My world came crashing down when at 57 I had a heart attack. I was taken to hospital where I later had a bleed on the brain and a stroke, leading to left sided weakness.
Apart from a brilliant physio I had two months of horrendous days in hospital, treated mostly badly by incompetent staff, I came home to be cared for by my partner. The lack of care from home physiotherapy and occupational health didn't help.
I have spent the last year trying my best to "just get on with it", things happen with my body which I don't know if it's good or bad, I have no professional help at all, my partner has since been diagnosed with copd so I try to cope as much as I can on my own
Hi, you have had a really tough time. Where are you based? I was referred to physiotherapy at the neurological hospital in central London. (not the best journey) however i found they were much better informed than the 'normal' Physios, who in my case were fine, they treated me first. At the neurological hospital, it was a specialism. Can your Dr refer you? Additionally mine did as i had a Frozen shoulder too (brought on by the stroke, i was 47) and this was dealt with by a 'normal' physio. So i had 2 sets of physiotherapists. I know there are specialists in this field that work in normal practices, maybe one to discuss with your Dr. I don't know how good your Dr is, maybe change if he isn't great for you? I did almost immediately i had the stroke and was out of hospital. I find that chiropractic helps a lot. I have to pay, but as soon as i was able to see mine, she was excellent! Its all about opening the channels, so the brain can send clear messages to say the feet , legs etc for walking. I can tell you more if this is an avenue that may help. Good luck x
Hi Belinda, many thanks for taking the time to reply,I am base in surrey and was treated at st George's hospital tooting. My doctor is rubbish and I am in the throws of changing. The only good part of all of this is I am now able to return to riding which I have done since I was a child, although this is now at my local disabled centre it is the only help I get.
You say about a frozen shoulder, I think mine is dislocated due to the stroke but can't seem to find out if I'm right. I would appreciate talking more with you if that's ok. Kind regards, Karen
Hi Karen, Sorry for my delayed reply, I don't log on as much as i should!! Have you changed your Doctor yet? A good Dr should look at this for you, mine new as soon as i saw them - so painful, I didn't have a clue what i was dealing with, it even hurt to lay on it in bed and i would call out if i rolled over on it while asleep!. But I'm pretty sure i found out about it being linked to the stroke online. This from google 'Several studies suggest that Frozen Shoulder may be one of the most significant causes of shoulder pain after stroke. It can occur in up to 25% of individuals suffering a stroke within 6 months.' Are you on facebook? We can talk there. I'm always on as my work is around social media! How's the riding going? It must make you feel much better riding again. Kind regards Belinda
I feel for you, I had my stroke 7 years ago and have found like yourself that there is little post stroke support available, after 3 years of plaguing my GP almost begging him to find me decent physio, I reached your point of "just getting on with it myself" my wife was a senior blood science pathologist, with a bit of clout in her hospital but even she could not source anything for me as she found out "the support is simply not there to allocate"
it must be doubly frustrating for you with your partner naving copd and you shouldnt in this day and age in this country have to try to cope as much as you can on your own being disabled yourself and I do hope that as your original post was some two months ago that your situation has improved somewhat, if not could I suggest that maybe you contact your local CAB, I have found them most helpful, they have people who specialise in most areas and have contacts within a lot of specialised agencies, for both yourself and your partner I would expect that at a minimum you would qualify for a carer service.
Many thanks for your reply unfortunately nothing much has changed, I did manage to get into the Douglas Bader unit in Roehampton and have had a fes machine to use at home, although a tiny improvement not much has changed (I believe because it has been left so long) so am continuing to plod on. I hope that things improve for all stroke survivers but don't hold out much hope.
Hi Kazza, Very sorry to hear of your experiences, but every health authority varies. Mine was, and is, very good, but I won't dwell on that. I would suggest that if you have changed doctors you should ask about what help is available to you, especially physio facilities. I had an FES machine for walking and that helped enormously.
I have found that progress after stroke is very slow. My first year was a relentless battle to improve my weak left arm and hand and to improve walking. My stroke was also due to a bleed. Mine was 5 years ago and I still try to improve every day.
I was told by one physio to remember that the weak leg would improve faster than my arm and hand, because they perform less complex functions. I was also told to utilise my weak arm and hand as much as possible. Mine was also left side weakness. The arm and hand are quite functional now, but my fingers lack sensitivity. My left shoulder always feel frozen, but I had it checked out and it isn't. I just live with that sensation these days.
I do hope things improve for you.
Many thanks for your reply sorry it has taken so long
Many thanks for your reply and sorry for the late response