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Am I disabled for life?


Eurocracy
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Hi everyone, I've been lurking these past few weeks and chatting in the ShoutBox to some of you.

I stroked in August of last year -it was a clot caused by Hughes Syndrome. I have left side weakness now but stopped improving since I left rehab in December. I can walk and talkbut my left arm is useless. I'm doing really well with my right arm only but despair at the lack of improvement in 5 months- my leg is clumsy and wooden; I try running but fail badly; my left arm is uncoordinated and useless. My fingers move - I'm lucky. I can pinch, grasp and release thin objects but now fear I am disabled for life. Physio doesn't seem to be helping - I asked for a Saeboflex but was told I am too advanced for it. Will Physio get me there in the end - plus a ton of determination from me? Is there hope? Should I just get on with being one-handed and give up on it? It sends shivers down my spine thinking of being disabled for life but I am bracing for it now. i get fed up of physios saying I'm one of the best recovered they've seen and that I'm full of potential; which all counts for nothing when you see no improvement yourself:crazy:

Any positive thoughts and experiences welcome - I'm running out of steam with trying to be positive.

Thank you,

Damian:razz:

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Stay positive and keep trying. You may not notice any improvement but others may.

I have a friend who after several years is still improving.

Unfortunately it is a long slow proccess, so patience is needed, to reach your full potential.

Never give up hope.

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Hi Damien, it sounds like you are really frustrated and a bit ticked off about how long it takes. It does take a lot of time, effort, determination, and perseverance. My brother

-in-law had a severe stroke a few years ago and has similar problems to yours but he also lost his ability to form words. Very frustrating for him. He can understand but can't communicate back quickly and clearly. It's my understanding that as long as he keeps working in it he will continue to improve and we all see a huge improvement from when he first came home to now. I don't know if you reach a plateau at some point or continue improving. If you do reach a plateau I think its too soon for you to have reached yours. Keep going and don't give up! Talk to your medical support team about this.

Sandi K.

Edited by Sandi K
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Thank you Ladies. It is hope I am running out of.It seems so hard to imagine that this useless, uncoordinated thing on my body will ever do anything useful again. You're exactly right at my frustration with my lack of progress. By just getting on with life as best I can with one hand, it feels like I've given up on my affected hand. i can be patient but fear so much that it's the end of my recovery. My family say to me they see improvements and there is evidence it's improving too - it gets faster in physio tests.

Yes, patience is key; So too is battling anxiety. Since the stroke i see only worst case scenarios, hence the title of this thread.

\thank you again,

Damian (Eurocracy)

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Hi Damian

As I read your post I could have sworn it was written by my husband Richard. His stroke was March 2010 and he has been affected exactly the same as you except that he cannot even move the fingers on his left hand. Since leaving rehab in January I feel he has made no progress. He has no motivation so prefers to stay in bed which means he isn't exercising his leg which means his walking is not improving. We do exercises with his arm but this is not getting any better. He only has feeling when you squeeze his hand and fingers very hard.

Richard is having a hard time accepting his 'disability'. He used to be a builder and we know there is no chance of him doing this again but it is hard trying to find hobbies for him - you may be able to give me suggestions of hobbies you have.

Unfortunately, I know you probably hear this from the professionals but there are no rules about disability and we just keep being told it takes time and even then things may not get better. I hate to think Rich will never get any better than he is now, especially as all he wants is to be able to walk unaided but hw won't do anything to help himself.

Sorry I haven't been much help but please feel free to message me.

Zoe.

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Hi Damien

Welcome to BTG.

I had a brain stem stroke during my coiling procedure which has left me with mild left sided weakness. I'm left handed and was quite concerned that I would have to learn to write with right hand! On leaving hospital I was unable to walk downstairs, I could do about 2 and then would fall because my brain got confused as to what leg to move next. I couldn't grasp at door handles, my left hand would be all over the door, no where near the handle. My arm would flap about with a mind of it's own! My whole left side has sorte of dropped, my trouser leg on the left side hangs lower than the other and my left arm hangs lower than my right.

