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As most of you know, I had my stroke in 2001 when I was 12 years old. I was only given 4 months of rehab therapy because I had to go back to the out of town hospital for 4 more surgeries. I just realized that I can't remember the exact times I had the rest of the surgeries.) Basically by the time I finished surgeries I had to start high school 2 years later. (Mind you I received no therapy during the 2 years I was having surgeries and once I started high school, I had no time for therapy because I got out of school too late.) So I ultimately only received 4 months of therapy altogether. I blame the other surgeries for the reason I made no more progress after my last day as an impatient in 2001. Last year when I started college, my schedule allowed me to start therapy again but it was kind of like a lost cause. :( Therapy or not, I feel like I am never going to get any better. My doctor took me off the botox which took away my therapy since neither were making a difference. I still have a wrist support and a splint which straighten my wrist and holds my fingers. I have exercises I can do but WHAT IS THE POINT? Im never going to get any better. Its been too long. My wrist bent the metal in the wrist support so it really does no good at keeping my wrist straight and I hate the splint. I am spposed to wear it 2 hours on, 2 hours off and its fine when its on but as soon as I take it off, my fingers curl right back up and my wrist drops AND im in more pain than before since my fingers were stretching for so long. I will be 19 in 2 weeks from today and each year I get sad thinking Im another year older and still cant do the things I always prayed for. I wish I could just have someone to exercise my hand 24/7 so it wouldnt hurt when I do exercise it and I wish there was a guarranty that the exercise will make a difference because I just feel like it is ointless to exercise so long after my stroke. Even the doctor think so or if not he would have never droped me from O/T!

Does anyone do exercise and if so, did you get any better and how long after your stroke was it?

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Sweetie, I am really sorry you are having such a difficult time. It does seem so unfair.

 

This may be a long shot, but do you know of a Shrine organization in your area? When you were 12, a Shrine Hospital would have taken you in and given you all kinds of help and it would cost you nothing. You may still qualify for their help. You would have to be sponsored by a Shriner, but that is usually not a problem. This organization helps anyone. My husband is a Shriner.

 

I also wear a splint at night. I don't like it very much, but it does seem to help. Of course, I was much older when I had my stroke.

 

I have a granddaughter who just finished her junior year at Anderson University in Anderson, SC. She is home with her mother this summer.

 

Vi

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No no no no no where would you be pumpkin if you believed because of your stroke you could not achieve academic excellence or be an honor student? As your many well deserved awards clearly prove you can do anything you put your mind to. You have many years of contracture to work against and stretching muscles is painful. As they return to normal size the pain will lessen and they will become easier to work with and strengthen.

Don't give up. You're an inspiration around here. You can do this too!

Maria :friends:

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Guest bessy

:yadayada: by all means dont give up you havecome such along long way heck highschool then on to college you should be so vry prouud of your self cin up possativeattitude iswhat ittakes CB i dont knowif you get dtroke smart magazine but in theretheyshow the saebo i haveheard itsa great device for your handin fact i think there may bea few others that h have thesaebo to use memy self i clasp my fingersteogther it works forme i then twiddle my fingers with myright hand :rolleyes: havent seen you in achat lately hope you makeyour way back to chat real real soon.remembertherewill bebettertimes a headcause yourstill a young.

chick a dee and beautiful as well .catch you soonontheflip sidein :chat: .soon i hope youtake carea dontlookatthewhatifs lookatthewhat will bes from thismoment on just take 1 day at atime and enjoy LIFE

 

 

BESSY :big_grin:

 

 

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Hi CagedBird....

 

I'm new to the stroke survival thing....I'm just starting my 6th month,,,

 

And I'm an older fart, 58.......<G>....

 

I can only stand kinda in awe.....You've gone through what a lotta folks will agree, is one of the tougher parts of life....i.e. High School etc....And into college. too! With this hanging on you...

 

I *know* I would have been the basket case, doing what you've done.....

 

It sounds like you got a little run over by the "system"....Think that happens because the folks running/applying the "system" ain't "here".....

That is, they ain't walked the mile in yer shoes, so, despite relevant experience, they can't understand....

