscle spasms, so they drink balanced electrolytes.
Helpful Answer (1)
Report

I got all excited when I heard about Botox, Babalou, then read that you have to repeat it every few months and it's not recommended for the elderly. Oh. How deflating. The PT is coming on Monday, a tad reluctantly from the sound of her, and she's already talking about "looking at" pain relief which doesn't say much for her confidence in her own treatments. Thank you for the Wiki idea, Veronica, I will have a look. What I'm finding most baffling, today anyway, is the swelling that goes with it. It's not oedema - I stuck my thumb in it to see, you know, proper diagnostic tests and everything, no trouble spared here - but it's got quite clearly defined edges and it seems to travel gradually up and down the inside of her forearm and the base of her hand. Some kind of tendonitis? I'm getting worried about her wedding ring, too, which hasn't left her finger in 62 years last Monday; but if I can't get her fingers slim enough to slip it off and put it on a chain round her neck I'm afraid she will have to lose it. It or her finger, anyway. She might prefer the finger.

I'm surprised there aren't more splints on the market. Ok, she'd end up looking like the tin man if I could put on all the ones I'd like to; but just a good stout one for her wrist and hand would be a start. Or maybe it wouldn't. One of the reasons I haven't tinkered more, beyond a little light massage and gentle manipulation when I absolutely have to move her arm, is that I'm not confident you're supposed to push against the curling tendency or if that might make it worse. I've just persisted with the early instruction to roll up a small towel or a pillowcase and wedge it under her palm and fingers, but the main benefit, to be honest, is ventilation rather than therapy - I was shocked at how smelly and yeasty a curled up hand can get in such short order. She is complying conscientiously with the instruction to keep hold of it. Unfortunately she thinks the key thing is to hold the fabric, rather than to keep her left hand in position, so she regularly transfers the roll to her right hand and clutches it for dear life. Can't fault her on not dropping the pillowcase, just a shame she can't remember the reason.

She was twitching earlier on, too, but she can't feel that. Very odd. The lovely Liz is back from surgery - and looking a million dollars, too, though I'm sure it really was a gall bladder removal like she said and not a face lift - and confirmed that her shoulder was jumping around like a Mexican bean, so it's not just me imagining it, but mother denies all knowledge.

Off I go to look hopefully at Wikipedia. Hope it's more help than NHS Direct! Thank you both, hugs.
Helpful Answer (0)
Report

Hi, CM; when is PT coming? Has the doctor diagnosed the dystonia? I've read that Botox injections can help sometimes?

I'm sure that the PT will be able to help with exercises, massages, electrical stimulation. the sadder part is that your poor mom thinks that you are somehow involved in making this happen, which of course is part of her dementia. Sadly, this often seems to happen to the caregiver, the person who is closest and doing the most work.

What sort of pain relief are they able to provide for her?

(((((((Hugs))))))))), dear lady
Helpful Answer (1)
Report

Hi CM I have no direct experience or advice to offer on this but did do a search and found Wikipedia had a lot of helpful information. Sounds like a nasty after effect from the stroke. Hope the PT helps or possibly some meds. Poor Mum she doesn't need this on top of everything else. Give her a hug from me. Maybe a shot of scotch for both of you
Helpful Answer (1)
Report

This question has been closed for answers. Ask a New Question.