I have just found this, what I hope to be a helpful group, I am now 63 years of age and suffered a number of strokes in August 2012, there is a little confusion on this as it all began when I collapsed in a meeting at work and was taken to the local A&E where after a while I was diagnosed as having a chest infection and sent on my way.with a fistful of antibiotics, I felt very ill for the following week and could not return to work for that week, however after returning I found after an hour that I had suddenly lost the use of my left arm and hand, I went to my GP who suggested that I had suffered a stroke and called an ambulance later at the same A&E his diagnosis was confirmed and I was admitted to the stroke ward, as my then wife was a medical professional the stroke doctor discussed my case with her, however she was confused when the stroke doctor refered a number of times to my stroke of last week and it transpired that the MRI scans had shown a previous scar on my brain which indicated that I had suffered a stroke the previous week and not a chest infection after all, I stayed on the stroke ward for a couple of weeks where I had a little physio until being transfered to a rehab unit where physio was increased but centred on my left leg who's use of I had also lost, which enabled me to leave this unit approx3 weeks later with the use of only a walkingg stick, my wife and myself had decided that when I left we would relocate back to out home town to be close to friends and family, who had commited to support my recovery, prior to leaving the physiotherapist who was excellent prepared a report on my case with detailed proposals of continuing my physio which he sent to my new GP, however he simply refered me to a stroke consultant assuring me that all reports e.t.c. had been passed to him, I was allocated a stroke nurse who called occasionally for about a year until she retrained for another position and an occupational therapist who provided me with a number of plastic items designed to make my life easier such as a belly press clamp, however I recieved no further physio, my GP advised me that my stroke consultant would organise anything I needed such as that, unfortunately he found it more interesting to make jokes about people who had suffered a stroke rather than help in my recovery, he did however after one examination suggest I see a surgeon to reduce the length of a number of ligaments in my arm to allow my hand and fingers to stretch out, I underwent this operation but had no improvement, the bottom line is I had no physio on my arm and hand and both my GP and consultant have told me that it is not even worth trying after 7 years yet I remain optomistic and trawl the internet for anything which may offer a little hope, hence my being here now, whilst I still use a stick to walk, my leg still being weakand I am able through sheer determination move my left arm in a limited manner I am still unable to get any use from my hand other than use it as a mobile weight and I would welcome any suggestions anyone may have
Hi Dave. Welcome to the forum. I have no medical knowledge so cannot advise re operations or how your hand has fared after seven years. I do know that support for survivors varies from area to area and your experience sounds pretty bad compared to mine. I am three years post stroke and have had lots of support and physio. When that ended I joined an Active Seniors exercise class locally. I now go to three of these a week. In the beginning I could barely keep up with the others. Now I do pretty well. Mark, our trainer, encourages us to work to our ability and devises exercises for strength, balance, legs and arms. We end each session with five minutes of seated Tai Chi, which has stabilised my arm and hand enormously.
My left leg and foot are much better than they were, but I continue to work on the arm and hand. I utilise the arm and hand whoever I can. I try to build on the movement I have, no matter how small or limited. I also use the weak hand as a stabiliser to enable the good arm and hand more effectively. I think I am still inching forward. My key bit of advice is to keep at it, no matter hoe boring and repetitive the attempt is, I still get frustrated and angry and I have my down days, but I carry on and will do till the end. I do not know whether any of this helps, but wish you all the best. I am now 75 and time is not on my side as much as it is on yours. Keep at it!
Dear Dave
Welcome to our little forum. Your experience will be very valuable to many of us and hopefully you will get a tip or two from some of us.
What a poor effort by the NHS. Things have improved over the past seven years. Although each area is different.
Can i venture to suggest that it is never too late to get some recovery. Do please keep on with movement of your errant limbs. Any help is valuable, but you are the one who will make the recovery. Others cant do it for us.
You seem to be quite positive and that always works in your favour,those of us who get some success with recovery are the positive ones.
I wonder what the last diagnosis was for you ? I hope you have a copy of the discharge hospital letter, sent to your GP. You should have a copy of that and it will clarify things to any professional help. Its also useful for form filling etc.
John and I are two of the more senior people who post here and it will be so good to have your goodself, who is 4 years further on than John and I.
Do you contact the stroke association, does it cover your area. Do you attend any stroke groups.
I am now getting nosey so I will now close.
Be positive
Smile a lot
You are not alone
Colin
I’m hoping I’ve joined the right forum. Anyway here I go. I’m a 56 year old woman. Happily married with a 25yr old Son & 22yr old Daughter. I’ve worked as a flight attendant for the past 25years. At the beginning of October 2018. I had a spinal stroke. I’m hoping to meet others on this forum who’ve had the same. I don’t know anyone to compare with. All internet searches about spinal strokes are about those unfortunate people whom are now double incontinant & can’t walk. I feel very fortunate that I don’t have either of those. I do however have other symptoms...Weakness in both hands, especially my right hand. Numbness from the middle of my breasts to the tops of my legs & patches of numbness in other limbs. I’d really like to hear from anyone else who may have similar symptoms to me.
