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Hi wonderful stroke survivors and carers me again my husband had his stroke 4 months ago now some days he refuses his medication I no he can be quite chatty one minute then he gets frustrated with his right arm because he said it’s dead he has feeling in it but has yet he can’t move it so that is we’re he has a lot of pain has any survivors of a stroke have you felt like that not take your medication saying it’s not working and how long before you had any movement in your arm he has slight communication problem and he gets very frustrated that he can’t get his words out he is making a amazing recovery and we are hopeful he will be home soon has he is still in rehab. He sees a lot of his fellow stroke survivors going home and he gets down then at the moment everything is going through to get him home now just waiting for the care package now it does get me down I have to stay with him sometimes because he refused the medication I’m getting better not crying so much I still haven’t eaten or slept properly since it happened but I am getting there I have amazing family friends support but it’s you guys who have been through this journey with me I appreciate it very much :heart:

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@Mummydearest1956 4 months is still early in stroke recovery terms & there’s lots of room for many more improvements yet. My arm wasn’t affected as badly as your husbands but it still took months till i got back most of the use.

I know there are others who have had very restricted / no movement in their arm but have now got some movement. It took many months though. Patience is a big thing on the recovery journey & you just have to keep trying. Even when you think no progress is being made the brain is learning & all of a sudden you’ll notice an improvement.

It’s ultimately your husbands choice if he takes his meds or not. I don’t know what he’s taking but assume it is some of same stroke meds that we all take. They are aimed at preventing another stroke & not taking them would put him at higher risk. He’s no doubt feeling very frustrated. Just keep encourahing him. He will improve it just takes time.

Don’t forget to look after yourself too. You’ll need plenty of strength when he gets home.

Wishing you both lots of luck & sending my very best wishes.

Ann xx

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@Mummydearest1956
Hi. I know exactly how your husband feels. I’m 8 months post stroke and my left arm and leg still don’t work properly although they are both considerably better than they were. I have always taken my medication but very often refused to do my exercises saying they didn’t do any good so what was the point? I was in hospital 5 weeks and was desperate to get home. I think that stupidly I thought that once I was home everything would miraculously get better but of course it didn’t and in fact got worse! 7 months on I am now walking reasonably well around the house with a stick and my arm no longer waves around uncontrollably although both my arm and hand are still very stiff. I’m lucky to still be receiving NHS physio once a week but admit I’m not so good at doing the exercises in between visits!
Your husband will improve but yes it’s a long road. Just keep encouraging and try to be patient- not easy! - I know. Fight for him to get physio when he’s home. I’m lucky in that I have an amazing GP who still sees me regularly and listens to my moaning but also cheers me up! Sorry for rambling on and good luck - it will get better

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Hi @Mummydearest1956 - you mention that your husband describes his right arm as “dead”. One of the things that helped me rationalise what had happened was understanding that my limbs were fine, it was the signal from the brain that wasn’t working properly. So his arm isn’t dead, it’s simply waiting for the right signal.

Easier said than done of course but he’s at such an early stage of recovery. Brains are amazing and can find an alternative path round the damaged cells. It just takes time, which is incredibly frustrating for everyone.

Acceptance was a big step in my recovery and I’m sure I made more progress once I wasn’t fighting against the diagnosis.

Best wishes to you both.

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Hi @Mummydearest1956
My wife Lea volunteers for the SA to run a carer’s cafe, normally a very quiet affair every other Thursday at 1:30 BST on https://bit.ly/StrokeCarersCafe The next one this Thursday . (And I run survivors cafe on the other thursday is at 1:00 on https://bit.ly/StrokeThuCafes)

I was in hospital for a month during which it was all very disorientating, scary and unsupported for Lea .
When I came back my arm didn’t work at all.
I couldn’t lift it even to my navel. as of now two and a half years later I can put it slightly up my back, & behind my head, & I can just about touch the ear on the other side. Id describe that as 80%. My hand and wrist in contrast works about 0 to 30% of capacity. if I want to take a very big risk I can lift a coffee cup after I positioned the fingers off my right using my left hand - but I had better have my left hand their throughout before the coffee is all over me .

I can walk. Short distances over good ground. My leg slightly swings around rather than travels through the knee line . So I get pains in my foot because my gait isn’t right but it’s enough to allow us to go to the farmers market or a walk on the beach together. Running anywhere is in the farthest future.

At about 4 months my shoulder was so painful that I couldn’t move without jolting it or jarring it and sending powerful pain everywhere.
at about 6 to 8 months that had resolved with the help of a specialist, but it was useless. I found most of the physiotherapy that I’ve been given between poor and useless regaining the capability required for everyday use for multiple reasons although initially some of the exercises were useful. now I have developed my own regime.
EG I shower everyday pretty much. It’s one of the mainstays of my capability development efforts.
I make great efforts to use my right hand to wash my face & left hand armpit and over the months I managed to get my arm to move to the state that is in at the moment. I use door handles and light switches, initially as targets, then as targets that I reached but couldn’t manipulate and now as things that I manipulate but have to stand in front of. I’m aiming within the next year to get them to be things that I do as I walk past them. currently I have to stop and line myself up, I have to consciously relax the muscles in my foot to make my fingers move, I take every opportunity to carry things with both hands which is necessary because my left has been overused during the last 2 years and how it has trigger finger and other complications and pains. I also think my meds give me pains. I get pains in my thighs and knees; statins are quite famous for causing muscle aches.

It probably took 18 months for my meds and my body to settle down to each other. diarrhoea from the meds to cease and then it became constipation, which may be from the meds but it’s very simplistic to attribute one cause to one effect post stroke.
I do take my meds but I do wonder about it.
the medical profession just provides a knee jerk , blanket response of: have a blood pressure, a statin, a stomach protector, a beta blocker or blood thinner; “you’ll be on those for life but we don’t really understand whether they are doing any good, we’ill just prescribe them and you’ll just take them”. They’re a risk reduction strategy but they’re a shotgun. we can say is that on average an average person as a part of a population has a reduced risk as a result of taking them. We can’t know that they have efficacy for any one named individual however.

Pretty roughly the first 6 months sees improvements from the brain tissue that was damaged being cleared up by bodily processes.

After that neuroplasticity becomes a potential if one fights against learnt non-use, and uses muscle repetitions to fight muscle atrophy, tendon shortening and nerve shortening. BUT also repetition in a very mixed and varied context is required to promote discovery and reinforcement of new brain pathways. That is, there are two different forms of repetition needed: one for muscles, one neuroplasticity. If you think of the development of a baby from babe in arms to toddler through to able to draw or walk gracefully you can see that it is process that is measured in years not months.

A stroke survivor probably brings less neuroplasticity but more purposeful understanding to the process of building capability, so on balance, if you’re lucky, maybe progresses at the same rate as a toddler?

Hope these thoughts from my journey from day one to two and a half years post are helpful

Simon

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