Stroke Club?

Just thought I'd give this post a boost.

Thinking of you all.
I has a stroke and recovered well - not everyone is so lucky- and my mother-in-law's stroke was seriously debilitating.

Her physiotherapist said she was doing too much excerise and needed to give her body a break between exertions.
I'd say take note of your physiotherapist.
She improved quite a lot with more breaks.

Thank you NotSpraghetti, good to hear you are making progress. That's worth bearing in mind, though our problem is fitting everything in, so days go past without any arm exercises for example. In the past couple of months DH has started to walk, 10 months after his brain bleed, which is thrilling, but some days are better than others.

Apart from stretching the arm and encouraging him to raise it, any ideas how to progress?

Any equipment that will enable him to do more one-handed?

I did write a long reply yesterday which vanished as I pressed "post" but the nub of it was - my mother-in-law improved from her paralysed left side - leg first then shoulder, elbow wrist and (lastly) fingers. We were told that this was the common order improvements often occurred.

She was 101 when she had the stroke and she did make huge strides over the months afterwards.

Re fingers/hands - she was told to practice "turning pages" or "clicking your fingers" (and other manipulations) with her left hand - even if she saw no movement. Eventually (and excitingly) she would get a little twitch that showed the brain making new pathways towards control.

She also was shown how to work with a mirror - telling both hands to do something and persuading her brain that her left hand was doing what she was doing with her right hand.
This was a bit more tricky to set up for her but it seems to be a relatively new way to try to regain movement.

Here's an example
youtu.be/c8bXx1pA_Iw?si=025sllVAkFaV67DH

The mirror we used was a lightweight and smaller one than this.

A simple thing that was good was a lovely new plate from Tesco. It had a substantial edge to push food up against.
I think if you looked up "deep lip plate" or similar you might find something attractive.
It was a bit like the one in the screenshot but I think slightly straighter and taller at the edges.
It was so nice for her to have something fairly stylish to eat from.

She was advised against using a stick with multiple "feet".
And we invested in some excellent shower safe non-slip bathroom mats.

I would chase the OT and the neurological physiotherapist for an exact and specific plan.
My mother-in-law really looked forward to her appointments with them (though it would wipe her out for that day and the next.

One told me, as she is constantly in a battle in her mind (trying to gain control of her body) please try to spend some time exercising her mind for it's own sake.

They said to read to her (if she wasn't reading from choice) and to discuss what was read.
I was told that often mental capacity decreases through a combination of lack of practice and exhaustion (with the mobility stuff).
She was reluctant to do the simple crosswords that the physio gave her though as she used to do the Times ones and had decided that these were "obviously for children". No actually they weren't but she wouldn't do them.

One thing that was lovely was having a break (for both us and later the live-in carer) and also for my mother-in-law.
Sometimes just having someone pop in is a treat for everyone.

Her 2 hour "respite" carer was always willing to take her out in her wheelchair for a walk in the park
We arranged two hours a day. Everyone looked forward to it.

Sometimes they did exercises, sometimes they chatted, sometimes they planned things.
I would recommend this if you can afford it.

I expect you have a wheeled over-chair type table and so on. That was excellent if a bit small.
Also biros with a push top mechanism so the point is easy to retract - and lay-flat notebook to write in.

We bought a "dementia" radio as it just had three buttons (we programmed radio 4 and radio 3 and the other was for a usb type stick. It had no dials. It was very expensive but I later saw them on Ebay second hand from about £25 - made by relish.

If your husband was a gardener maybe a raised bed would be nice with summer on the way. My mother-in-law loved to pull out a few weeds!

I do hope your husband makes more progress. I found reminding my mother in law about where she was "only two months ago" helped lift her mood when she was most frustrated.

But remember you will only help him if you have the energy to help yourself first.

My husband cannot use his right arm and hand at all. He hated me having to cut up his food. My son bought him a Knork which is a sturdy metal fork with an edge that cuts his food. He is very pleased with it. Bought it online. About a tenner I believe.

We use a plastic bag on the car seat for him to swivel on.

He has to wear an arm support on his affected arm and it is very fitted and you use it on the bare arm. Sometimes it is a struggle to get it on so I apply talc first. Helps a bit.

Will post again if I think of any other useful tips.

Thank you B9exchange for starting this.

Wow NotSpaghetti those are amazingly helpful tips, I am going to print them out and go through them. I did get a knork for DH Primrose but unfortinately they only make them for right hands, and his is out of action, so he cannot use the cutting edge. Someone on Dragons Den should make one!

Have any of you tried going away, what did you need to take with you?

A good thread, thanks B9exchange for starting it. I’m high risk for stroke and six months ago blue lighted to stroke unit. Thank goodness not a stroke. My husband had a series of catastrophic strokes. Mum also. Stroke touches so many of us that though I’ve nothing constructive to add, I’m so grateful to see this thread which will help many of us

This sounds like a good idea. My DH had a stroke 14 months ago and can get very agitated and anxious at night, I have to sit with him until he calms down. Recently my DD gave me a white noise machine that my GCs used, didn’t have much confidence in it but since using it have seen that he is much calmer at night and sleeps better. He can’t walk far and I have to hold his free hand whilst he uses a quad stick in his other, is much better than a walker or an ordinary stick. For the past 14 months his eyesight has been a constant problem, eventually after banging on about all the time he may be getting prism glasses when he next sees the optometrist. If this is a bother for anyone’s DH or a member on the site, do push for this, have looked prism glasses up and they seem to be what he needs.