Hi Welcome aboard, I do hope you hear from others who have had a spinal stroke, each person is effected differently by their stroke. All though I feel stroke fatigue and numbness is common factor across the stroke spectrum which most of us have an issue with. Good luck.
Hello...My name is Ted and I am a 76 year old semi-retired engineer.
I had a stroke and the end of Jan 2019 with very similar effect to you.
weak right hand and weak around my middle so walking does not feel too good, get a bit weak and tired at the waist and legs.
Overall there has been improvement, hand a bit stronger, etc.
Not incontinent, physiotherapy is good and helps. The most uncomforatble thing is periodic tingling and burning on the skin of my right arm so have been prescribed Gabapentin. This helps the burning but has side effects like dizziness specially in the morning, having taken - 300mg tablet the night before.
Are you getting stronger, ie less tired? Are your hands getting stronger? Do you feel depressed? Do you see a neurologist?
Hope you are feeling better
Ted
Hi. I've just joined and making my way through the website. I had a spinal stroke last year and diagnosed with a fairly rare condition called brown sequard syndrome. I have been fortunate in many ways and was soon up and mobile however I have constant sensory symptoms down the right side of my body from shoulder to toes including what I believe is called a 'ms hug' an sciatic type sensation down my left leg. I was hoping to share my experiences with others who have something similar. I'm back working full time but happy to chat more.
Hi, I've just joined, I'm a 54 year old woman and suffered a stroke at the beginning of March, scans also showed that I have suffered a previous stroke which I didn't know about. I have been very lucky in that my speech and movement have returned, I have trouble swallowing and I'm currently on fork mashable food, I'm hoping this will improve and would love to hear from anyone who has had swallowing problems. I also have the sensation of pins and needles in my right hand and I also feel extremely tired all the time. I haven't returned to work as yet.
Dear Sunflower
So sorry to learn of the stroke but welcome to our forum.
Hopefully some fellow sufferers with swallow or pins and needles will ride in to talk with you.
Lots of us get the tiredness and I am one of them. My diagnosis includes "post stroke tiredness" but that medical term doesnt reflect your tiredness. I call it stroke fatigue or SF for short.
For the early months I was advised not to fight the tiredness but to rest and sleep, which I did. It eases over the months. I like to think it is the brain closing me down whilst it repaired itself, but thats probably just a good way of insisting I rest. During this time your brain will need extra water to quecnch the bubbling cauldren in your brain.
I suggest that few can return to work before about 9 months and then it should be a phased return. Its a long journey. If your workplace has HR then speak to them, but do check thay have someone with good stroke knowledge.
Recovery might be six months or it might be six years. Every stroke is different.
Do smile a lot and be positive.
You are going very well so far. Well done.
Best wishes
Colin
Dear Colin
Thank you ever so much for your message. I am still trying to get my head round all of this, my husband Colin has been a great support as have family. I will take note of what you have said and try to be positive and smile more. The thought of returning to work fills me with dread at the minute.
I hope you are doing ok.
Best wishes
Sunflower
Hi Welcome aboard, I had my stroke 18mths ago, I only returned to work two days a week after a year off, please dont rush things, go back when you a ready, and make sure your employer understands the issues, especially stroke fatigue, which is the tiredness you feel. I still get it and have a great head teacher. I have been getting a tingling sensation on my face, but was not left with any swallowing problems. I have a slight balance issue and use a stick when out as people tend to allow you a little more time and room, and it helps my balance with uneven surfaces.
Have you spoke to local stroke coordinator they may be able to give you advice on the swallowing?
Good luck and remember don't rush things your doing well considering it was only in March that you had your stroke. Wendy
Gosh yes, I bet the thought of work does fill you with dread.
That hopeless feeling has steadily drifted away from me and now I can do a few things. I moved all the lounge furniture arouns, dusted and thoroughly vacuumed. My cat is not impressed. The look on his face when he saw his scratching post had been cleaned and moved was a picture. He has now forgiven me and sat on my lao for an hour. Well he partially sat on my lap, he is far too big to get his wholeself on me. I reckon he is really a small puma rather than a domestic cat.
After writing to you I began wondering what your diagnosis spelt out. It seems different hospitals say different things. I was in Colchester and they have a fabulous stroke unit. Luck of the draw and it certainly worked for me.
It is so good that your family are supportive. Not many are that way.
Best wishes
Colin
Hi Wendy, when did you start to get the tingling feeling on your face, when I left hospital I didn't have the pins and needles in my hand they only started about two weeks ago. I'm still under Speech and Language for my swallowing which is good as I feel that since coming home I have just been left to get on with things. I am currently waiting for a follow up appointment with the consultant.
I understand what you mean about people giving you more room and about uneven surfaces as I also have congenital rubella which caused blindness in one eye and hearing problems so like yourself I feel uneasy walking on uneven surfaces. Thank you for your message it is really nice to speak to someone who has gone through the same thing and I hope you are ok.
