Any Exercise Ideas or Tips or MS?

[tea_fiend]

Hi there all! I work as a PA with a client who has almost zero mobility due to their MS. They have use of their arms but this has weakened over the years and the fine motor skills in hand dexterity is poor (they cannot write anymore, they cannot control the finer movements of holding a glass and having a drink anymore).

I've been encouraging them to exercise to maintain what control they do have because any further reduction in mobility would mean they could not drive their power-chair and this would be devastating. So I'm looking for any exercise ideas/ tips/ equipment please!

The biggest problem seems to be the hot-flashes. When they get too hot their muscles go so weak and just give up. So I've been working at environmental control and keeping a cold drink on stand by to try help them cool down and this does help.

I've ordered and tried them on using the foam ball, hand exercisers (like a stress ball) and they don't like those - they say they are too hard and hurt their hands. Is there anything softer than this? A better brand maybe?

When laying down, they can push up (like an air punch) a very light dumbbell (I am always present when they do this and support the weight to as to prevent it dropping on them if their arms go weak) but they would like to have more independence and do a little bit for themselves - any suggestions?

Also, they have expressed the desire to work on the muscles in the biceps but their wrists are really weak and doing a bicep curl isn't possible with the weights they do have. I was laughed at when I suggested to them to try something lighter like a tin of beans - Are there any no weight bicep workouts anyone could suggest?

I have advised massage as an aid for muscle relief as they do suffer from a lot of tenseness - has anyone tried this and has it benefited?

Thankies!

[Honey Badger]

If you aren't already doing so I would recommend at the very least researching CBD (hemp) oil, I recall the palliative team down here mentioning MS sufferers were among the lucky few able to obtain it via the NHS when inquiring about it for one of my carees (who suffers with a similarly destructive set of symptoms)

Don't be afraid to bring the topic up with specialists, they'll probably be more than aware of it.

Wish I could elaborate more but I am swamped and this particular thread caught my eye

Best wishes!

[Melly1]

Tea fiend
You sound very interested and committed. When did the person last see a physio? They should have a physio programme in place to follow. Placing playdough inside a balloon is pleasing to squeeze.

Melly1

[tea_fiend]

Hi Honey Badger! Thanks for the reply! I have been hearing some fantastic things about CDB oil and I did my usual, got all the info up about it and presented it and they tried it but to no effect. However, I think the issue was because it was the stuff you can get in Holland and Barrett and I've heard it's very 'watered down' (if that's the best way to put it). I do think going through the GP would be the next thing because I think they'd be able to prescribe something better, something that would actually work but it's just talking through not seeing it as a taboo topic.

Hi Melly1! I totally am! I love what I do and every improvement that they're making is exciting to watch and encourage. For example, some people think it's nothing to be able to eat a plate of dinner but when I started, my client could only manage a yogurt and that'd be it (stomach shrank because carers had been call-clipping, refusing to cook meals because they didn't want to wait the time it took to cook, cool and assist to eat) but with a lot of work and patience now we can share a fish and chips when I come in with it as an end of the week treat and that's a big thing for them. And they can enjoy real food, have put on weight and they feel better.

Thank you that's a really great idea and I never thought about that. Playdough would feel so nice and soft as well! I'd really like to get them access to physio but last time physio came out to see them was about 2 years ago and all they did was leave a sheet of paper that shows basic dumbbell workouts on it and they haven't been back. Understandably this knocked my client's confidence in getting physio because it was so un-personalized and didn't even consider that 5 out of 6 of those workouts they can't do so it's left them feeling like any workout, any idea for a workout would be unattainable. So I'm trying to look at their abilities and work with that so it doesn't only help maintain those abilities but build their confidence so they can see for themselves what they can achieve.

Amazon >> Balloons >> Playdough!

[Ree_1802]

My mum has MS and I got her a pack of two silicone(?) egg shaped things that are a bit squeezey. They fit in the hand and you squeeze as hard as you can.
She can't/won't use them now, but I thought they were a really good idea. I'm afraid I can't remember where I got them though.
It's nearly impossible to get physio round my way. Don't know anyone whose managed to get it, despite severe problems. Same as speech therapy.

[tea_fiend]

Hiya Ree! They sound like they are long lasting. I'll look those up as well. Thank you! And yeah, it can be such a fight to get the people out who you need...for anything. Either you wait weeks upon weeks or they never turn up and some of the reasoning/ excuses are just total rubbish. I don't know if you have tried it or if this will help but if you have an Occupational Therapist or District Nurse assigned to your mum, try press at them for a SALT referral. Long and short is if you start sounding off about needing communication equipment and more living aids, that all sounds like ££££ and they try everything else they can before forking out full whack. So I daresay that through the OT you might manage to get a speech therapist.
I did this with the powerchair for my client - tried contacting the chair services department who are meant to come out, they didn't bother, my client told me their chair had been inadequate for like 3/4 years and they gave up years ago trying to get someone out, to the point they became a shut in as they stopped leaving the house it cause that much discomfort to be in. And all it needed was adjusting. So I said right - on to the OT, requesting new chair! No one will come adjust it, I am not trained as a tech to do that, I don't have the access to order parts either so it's useless and clearly a new one needs putting in place. At this point, the OT heard "££££!!! Broken budget ££££!!!" Low and behold, 3 weeks later the wheelchair people arrived. They've since modified it, adjusted it, swapped out and replaced parts and it's usable.

Thank you Melly for the balloons and playdough idea because they've tried it (I did an Amazon order and had immense fun that trying to stuff the balloons) and they love it! We also had a hilarious moment where as a joke, my client yells "CATCH!" and since I was not expecting it, I did the worst kak-handed catch ever! Got hold of the balloon ball with my finger tips, nearly dropped it, caught it, almost dropped it again and my nails broke the balloon as I was flapping around that much. They were in stitches laughing at me cause not only did I look like a drunk seal but it tickled them that the struggle I had putting the playdough into the balloon in the first place I'd have to go through again.
It was a brilliant laugh and really glad they're feeling this texture more manageable.

[jenny lucas]

At one of my elderly-with-dementia MIL's care home the residents all did 'chair yoga'. Not entirely sure what it was, but it was designed to keep everything moving. Not weight bearing though, for obvious reasons (ie, elderly with dementia = v. wobbly!)

[tea_fiend]

I tried yoga once and I nearly had to make a claim on the home insurance

They can't independently move much of their body anymore but the idea of gentle stretching exercises which are aided could be worth me exploring. Thank you!

[Dom_Thorpe]

Hi Tea Fiend. A simple bicep exercise for someone with poor grip or wrist strength would be to use a resistance band wrapped over your patient's wrist - right below the wrist joint. This will allow them to pull against the resistance without engaging the wrist at all.

At this stage it's super important to keep them doing as much as possible to maintain what little strength hey do have.