Worried

Hi my name is tommy I'm from Liverpool.i had my stroke in October last year I am a type two diabetic and thought I was having an hypo it wasn't till my daughter came to see me that I had a stroke I am also a double amputee so even more problematic just want to know how to start my recovery 

Tommy so sorry to hear what you have been through.  During this lockdown especially, please stay at home and REST as much as possible! It's early days.  Don't rush your recovery, or take chances, and your body will know what it can cope with.  Listen to it and take heed! If you have serious worries, you can contact someone professional here, online or via the telephone.  You are a star, and keep well x 

Hi Tommy. Very sorry to hear of your stroke. Have you been given any physio support at home? I am four years post stroke and was not allowed home until alterations were made so I could cope. I then had physio to help me use my kitchen and move around properly. After that I went to physio once a week for nine months where they worked on improving my balance and hand movements. Not all health authorities provide this level of support though.

My first year if recovery was quite good but require a lot of effort and determination. I was clumsy and broke things, I had a few falls and terrible post stroke fatigue. One of the best tips I had was to use the weak hand as much as possible. Walking was a real effort. I still rest every day for an hour at noon.

I would echo the importance of rest and not trying to overdo things, but to keep trying. Four years on I feel much more myself, but keep things in perspective. I used to dream of running, but, in reality, I won't be running again. The best I can hope for is more gradual improvement. In any case, I am now 76, although still optimistic.

I wish you all the best.

Dear Tommy

What a rotten set of circumstances. 

So what can we suggest .....

This miserable corona makes us all stay home,but that is exactly the right thing to do in early stroke recovery. Rest. The reason behind this is that the stroke has left a part of your brain out of action. Your very clever brain will work around that damage. But it needs to close other brain functions down whilst it is working. So if you can learn what your body is saying then you will know when to rest. Although we descibe tis as listening to our body, it is in fact just your barin. The stroke does not damage your limbs etc, just the messaging from your brain.

Medical people describe this as neuro plasticity.

So if you can establish when you need to rest then you can also establish when you are free to be active. Please note that active means all sorts of non physical stuff like hearing, seeing, thinking, decision taking and so on.

Our recovery is so slow. We cant really see the improvement, but it does happen. I have kept a stroke diary in which I record every day. I can see from the diary just how much progress I have had. But I cant see that in me on a weekly basis.

It might suit you to make "goals". Write down your goals and check them every week. I did goals and then I added signposts to each goal. We are all different.

I will shut up now as I talk too much

Smile. Be positive. You are not alone.

Colin

 

Hi Tommy and welcome.  On your discharge, did the hospital give you any indications of what help you might receive such as physio at home in the early days, GP follow up appointments, any leaflets on what to expect?  As John says, every health trust is different. I got nothing in hospital except a small 6 page leaflet with physio exercises to do at home. I did get 3 visits from an occupational therapist who came to my home after I came out of hospital. She showed me how to do the exercises in the leaflet but only came 3 times. Everything thereafter, I have paid for myself  except 3 NHS physio appointments which were a complete waste of time.  Lots of talking and general waffle but no hands on treatment.

As you are now 6 months post stroke, you will probably still feel stroke fatigue daily.  Hopefully, you are getting on well with the medication you should have been given by your hospital/GP.  Rest is paramount as others have said in the first 12 months and beyond. Your brain has a lot of re-wiring to do and if you try to do too much, your brain will shut you down and it will take days to recover.  Everything will feel like one step forward 3 steps back but with rest, gentle exercise and perservence, everything will slowly click in.  If you can sit outside and feel the fresh air/sunshine on your face, this also helps if you have a garden. 

Lovely photo - baby has such a curious look on its face !

An afterthought:

We should move every muscle that we have. Just a wiggle or a lift. That will keep the brain aware of what it is controlling

Colin

Hi Tommy welcome aboard, together we all face a journey, one of little steps a lot of the time.  It might be a good idea for you to ring the stroke helpline and ask if there is a stroke coordinator in youre area.  Mine was amazing a lot of help and advice, lots of leaflets, which you can get on here as well.  Help with filing out all the dreaded forms and a lot of encouragement.  We are all here to listen even on bad days when you just want to rant, believe me we all do it.  Good luck keep us posted.  Wendy