Wow, you have been busy. I'm currently waiting for my follow up appointment with the consultant, so we shall see what he has to say. I'm up in the North West, the staff at the hospital were fantastic.
Have a good day.
Hi Richard, not sure how this works but maybe you'll get this...
My story is very similar to yours, stroke at top of spine, diagnosed on Feb this years theyand they found it difficult to diagnose! Right hand affected and very slowly getting stronger, also a weird clamp-like feeling on torso.
I can walk reasonably well but not for too long as standing for long gets painful in my back. Do you get this?
Good that you're back at work, well done.
I also get a burning surface tingling on my right arm and that is probbaly the one thing I'd like to get rid of. I take gabapentin for that but its strong and I don't like taking it.
Do you have a similar problem. Any ideas
Best wishes
Ted
Hi Ted. Good to hear from you. Somethings are similar. Not so much of the burning you experience. For me the clamp like sensation is very bothersome and I'd love to get rid of it.
I've recently been to a spinal injury unit to look at the symptoms from a different angle. They are talking about strong neural painkillers (pregogabilin or something?). I'm a little dubious because of the side effects e.g. drowsiness affecting work. There is so much more to say.
I'm not great at writing on websites. Happy to chat about it over the phone if you prefer? Kind regards Richard
Thanks Richard. I understand and there is a lot to say about all this. My email address is palmted@gmail.com and if you email me your phone No. I'll give you a call later or when you prefer.
having another MRI scan early afternoon...
cheers, Ted
Hi Richard,
Not sure if you got my reply to your post/note, trying to get the hang of this website and probably getting it wrong...
It would be good to talk about your snd my findings by phone any time at your convenience. If you email me your number I'll call you. Best wishes, Ted .... palmted@gmail.com
Hi All! This is my stroke story.
A busy year in 2018 - writing plays for youth theatre, completing an MA in archaeology, a dig in October and a short New York holiday end of November. I felt good!
I had a niggly blocked ear (but no pain) and soon after developed odd blurred/ double vision when reading. I changed several pairs of glasses thinking my vision (having spent a year researching on my PC) had deteriorated. But problem continued. I visited my GP who suggested it was possibly the onset of a migraine and also suggested I had an eye test. Which I did - vision appeared fine.
In mid November I was writing a short play and noticed my spelling was awry, not massively bad, but unusual for me - again no pains no immediate symptoms. Managed to spell check most of it! On my return from NY at the beginning of December I lost my words - or words that meant sense at any rate! Again no pain or symptom - but bad jet lag after the flight. Immediately went to the GP (well it took a week to get appointment!!) who took a series of blood tests. Returned the following week to get results - he said everything was nearly normal - maybe odd sugar suggesting Diabetis Type 2. I knew this was not right - I had thought maybe onset dementia was the most likely cause. I hadn't even considered a stroke!!
I spoke to a friend on the phone that night and he (an osteopath) said - get yourself to a hospital - book an MRI. I phoned to gp to get a referral the next morning (18th December 2018) and went to local Ambulatoy Clinic the next day.
Diagnosis:- 'a series of strokes'. Ischaemic changes in both middle cerebral artery territories and extensive damage on left side.
Happy birthday Nettie - have a good Christmas!!!
I had mild weaknett in my right arm only but all the other symptoms were visual, oral and cognitive. Everything I do involves these three key skills. It was devastatling - everything stopped for me.
I pushed myself to try and read, I made myself talk - although the language I used sounds archaic, and perfected writing intelligeable shopping lists!!
4 months later:- I am reading (lots of books, it's good with normal sized print but not so well on I Pad or tiny print). Writing is fairly normal - at least I can understand what I write.
I was discharded on first Speech Therapy visit - not bad enough to treat by them. But still speech with a mouthful of tongue. I still talk to everyone (sometimes embarrassing) to improve my speech.I'm not quite there. Also - I am cheek biting and sometimes sound like Gopher the beaver from Winnie the Pooh!! So if anyone has suggestions to get my tongue a bit more mobile I'd be grateful!!
The hospital Opthalmologist discharged me saying superior loss of vision but OK to drive, passed my driving assessment last month but then the DVLA intervened and said before I could drive I had to go to SpecSavers for an eye test too (!!!!???). I got 100% on that and haven't heard anymore from DVLA - so assum they have not revoked my licence.
I get brain ache in stressful situations and have lost a lot of confidence.
After the initial battles to 'get better' - lots of new challenges, fitness, diet etc and achieving a lot - now realising this is me now - less than I was, slower, more deliberate, sometimes fragile. Happy to be alive...but sometimes so sad.
Hi Nettie, Welcome to our forum. You appear to be doing well, so keep up the good work. Many of us miss past activities we can do no longer, but at least we have survived. Like you, after my stroke three years ago I had to change my diet and lifestyle. Paradoxically, Stroke made me quite creative. I spent my first year of recovery writing a haiku poem every day, partly as therapy, partly to celebrate the ‘ordinary’ things of every day that I valued then, and now, more than ever. Good luck on your recovery journey.