There was a period of time when a few tv shows were filmed in Swansea. A chap who i supported after his stroke really enjoyed his time as an extra on the tv show Da Vinci's Demons. He got to hang out with the stars and got fed really well.. he even got a speaking part.
I'm 3years post stroke and still struggling to accept what has happened.
In my experience after care for stroke survivors is non existent. (in Kent ). I had no knowledge of the Stroke Association when I was discharged after spending 12 weeks in a rehabilitation unit. I have never seen a Stroke Coordinator.
To be honest, immediately after suffering a stroke I was not in any condition to take everything on board and feel that this sort of thing should be put into place by the hospital before you leave. Often we found that the different departments within the NHS do not work together and just make your journey more difficult. When I was discharged I was given 7 one hour physio sessions as an out patient in the rehab unit gym and one year after being discharged I was contacted by our local Bexley Neuro Rehabilitation Team and was allocated another 7 one hour sessions at home !! That was the total amount of help given after spending 5 months in hospital. Everything else we have had to fight for and pay for.
As other survivors have said, the emotional trauma of suffering a stroke is also difficult to deal with. I saw a brilliant Neuro Psychologist when in was in Rehab but again that stopped the minute I was discharged and I have been unable to find a counsellor who deals with stroke survivors. At one point my gp said he thought I was suffering fro PTSD, but still no help!!
I'm sure that dealing with stroke survivors is difficult, as no 2 survivors are the same but it's about time that someone somewhere got their head around this please !! Thank god for this forum, I have received some great advice over the past 3 years. Thank you everyone
Regards
Sue
I am not a stroke survivor,or carer but a mother of a young stroke survivor 32.
I look at this sight everyday and it has helped me to have hope that my son will have a life worth living. Thank you all?
Many stroke survivors are truly inspirational people,it is such a shame that they have to battle for every bit of help as well as their on personal battle towards recovery.
1 year on from his stroke I am certain that he will make a good recovery,not full but he will lead a good life. This has been achieved by hard work and true grit with his family supporting him all the way.
Hi Sue
I am 4. 5 years post stroke and plodding along. To paraphrase Marvin thevparanoid Android(hitch hikers guide to the galaxy) :thecfirst 3 years are the worst, and the second 3 years are the worst as well. Coming up to thev5th anniversary, next spring, I did have a bit of a dip. I was fortunate though to have had some good support in the early stages of recovery. But like you, now discharged. The longer term support is difficult. There are a few longer term survivors on the forum. Don't have a collective noun. Veterans doesn't seem quite right. Anyway what im facing at this point is a kind of mental reset or reorientation. It involves both an acceptance of my disability. (I was affected very badly physically with significant loss of function in my left side) and a restart in work towards regaining whatever function is possible. The attitude is different from the early days when recovery perhaps seemed nearer or more possible. As time goes on it is sometimes a struggle to believe that things could still improve. But in spite of that I am still alive and can do something, even as disabled.
So keep up the hope. Things are different at 3 years but theres stuff cto do and a life to live
In solidarity
TONY
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Hi Tony
Thanks for your reply,
my left side has also been badly affected and at the moment I have very little movement in my left arm and hand. I do regular daily exercise on my arm, to keep a good range of movement in case it does start to work again at some point but as you know it's a daily struggle to keep battling on.
I turned 60 in July and have never worried about "old age" before but now I am forever worrying about what will happen to me when I'm older or if something happens to my husband, who has been an amazing support and has been by my side since my stroke. I have had many a sleepless night going over what will happen to me !!!
Regards
Sue
Hi, so pleased to hear that your Son is doing so well. You may find this website useful for your son:
different strokes.co.uk They are a UK charity providing a unique service to young stroke survivors.
I attend a weekly support group local to me in Kent, which we have found to be a great help in many ways.
Regards
Sue
Hi, I think there are some groups for young stroke survivors which may be helpful. Not sure where to signpost on this site, but maybe if you search the forums you'll be able to find the information.
I too found this site so helpful and informative - I learned so much from the comments and stories of those who have suffered but survived.