Thanks to the OP for starting this.
Would love any advice on cognitive issues and memory loss. My DH has a very bad short term memory and will repeat himself a lot. Any ideas how we can work on thus

*work on this

Just found this link.
It includes a ready-made mirror setup and other ideas.

www.flintrehab.com/best-hand-exercise-equipment-stroke-patients/?srsltid=AfmBOop273eOSJcGBdf3uzUZNWFxC4b-XYp5X0-xBz4JFNTavJsVKDwV#:~:text=2.,gradually%20improve%20their%20hand%20strength.

We did try a mirror box, this one uk.saebo.com/shop/saebo-mirror-box/ It is designed to fool the brain into thinking both hands are working. DH got bored with it pretty quickly, but perhaps we should persevere. He has very little voluntary movement, can lift hand from waist to mouth, with quite some effort. And he can just marginally squeeze a soft ball.

Do any of you use splints at night?

B9exchange

Wow NotSpaghetti those are amazingly helpful tips, I am going to print them out and go through them. I did get a knork for DH Primrose but unfortinately they only make them for right hands, and his is out of action, so he cannot use the cutting edge. Someone on Dragons Den should make one!

Have any of you tried going away, what did you need to take with you?

The Knork is for either right or left hand. Maybe you are thinking of something else. My husband has to use only his left hand as his right is useless.

B9exchange

We did try a mirror box, this one uk.saebo.com/shop/saebo-mirror-box/ It is designed to fool the brain into thinking both hands are working. DH got bored with it pretty quickly, but perhaps we should persevere. He has very little voluntary movement, can lift hand from waist to mouth, with quite some effort. And he can just marginally squeeze a soft ball.

Do any of you use splints at night?

My husband uses a splint at night. He was very fed up last week and decided it was not helping so didn’t use it for several nights. Now he is using it again as apparently it DOES help.

https://signal-corridor.live/uploads/talk/202603/medium-iepo5-1000047375.jpg%3C/span%3E https://signal-corridor.live/uploads/talk/202603/medium-8pjosb-1000047377.jpg%3C/span%3E

This is the radio that was really successful.
It only has limited choices and the volume so isgood for cognitive issues too.

NotSpaghetti

This is the radio that was really successful.
It only has limited choices and the volume so isgood for cognitive issues too.

This looks good, thanks for the link NotSpaghetti.

https://signal-corridor.live/uploads/talk/202603/medium-d82bbd-1000047385.jpg%3C/span%3E https://signal-corridor.live/uploads/talk/202603/medium-36tj6k-1000047390.jpg%3C/span%3E https://signal-corridor.live/uploads/talk/202603/medium-3nlxj0-1000047387.jpg%3C/span%3E

We also bought a great clock... Stupidly again bought it new but several are second hand on eBay I see now that I'm about to list this one!

My mother-in-law kept an appointments type diary and after her stroke would accidentally turn two pages quite often and then got very confused.

This gave her the confidence to work out what was wrong without having to ask for help.
It might be useful for you too fallingstar

Yes the clock looks good, will look on eBay 😜
Wondering if other posters have claimed ate dance allowance. My DH gets the higher rate. It really helps because I can’t drive, we just sold the car we had. Public transport here in London can be good but if is peak travelling times getting a priority seat is difficult, so it pays for taxis back and two for appointments/physio.
He is presently under three consultants, stroke, heart, and neurosurgery, so there are a lot of appointments.

* attendance allowance

Yes. Very helpful.

Yes, my husband gets Attendance Allowance. He also has a Blue Badge which is really useful.

I know others on here will disagree but I still think it is wrong that once you get State Pension you cannot claim Carers Allowance. I work harder now than I ever did in my working life. I have had several people telling me that I should claim Carers Allowance. when I tell them I can’t because I am over pension age they are genuinely shocked and tell me to double check that because it doesn’t sound right!

I agree Primrose53 we should get some kind of carer’s allowance, just think how much it would cost the state to do what we are doing.Is 24/7. And no matter how well intentioned people are when they say you should get out and make time for yourself is just not always possible, I do try but a lot of the time end up postponing or cancelling seeing anyone. The thing is if I am not there he needs someone with him because he can get confused and upset, so I have to call on a friendly neighbour to sit with him or a member of the family, but they are not always free.

I was a nurse on a stroke unit for years and my top advice to someone who suspects their loved one is having a stroke is to act fast and ensure the ambulance service knows it could be a stroke .
The advertisement on TV is correct , if it is a clot, speed is essential. If diagnosed within an hour or two , clot busting drugs can be given which can stop or reduce the effects of the stroke.

I agree it is unfair that those of pension age or above are denied carer's allowance, but we are also denied motability whereas those younger can qualify for brand new cars. We still need to get out to Church, hospital appointments, even dare I suggest the odd meal out, why are we denied any help?