Hi Paul
I was just going to post my experience to the forum, but since it really addresses many of the same issues, I will paste it here. Covid may be part of the problem but there just isn’t enough support available to us on the NHS, and what there is, is not easy to find.
I had my stroke in September 2020. At the time I was a fit and active 70 year old with no underlying medical conditions. The stroke was completely unexpected and my introduction to being a stroke survivor was being told by a consultant that I had just been extremely unlucky. Not the most helpful information I have been given!
At first I completely lost the use of my right arm and leg, but my speech is pretty good and my mental faculties seem reasonably intact, although I was somewhat slow off the mark for the first week or so. Since the stroke I have been focussed on restoring as much use of my hand, arm and leg as possible. When I read the accounts on the Forum from those of you who had strokes at a younger age, I realise how fortunate I am in many respects. I was already retired and so my income was unaffected. I did not have to worry about family members so much, since the kids have left home and are making their own lives, and of course by 70 I had already done most of the things I had wanted to. At a very practical level, we still have local friends from taking kids to the school gates, and they are mostly retired too, so there are always offers of help. The downside of having a stroke at 70 is that people have very low expectations of you and I felt that some of the therapy was really just aimed at making sure I could get dressed and make a cup of tea rather than addressing my own ambitions to return to something more like my old life.
We decided from the outset that I would try to get back as much use of my right limbs as possible, and at that stage alI I knew was that it would involve a lot of physio. I never had a chance of a spell in the recovery ward in hospital, just 12 weeks of home visits. To make a real difference, my wife found a private neurophysotherapist in the area, and I am still going for two or three sessions a week, with steady progress throughout. One of the most useful things I was told was that getting back movements after a stroke involves learning what they involve from scratch because your body has simply forgotten. My grandson is 4, and suddenly I realised that the first years of his life had been spent learning how to move. It has taken him years working at it full time, and he still has room for improvement, so I should be prepared to put in years if I want to get decent mobility and function. Rather than setting aside blocks of time for exercises, I try to incorporate them into my daily activities as best I can. When I first visited the physio, my wife helped me out of the car and assisted me in as I walked with the quad stick. For the last couple of months I have been driving myself and walking in without any stick.
My shoulder was problematic at the outset. It did very little and was extremely painful if my arm was moved out from my body, even moving in bed. The breakthrough came when my physio suggested she use an old school method and taped my shoulder in place for a few days. That got over the pain for normal use, and I have gradually got back most of the range of movement by exercising a little every day. The NHS physios gave me FES for my hand, which kick-started the movement of fingers and wrist, and was also a great help. After a few months work my physio referred me to the local gait clinic for FES treatment to my leg. After about 6 months wait, I got fitted with a unit in October and now use it daily. By curing the foot drop it means I can walk faster, further but above all better. Most promising, I am now walking better even with it turned off, so lessons are being learned and I’m not just responding to the electric shock. I’m really hopeful of managing country walks of a sort next year.
I was surprised how quickly I got to rely on other people to do things for me while I was in hospital. My stay coincided with the start of a Covid surge, so no visitors and pressure to leave. In the fourth week I could begin to walk a little using a quad stick so the next week I was given a try at using stairs and taken home to see if I could live there. I could, and my wife and I had 2 day’s notice to prepare for my return which gave her an awful lot to do. One job was to source a single bed that we could put in a downstairs room for me and she asked quite reasonably if I could take that on. But it proved quite a mental effort to organise myself, even though it just meant using my phone to look up local bed shops and get in touch. Rather surprisingly I was successful, which was a good boost for my confidence. My wife did a superb job of balancing helping me when help was needed with letting me get on with things for myself when I could. True independence came when I discovered elastic shoelaces; after that I could dress and go outside without help. Then early this year she was diagnosed with breast cancer. Two operations were followed by 18 weeks of chemotherapy and then a spell of radiotherapy, just completed. It was frustrating not to be able to look after her as I would have liked, but I had to become more independent and more proactive, even if it was just to order takeaways for us. Fortunately, we have good friends who stepped up and really helped us both out, and the prognosis looks good.
Looking back over my experience since the stroke, I am struck by the number of really useful tips and bits of information that I have only picked up by chance. I am sure there are more that I don’t yet know about. From elastic shoelaces to the existence of therapies such as FES and to the possibility of getting back to driving, it would be good if the hospital and the community stroke team had a check list of helpful information to pass on to stroke survivors according to the issues that they are facing. Perhaps there is such a scheme but no-one mentioned it to me? Maybe this is something the Stroke Association could look at?
