Quite an interesting article in today’s Mail on Sunday, which probably many on here can identify with. I certainly can, particularly with fatigue and emotional instability. The article highlights the issue which is good, but there doesn’t appear to be any action to improve things. I’ve added the link to the online version below.
This bit I found so pertinent as many many of us discuss this not just physical issues but mental too and issues with post stroke care and help for carers
Stroke survivors are struggling with debilitating muscle problems, pain and depression unaware that these symptoms can strike months or even years after the initial attack, doctors have warned.
After being discharged from hospital, stroke patients are typically given a three-month package of care that includes hospital visits and physiotherapy, but are often ‘left to fend for themselves’ once this ends, say patient advocates.
JP tells me the article is by the Mail’s senior health editor who is ‘excellent’.
Barney is an award-winning health reporter and editor with two decades experience on the beat - and a remit that spans breaking news, feature-length interviews and analysis, in-depth investigations, comment, and everything in-between. He launched and continues to run Britain’s biggest, best-read specialist newspaper health section - approved by doctors, it aims to inform, challenge and entertain, while holding the medical establishment to account and always keeping the needs of the reader at its heart.
Hi, I don’t like to complain but these articles make me so angry. Where do they get their information from ??
" Stroke survivors typically receive a 3 month package of hospital visits and physiotherapy". That’s definitely not the case in the South East. After being discharged from hospital, I waited for 12 weeks for physiotherapy, which consisted of 1 hour once a week for 7 weeks and 1 hospital visit . Almost every other therapy or treatment I’ve received, we have had to pay for and are still paying for after 6 years .
As we have all said time and again, Aftercare for stroke survivors is a postcode lottery.
I agree, it wasn’t the case for me either, I live in North Lincolnshire and was just given a sheet of balance exercises to do at home. The Occupational Therapist visited me once. I could still walk but not far and very wobbly, and have made a good physical recovery so maybe I didn’t need the physio. I didn’t have a hospital appointment again until 3 months after being discharged.
I thought the points being made about the lack of information of long term effects were interesting though, certainly nobody talked to me about them.
Definitely agree. No one spoke to me about anything, only came across the Stroke Association by chance. Hospitals and Rehab units should be giving out information on discharge. Luckily we found a stroke support group local to us , through Different Strokes and found out so much through the other members there.
We have since delivered a stack of leaflets and information to the ward at the hospital where I spent 12 weeks in rehab, whilst I was there visiting for botox.
@Pinch always makes me smile when i read these articles as I’m not sure anyone gets what they say in the article.
I was one of the luckier ones in that respect I think. I did get 6 weeks of home physio (twice a week). I then had to wait for more physio which probably averaged put at once every 2 months for 12 months. I had a couple of occupational therapy visits but when she retired I got forgotten about.
The idea that if they gave everyone the treatment & aftercare they need at the start it may stop a lot of problems later on should definitely be worth them exploring though.
@Pinch I’ve written to this subject before. I was doing very well 6 months into my rehab and then late onset spasticity hit me on the whole right side. It is a misery and seems no matter what I do I can’t get rid of the rigid muscles. I’ve had many good therapists and they kind of turn a blind eye to spasticity…they don’t know what to do with it other than stretch, stretch, and then…stretch. Drugs don’t do a thing for it.
I suppose there are many “late onset” problems with this evil thing we call stroke.
I especially hate it, detest it, today as it is chilly and heavy rain making it worse than ever.
I hate that articles are too short to cover all the issues we face, but I love that in writing any article they are call ing attention to issues to address, even just a little at a time. Bringing attention in media is one of the fastest ways to get better help.
Firstly, I respect your point of view., but I also experienced this turn of events around the 6 month mark. However, my thinking of it is very different. Before the 6 month mark, I think the muscles enjoy a residual tone from before the stroke ; after that, the muscles spasm, cramp up, misbehave, but they are under new management. Before, they were withering, passive, paralyzed, if you like. The the “new” brain then develops connections (slowly, step by step) to the same, or even new muscles. So it’s a step towards progress. A muscle that spasms is better than a severed muscle. I’ve expressed myself a bit roughly, but that’s my understanding. It often gets mistaken for a step backwards, whereas what is happening is a process of evolution and development. In time the “new” brain will strengthen its rapport with said muscles… providing we use them more and more… strengthening the connection with the brain.
Then if we can free our brain of clutter, and negative thoughts, the process can accelerate even more. Because we have older brains, our thoughts are set, and rigid. We have to keep the path free, uncluttered, and dare I say it once more, have complete faith in our recovery. Only that way can we succeed …
@pando Thanks Roland I hear you: But…this from Minnie B.
"I have the same problem. My spasticity didn’t kick in until about 4 months after my stroke. Some days are better than others, depending on how much exercise I do/don’t do, how humid or cold the weather is, etc etc etc. Sometimes I feel as though I’m making good progress, then sit down for a few minutes and BAM! I seize up all over again. This week has been awful because of a new rotator-cuff exercise, which has left me with a bicep made of concrete. On top of that I was attacked on the bicep by a vampire gnat and now have enormous red lumps on my arm!
Meds haven’t helped. Along with others on this site, I am now going down the CBD route, but it’s too soon to tell whether it’s going to help.
I just wish the scientists would come up with something soon. I’ve had nine yearsof this. There are research projects on stem cells etc, but nothing concrete on the horizon (unless you count my bicep!)
Minnie has had this for 9 years godbless her.
For me it could take longer. I’m in my 70s.
I am counting on every thing you say and agree. It is a hard road.
To all who read this, Roland is right about attitude and faith.
@EmeraldEyes Haven’t looked that up. I know that MS patients have a terrible time with spasticity and also Cerebral Palsy patients as well. A good friend has a wife with MS and she suffers from it. Again, she tried baclofen, gabapentin and lots of stretching.
The guitar player in my band has a grand-daughter with CP and she is too young for the baclofen pump, but it is in her future.
Hi, Im new to the Forum, but I read todays article in the Mail on Sunday. I strongly related to this as its 7 years since my stroke, but ive just started getting debilitating, muscle issues and pain in my weak leg and hand. Im worried about spasticity in my hand and foot. Its prompted me to talk to the Doctor.
Hi, after my stroke 7 years ago , it was the same for me, about 3 months intensive physio, then told I had better just live my life … determined perseverance got me where I am today, but recently started getting pains and I fear the possible possibke spasticity.
Stroke articles in general (not academic ones so much) really fail to describe the emotional and mental problems stroke patient have. They just say “anxiety” or “depression”, or something else along with it (sometimes “apathy”).
I know from my mother how complicated post-stroke life is from just the emotional/mental perspective. Sure, she made a fantastic recovery on a physical level (almost perfect walking, balance, reflexes, etc.), but she was mentally a mess, so much so that she more or less lost her mind over time.
@ Pinch I didn’t read this article, so I am not referring to it.
Hi @SueRat15 just want to welcome you to the club no one would choose to join if they could have avoided it. It’s a happy, friendly site full of support and some banter. Hope we hear more from you, take care