 

You've had the guts to get where ya are now....

 

So you have that working for you....

 

I don't have any advice to give you....I'm too new to this myself...

 

Do Think you're amazing as it is......<G>......!

 

 

 

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katrina, i am sorry you are feeling this way. look what you accomplished in college and you didn't think you could do it, BUT YOU DID and came away with honors. YOU CAN NEVER GIVE UP HOPE after a stroke. the more you try and do exercises that is what causes the brain to develop new pathways for the neurons to travel and repair the damaged part of your brain. you body is still growing. if you just give up you won't get any better that way. recovery can and does happen years down the road but you have to work at it. it just doesn't come to you, just like your honors you had to work at those to get them. i know its summer vacation but recovery from a stroke is a lifelong event. i urge you to keep doing your exercises. maria is right in what she said about the muscles. it is your life and body ultimately, but you are not a quitter from what your aunties here have seen. i hope you reconsider and keep working on yourself to get better.

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katrina,

 

your 'aunties' are right. your scholastic accomplishments are because of your god given gifts, efforts, and dedication. you did not give up on your academics because of your stroke so don't give up on your recovery because of it either. it is because of those who suffered a stroke before me that i cannot give up. people like donna, maria, kimmie, and bessy have proven to me that we all have to keep trying no matter how slow the progress. they are an inspiration to me in the same way you are an inspiration to many here. keep fighting and don't give in to stroke!

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Katrina,

 

I have reread your post and all the answers and no one really answered your question about exercises for your wrist. Everyone is correct in that you should be very proud of yourself and your accomplishments, but that doesn't give you the information you were seeking.

 

How about asking an expert? You can do that by clicking on Member Area and scroll down.

 

I do have one suggestion if you can do it. Can you place your hand flat on a flat surface like a table and then lean into your arm, keeping your arm straight. This is called weight bearing, which you probably already know.

 

Keep smiling, and maybe the expert can help you.

 

Mema Vi

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Hi Katrina,

 

Another possibility would be to do a web search for any clinical trials in your area for stroke rehab that would involve the wrist. None of us can say how much you can gain back in your wrist. We do know that recovery never ends as long as you keep at it. The situation with a period of time post stroke is that the progress is very hard to see as the progress has slowed down after the first year.

 

One thing to remember dear girl, and I know you don't want to hear this bit of truth, you're doing so much better than you were at the time of the stroke. You've accomplished so so much - graduating high school, first year in college, your awards, social gatherings, internship, etc. With your young age, you have the future in your hands, mind, and heart.

 

Keep up your exercises, and conduct some research as to what might be out there you could take advantage of. With all treatments, there is no guarantee of what will be regained. God Bless you dear.

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i want to add some encouragement also, keep working on the wrist if you give up you are guaranteeing yourself there will be no imptovement but if you work with it you have the possibility that you will see improvement you may not get to the point that it will be like you never had a stroke but you certainly can improve the function some, i too have prob;ems with the wrist and hand on my affected side, and have worked it to the oint that i can now usually open my hand so i now longer have to pry my hand from every thing i hold onto and this has been a milestone for me and now more opportunities have opened up for exercises i can do so am hoping i will gewt some dexterity back however i have no feeling so i have to keep an eye on it when i do use it, i know you can improve also, there will be some pain and some times you will want to give up but hang in there and reap the benefits, you are well kived here and anytime you feel discourage ask all your aunties here we understand the discouragement when we are making no improvement for a time. :dribble: :hug: :2cents:

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Hi,

 

I exercise every day, use my Tony Little Gazzelle (10 min. twice aday), arm stretches fo ten minutes, use a three pound dumbell to do arm curls for about 5 min., bought some therapy putty to work the hand itself, do this each and every day...." if you don't use it you loose it" is my motto. The amount of time it takes each day is miniscule compared to the good it does.

 

The only one stopping you from doing any kind of benificial exercise is you. Check around and see if there are any clinical trials concerning Rehab. A friend( another survivor) got into one at the Rehab hospital put on by one of the local universities. He gets outpatient rehab three times a week for two hours each day, so it may be worth checking into.

