20 year old - stroke - please help

[kilgoretrout]

Okay, so here's my story.

I'm a 20 year old guy from Poland (so sorry for eventual mistakes in grammar or vocab, though i'll try my best) and in March of 2010 i've had a stroke. I landed in a hospital for 3 weeks with left side almost completely paralyzed. After having about 1000 tests (bone narrow tests included) - there was even a suspicion i've got polycythemia vera, but at the very end - everything's fine with me except i don't have 1,5cm of brainstem anymore. I was running, too fast, i was smoking a pack of red marlboro's per day and i was an idiot who didn't cared about his health a lot. "Luckily" i stood up on my own legs about 5 days after the accident and my rehabilitation is quite fast actually...

...but not fast enough for me. Post-stroke rehabilitation program in my country doesn't include accidents like mine - and i'm treated like an 90-years old post-stroke patient who's only will is to be able to walk again.

Please don't get me wrong - i'm so happy that in this terrible thing i have support, but now, after almost a year - i've got something like half an hour of rehabilitation for 2 weeks. I know that compared to other patients, I'm in a great shape - i don't have problems with walking, from almost very beginning I'm independent (for evidence - i've managed a 3-week hitchhiking trip around europe, after 3 months after stroke), i even play guitar, like a 10-years old, but hey, thank God i'm alive.

It's really not enough for me. I was connecting my future with music - precisely playing guitar, as i said before.
Last friday i went to a private physiotherapist, i will be making a complete schedule of exercises with him.


My please is if you can give my any kind of advices - titles of books, exercises, about my diet, suplements, rehabilitation gadgets i NEED to have, MIGHT have, post-stroke rehabilitation miracles that's unkown outside US - ANYTHING YOU THINK COULD HELP ME, everything.

I was reading a lot about it, but i'm not capable to set this brain-damage-puzzle together.
Especially if you got something about finger rehabilitation - my main problem is with flexors.
But i'm worried also my feet (toes), ballance, everything.
I found by myself things like powerball, varigrip or the movie called "finger fitness", and i'm trying to play guitar as long as it's possible, i'm exercising everyday, but my

And i know there's a little, or no chance i'll be next accomplished guitarist - but if it's even 0,00001% chance - i'll do anything to make it.

Peace & love to everyone and thanks for your help!

PS. if there's any necessary things i didn't wrote about - please tell me.

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[oc1dean]

I would suggest going to stroke forums like strokeboard.net DailyStength, MedHelp Healthboards, ning.com has 3. There you can meet other survivors who can give you plenty of support.
Dean

[kilgoretrout]

thanks a lot, stupid, but i didn't thought about it at all :P

[gcoe]

Hi kilgoretrout

Thank you for your request for further info. It actually is a bit hard to answer because the scope is too wide. So I am going to suggest you think a bit more about what you would like to focus on and then perhaps you could ask some mpre specific questions here and elsewhere. Here are some general comments

You want to know more about diet and lifestyle changes to prevent another stroke. Great idea! However there are two issues to sort out you need to know what type of stroke it was and if possible why you had it. For example it is unlikely that it is due primarily to atherosclerosis (the main vessel disease that causes strokes in the older age group. So while stopping smoking is good for you stopping may have very little to do with preventing a future stroke. Did you have an ischaemic stroke or a bleed? If you had an ischaemic stroke ( very rare in your age group) has yiur heart been fully checked out for arrythmias? Have you been tested for diabetes? And what about metabolic syndrome? Each of these conditioms can be managed and diet and exercise may be very important - but they also need to be medically managed. Or did you have a bleed (more common in your Ge group). In which case i presume you had an angiogram of the brain. It is very important to have the architecture of the vessels checked as there are often multiple deformities of the blood vessels (anneurisms or arterio-venous malformations) if one burst and caused the stroke there could be others. And what is your cholesterol and blood pressure like. All these risk factors can ve managrd. But first call is the doctors not us

Second thing when thinking about prevention is there is mostly misinformation out there and on the web.so getting sources of really trusted information is very important and you should develop some critical thinking around information. Here are a few examples:

Increasing physical activity so doing more than 30 mintes of aerobic activity a day is good for lowering blood pressure, lowering blood sugar and reducing fatigue (if yiu are prone to this since the stroke). Getting and maintaining fitness is one of the most important things youcan do fornyour health. however after a stroke a fitness programme should be under the medical supervision, particularly if you are prone to hypertension. You may also needsome help with adapting your exercise as you have some residual weakness.

Vitamans, minerals and other supplements sold as pills have been shown on the whole to be useless and in some cases to cause harm. There may be the odd exception to this but don't get sucked in by advocates for these potions. Better to follo well researched advice on whT and how to eat better. A visit to a dietician may be a good idea btw registerd dietician not a nutritionist - nutritiomist can be anyone off the street.

If you want to carry on being a musician setting yourself goals for improving your motor control of an instrument is good. However if you come to a brick wall and can't improve further it is not weak to consider getting an adapted instrument or changing the instrument all together. Quite the opposite - it can be a whole lot smarter. Remember the key organ that makes music is not the arm or hand - it is the brain and the brain has a hundred different ways if achieving its goals. Artists who have no arms draw beautifully with their feet, those without hands can use their elbows etc etc. It is all about bulding skill to realise your dreams. OccupTional therapists or. Phusio with some disability wrgonomics or findin info fro disabled musicians can all be good sources of info

Are you wantong to get advice about exercise for residual weaknwss? It is much better to go and see a physio who specialises in neurological disease then get advice off the net. But if you want some giidance then think abiut some specific questions

Deans suggestion of support groups is an excellent idea.