All good wishes, Nic
Thank you Nic
I have looked at Different strokes website also some very good information. In fact I have trawled the internet,dismiss negativity immediately so I can find the positive points that can help my son .
Thanks Sue
Yes different strokes is great I have used it a lot.We do not have a local group here but the Stroke Association have been very helpful.
So hard for you, but your support and understanding will be invaluable. You may have noticed that there are quite a number of young stroke survivors contributing to this site. In many ways that's a very sad situation, but at least your son will find others within his peer group who can offer support and encouragement.
Best wishes xx
Thanks Jason. I have discussed the CBD issue with both my docs, and I am getting it from a reputable company. I don't take it for stroke recovery, per se, but for some of the symptoms that I went through right after my stroke--Leg spasms so I couldn't sleep and anxiety. About an 1/2 to 1 hour after taking it, the spasms would stop. A nurse at the hospital had clued me into this, but of course docs can't prescribe it as there has not been enough research done. My doc told me that she has several patients that use it, and both she and my cardologist are ok with it. Just felt I should pass it along as it might help someone else.
Hi Sue, you are right to keep working on the range of movement. Keep doing shoulder exercises the rotator cuff muscles ar the joint can easily strain if they are weak, but steetching exercises do help. I am similar age, and my wife has been an absolute rock. I turn 62 in September. Had an absolute nightmare getting back to work, probably too soon. 2 years ago. Didn't work out and was very stressful. I ve no idea how I would cope if anything were to happen to my family support. I try to put those thoughts in the "unhelpful" category. Some of the mindfulness techniques can be helpful in coping with these thoughts. Btw perfectly normal to have those worries we all do. Can you talk about it with your husband? I ve been very fortunate to have had stalwart support from my wife There were times I thought I was going to lose it mentally. Always had mood swings but became much more anxious post stroke. It is a common experience. I tried a bit of psychological talking support, was not quite what I needed, turned out to be a lite version of cognitive behavioural therapy, helped a little. But the counsellor was not very experienced. I was able to self refer but could have got a GP or occupational therapist referral.
Keep up the great work. Some things get easier as time goes by but it is a hard slog and a long haul. Very difficult to adapt to the new situation. Never what any of us expected or wanted. Certainly didn't fit my imagined version of myself in my early sixties. But life goes on. I didn't die, so am trying to build up something of a new life as an aging disabled person. Nothing easy about that! I understand but find it difficult when some say you have to embrace the "new you" it makes it sound like we've had a makeover, where in reality the world has turned upside down, you don't get to grips with that overnight. Another experience, hard to express is grief not only whats been obviously lost but also about lost futures. Plans and dreams we cant now fulfill. I had started to enjoy long distance country walks before the stroke and had just completed the Cleveland Way in North Yorkshire 110 miles, in my mind it was to be the first of many but it is lost now and causes me much grief.
Working on what I can do in my hemiplegic condition. Some things are happening. The future is very unsettling so I do find meditation helps to ground me in the present. It isn't the cure for anxiety but it helps me generally. Hope you can find some peace. You will.
In solidarity
TONY
Fellow survivor
Hi Tony, thanks for your words of wisdom. My husband has been an amazing support and I can speak to him about most things. I do try to keep those worries to myself though, I don't like to burden him with too many worries, I know stroke is also very tough on partners and families as well as the survivors. I find it difficult when people tell me " You are lucky you survived, many do not". Well sometimes I wish I hadn't !!
Keep up the good work.
Regards Sue
Hi Tony ,I am also 62, stroke 1 year ago bad fatigue , mobility & left side weakness. About 3 months after stroke, bad pain in left shoulder & arm joint . Now especially in bed can sometimes feel someone is pulling my arm out of its socket , such a jolt , can't catch my breath ! I have been given some exercises, but not much help. Would much appreciate any advice.
THANKS DAVID .