I worked on a stroke ward in our local hospital at one point and I knew that you had to start rehab as soon as possible. I also know that you have to stay determined to get you through the tough days. If my arm had difficulty in doing something then I would keep trying day in day out until I saw the smallest improvement and then worked on improving that. I had to concentrate, look at my hand and will it to pick something up. I remember the one thing that almost had be beat was hanging out the washing, something I never had to think about! But it would take me an age, firstly getting a peg out of the basket but trying to hold the garment to the line (could take quite a few goes!) and then pegging the clothes to the line!!!! I drop things from my left hand and can take a couple of goes to pick it back up but back then it was a bit of a nightmare. But I can now hang it out with my hand getting to the line first time, even though I still drop the pegs and clothes!

I found physio really helped me understand where the messages from my brain were getting lost. It's hard to describe but I knew the message was leaving my brain but was not getting to my hand. Their encouragement helped me too. If you have been given exercises to do then I would urge you to keep doing them. They're not being flipant in the things they are saying to you, they see all sorts of problems daily and when they say you have potential you really have to believe them. The brain heals at it's own pace but it's still healing.

But I do understand that it can so be exhausting and understand that it may get you down at times. But all my hard work has paid off, I am now back at work. Although I find it much easier to type than write. I can no longer take minutes at meetings, my left hand is just not up to it anymore but that's ok, someone else does it! I can't walk for long distances as I get very severe back pains if I do, but again that's ok, I still get about. I also can't run, don't have co-ordination or strength but if I'm going to be late or miss the bus such is life! There are still so many things that I can do and I am so much more laid back about things now and I prefer it that way.

It's also ok to run out of steam at times, just stop and take a breath, tomorrow is another day! If you are having a tough day then just tell yourself your having a day off and start the hard work again tomorrow!

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Hi there welcome if I havent said it.....

The only way to gain movement or strengh is to keep going with excersise physico dont think of it as being 'disabled' its a new challenge I gained great determination in order to get to where I am today.....

I SO know that its not easy I SO know that it dosnt just happen in a few months.....

the black days are filled with more postive days and life gets better...

take care

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Hi there welcome if I havent said it.....

The only way to gain movement or strengh is to keep going with excersise physico dont think of it as being 'disabled' its a new challenge I gained great determination in order to get to where I am today.....

I SO know that its not easy I SO know that it dosnt just happen in a few months.....

the black days are filled with more postive days and life gets better...

take care

Thank you all so much. I so hope the physios can get me better. I'll do whatever it takes to improve. It just feels so hopeless to think I will never drink a drink without spilling it, nor never use cutlery again; just "normal stuff". I can move my hand and fingers but it is just so uncoordinated.

I'm coping well with one hand but do so want that affected hand to improve.

I'm just glad I've found the site, these are the toughest days of my life.

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Hey Damian

I can only imagine your frustration, but like the others have said - patience is key (and a virtue apparently;-)). Don't wait for your physio sessions to exercise your arms and practice - do all you can. It's like anything I suppose - practice makes perfect.

As hard as it may sound, stay strong and positive - anything is possible.

And don't forget - we're all here to support you every step of the way.

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I'm sorry to hear you're struggling. In complete fairness to you, you are coping with a lot of challenging circumstances and working them through is bound to be very scary.

When I feel that life is getting too much, I try to surround myself with like minded people.

BTG is great for online, but it is possible to find the same support in person too and in our communities.

I wonder whether you have a Headway group nearby? Google them to find out.

I have made a very good friend there who had a stroke nearly a year ago. He is unable to use his left arm at present, but is receiving physio. I am sure you would receive a lot of comfort in meeting people in a similar situation who you can share your experiences with.

Lxx

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Hey never say never, time, work and effort is what it takes....It is possible

glad you found this site too.

