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Stroke Club?

(39 Posts)
Primrose53 Tue 17-Mar-26 21:24:13

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 Tue 17-Mar-26 20:26:01

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?

NotSpaghetti Tue 17-Mar-26 19:27:23

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.

Fallingstar Tue 17-Mar-26 18:48:42

*work on this

Fallingstar Tue 17-Mar-26 18:47:58

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

Fallingstar Tue 17-Mar-26 18:44:57

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.

Iam64 Tue 17-Mar-26 18:39:27

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

B9exchange Tue 17-Mar-26 18:30:48

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?

Primrose53 Tue 17-Mar-26 09:43:23

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.

NotSpaghetti Tue 17-Mar-26 09:29:11

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.
flowers

B9exchange Mon 16-Mar-26 17:22:42

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?

NotSpaghetti Mon 16-Mar-26 11:45:54

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.

NotSpaghetti Mon 16-Mar-26 11:44:12

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.

B9exchange Sun 15-Mar-26 20:15:47

I know there are quite a number of you on here whose DH/Partner or friend has suffered a severe stroke, and you are now full time carers.

I just wondered if it would be worth chatting together on things you have found helpful, whether equipment, exercises or therapists?

To start us off, I have just bought a urine bottle with a luminous top. Sounds daft, but actually the fact that DH can find it in the dark means my sleep is not quite as disturbed, which benefits both of us. Your turn?