Dear David
The first year was crucial for sorting out the shoulder pai. I suffered very badly with that and what the physios call subluxation where the muscles are so weak that the weight of the arm pulls and strains the rotator fuff muscles which are a group of small muscles at the joint. You can see that i questioned my physiotherapists very closely. I did a set of arm exercises every day for about an hour for several months in the first year and it strengthened the muscles enough to ease the subluxation and the pain. Which was excruciating at times. I now have no shoulder pain in my left shoulder thankfully. I occasionally notice a bit of a drop and slight gap between the clavicle and the top of the arm. But what i do now is try to move the shoulder in as normal a way as possible to keep some strength and activity vinbthe shoulder. Seems to be working. I don't think I have the same focus as I did inyear 1, the challenge at 4.5 years post stroke is mainly emotional
I experienced fatigue greatly throughout the first 2 years post stroke. It isn't so bad at the moment. I kept a log to track how I was feeling and to see if I could identify any particular triggers. Key trigger was emotional stress. And from late year1 through year 2 I had bucket loads of that, as I had managed to get back to work but during that time it all went south. In the end I lost my job, was a senior manager in a small charity that wasn't doing very well and became a very toxic place to be. Still recovering from the after effects over18 months since leaving. I wish i hadn't gone back I really wasn't well enough. But I had to. At the moment I don't have to work as I am officially unemployed and claimed ESA and was put into the support stream which means i don't have to look for work. I am very relieved especially in the current covid situation. Id be utterly screwed.
Give me a shout any time and I'll share any insights I may have gained over these very difficult years. Its been a tough time for sure.
Ps the upper limb exercises are in a programme called GRASPD which vis available free online it was developed by Canadian professionals so I think it is under the banner of a Canadian University a bit of Internet searching should flush it out for you. Sorted my shoulder out. Still have very little actionbin left hand but haven't given up hope.
Stay in touch
Best wishes
TONY
Hello Tony,
I found the website for GRASP and watched the video on shoulder pain. Thanks for sharing that. It is very useful for John.
V&J
Great, it worked for me you have to do it every day for weeks. Yep it is tedious but better than the pain which I know is agonising. Keep at it. It will work.
TONY
Thanks Tony for your help, I will be looking this up. I also get shots of pain in crook of arm ,poss similar to shoulder ? Mostly when in bed ,did you experience similar ?
1 year on decided on poss mobility scooter, my wife might lift into car (Luggie ?) Poss second hand ? Have you improved enough not to bother ,or does your fatigue still hit you .
Good to speak with you, David .
Hi David
Fatigue is still an occasional issue but not as distressing as it was. I actually managed to get back to driving and had my car adapted for one handed control. This was during year 2 and into year 3. Unfortunately I had a minor scrape with a roadside barrier and, dented the left side quite badly. No one hurt! Insurance company refused to repair insisting on writing it off even though it was repairable. Repair shop wouldn't do it privately either and was just too complicated to find an alternative repair shop, so in the end accepted a pretty decent deal from insurance and now no longer drive. I wasn't enjoying it much to be honest and in some ways glad to be relieved of the burden and expense of running a car. I began to look into a scooter or even powered wheelchair. Thats on hold at the moment, maybe cpick up again next year. I be interested to know how you get on with Luggie if you decide to get one.
For the next few months I have decided to focus on getting my walking improved. Left leg still very weak and not behaving all that well. I hd difficulty with foot drop bu got an FES machine from my local neuro rehabilitation team. Been using it for about a year. Foot drop has actually improved but walking is still very laboured. I still feel there is further to go with it but some days it feels daunting. I used to walk a lot and really miss it. These days the challenge is more mental than anything.
God luck with the scooter do let me know if get one and how it works out for you
Best wishes
TONY
My advice is that things will get better as you learn to adapt to the new you.
Never give up .You will get setbacks along the road but you can overcome these and move forward.
I had a stroke in October 2009 and the first 18 months were difficul for my mental state as I struggled with the impact of what had happened to me.
Slowly I found the motivation to stop feeling sorry for myself and to get out and see what I could still do.
11 years later I manage to do most things albeit with some adaptation.
I was an expert skier and have relearned how to ski with defective field of vision and poor balance.
I am no longer allowed to drive but travel to the far north of Scotland by overnight coach and a series of buses to hike camp and fly fish for brown trout in the midst of a wilderness.
Good luck with your journey
Tony