I can't thank you all enough. It is hope that I need most of all. My physio tells me to look at how far I have come so quickly - from paralysed to a half-useful arm in just 8 months. I just keep trying to do everything I can do with it - I'm guessing that will get me there in the end. I do see improvements - I did press-ups yesterday. When I tried that in hospital 6 months ago, I just ended up kissing the floor...

I am so glad I found this site. THANK YOU ALL!!

Damian (Eurocracy)

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There is improvements already as you say so that should give you the encorrougment I thought Im not getting better but when I was asked what was better I was surprised as I listed things that I could do....

take care

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Hi Damien,

I'm sure your struggles make it difficult to see the improvements you've made, even though others see it. I think you are doing well to come here and talk it out - that's what this site is all about. Just knowing there are others out there that can relate and help you get through this difficult time of your life.

Congrats on the press-ups! Major achievement :biggrin: I'm learning to appreciate even the littlest things that I complete and accomplish. It's hard and some days I feel hopeless, 'cuz I'm just not the same as I was before! But coming on BTG and reaching out for help, has been so enlightening for me. There are always people here ready and willing to help with their kind and encouraging words!

Hang in there buddy - you're doing it! Stay strong!!!

Hugs to you,

Carolyn

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Hello everyone, thank you again. it is just so hard thinking that all of my current deficits are permanent. It chills me to the core. I can't see most of them ever improving.

It's in my head now that people just never recover - it can't be true because my own mother stroked and her affected arm, after two years is a million miles ahead of mine. I just think it won't ever be me - which is probably just the stroke dragging me down

I worry that this is all just blind hope against hope. It's on my mind all of the time.

Damian

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Maybe you should see the GP about councelling......it may help you.

If you think like that then you wont you have to think postive I know its hard but if your head dosnt think it, then it wont go to your body....

When I fist got home from hospital I thought god is this it thankfully it wasnt they said I would be 80% disabled as well Im not always hope.....

But like I said if its dragging you down so ask about councelling......

take care

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Thank you Louise. I am a bit of a "drama queen" so I need it telling straight

Counselling? Yes, have been promised it but then nothing happens. I had a session with one community counsellor who just told me " you do know you won't recover don't you". That bucked me up no end!!

I'm doing well one-handed but must now battle to get my affectedhand and arm useful. As you say, a positive mind is needed to make it happen I think it's only human nature to brace yourself for the worst and try to be happy with that - I won't be but only time and effort will tell.

take care

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Oh drama thats me too, but the fact been there done all that.

Re; councelling if you've been promised you have to keep pushing them I found that out..

OMG! thats terrible what a thing to say, they def need re-training in people skills I noticed Lynne suggested Headway they are very good why not get intouch with them.....please dont let that one session put you off though.

Yes it is human nature but sometimes we can divert that....

take care

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Hi Damien

I can't beleive you were told that by a counsellor, that's shocking! Did you give feedback to their supervisor? No way should they be counselling someone who's been through such an event. I had counselling and it helped me tremendously but if I'd been told that by someone I would have felt crushed and it certainly would have affected my recovery.

Louise is spot on. You have to think positive and you will get positive results. I also remember coming home and thinking "is this it"? It took me 3 weeks to just be able to get the co-ordination/balance right to be able to stand up in shower and washing my long hair one handed was such a chore! That was me for the whole day, the rest of the time I slept. Our problem is also our best friend and that is time. It all takes time and each of us will have our own timelines in which we see our recovery moving on.

Edited by bogbrush
Personal Greetings removed. Please use The Green Room
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  • 1 month later...
Hey never say never, time, work and effort is what it takes....It is possible

glad you found this site too.

Thank you all, your messages are wonderful. I am willing to be patient, work hard and will never stop the effort - just knowing I can "get there" is what gives me hope, just as many of you have done. I so want to be the person that can say to people, hey you'll get there in the years ahead.

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