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Guest lwisman

Katrina,

 

You might want to consider some form of exercise other than traditional therapy. Traditional therapy is great, but most of us have dropped by our insurance company. One great form of exercise for stroke survivors is water aerobics. Most Y's and park districts have classes which are aimed at those with arthritis. I found (and I know others have also found) that the exercises were great for stroke symptoms. Bodies under water can do a lot more than those on dry land.

 

Others have tried gyms, or just plain ole walking. Another option is Chinese exercise. Check out Chris DeWald's video that is featured in the June Newsletter.

 

I find as a survivor that it is very important for me to keep muscles moving.

 

 

 

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Hi Katrina ~

 

You & I have talked quite a bit the last few days. You helped me relate to my 15 yr. old daughter. Thank you!

I said everntually I got my dr. license. Drive w/ left foot gas pedal(sorry if i've already told you this)

I 'm limited driving in small town. Can't drive very well @ night though. You had an AVM like me & it effected the right side, do i remember right? You also asked if my visioin was effected. It was some, but still passed test.

 

I have to do stretches everyday before i put my leg brace on. or my leg just freezes up. (i use a belt to stretch hamstrings laying on stomach)I have stionaray bikealso i use for exersising , but that won't be a help to you. There's a lady in town that had Aavm bleed, her right arm can't move @ all, she wears a brace but has to get a new one every other year as hand moves position. Do you have anyone come help in your home that can help do your stretches. I was on medicaid for a time & the lady that helped clean house & sheets on bed ect. she helped w/ stretches. also i use pool to help. (i remember you said you didn't like water.) THere's a magazine called "foot smart" that i buy my shoes out of to fit a brace & there are different things in there to look at. Maybe some things for hands & arms. Do you have medicaid or some type of ssi ? Couldn''t get that as husband works. Hope this will help you.

 

Have a great day....Let's keep in touch..(not sure how to use the little yellow faces) But i would give you a bouquet

of flowers for your week. Hang in there...God Bless...

 

Your new friend ~ Nancy

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First, I have to say you are a very strong person having endured what you have.

Don't give up hope.

Exercise has helped me tremendously, but a lot of it is willpower I think.

I have trouble making it thru a trip to Ikea, yet I stood for three hours at a Cure concert.

 

I would say giving in and stopping exercise would only be an admittance that you won't get better.

No one can say whether you will or won't but it's worth a try. They said I would not walk without a cane and yet, I can jog for short distances, a year and 6 months later.

 

Please hang in there.

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Well,

you've certainly had a rough start to life.

Do I excersize?

You can bet your bottom dollar on that fact!!

EVERYDAY for nearly 4 years and it has helped me in more ways than I thought possible.

When I started excersising I had ZERO movement in my left arm/hand etc.

I am now able to do 25 push ups walk several miles without getting overly tired.

I can play some video games though I'm not as good as I once was just being able to play with my kids is a morale booster.

Look,

When I 1st checked in to the hospital my arms were "ripped" and I looked like I had been on steroids for years.

After just a few days my left arm looked like a toothpick before I was sent home both arms had lost ALL muscle definition that took me years to acheive.

I could do NOTHING but I discovered a little move ment in my left arm and figured if it could still move at all there was hope to build it back up.

I set a goal of 80% recovery I'm now at 95%

I'm here to telll you you CAN improve

but YOU have to make the decision

and then YOU have to hold yourself accountable for your own recovery.

We can give advice, offer support but the ultimate choice to do or not to do rests in YOUR hands.

You WILL get frustrated and you WILL feel like quiting at times.

Thing is you have to make yourself do it EVEN when you don't feel like it.

Attitude is 99% of the battle my friend.

I wish you the best for the future,

Outsider

 

 

 

 

 

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THANKS YOU ALL SO MUCH FOR YOUR HELP! Everyone put it in a bigger perspective. The more I exercise, the less tone , so then my fingers should straighten more. I have been lifting my arm everyday and wearing the splint until I remember to take it off. My goal is to get more wrist movement and open fingers. I know change doesnt come overnight but I can change my attitude. I realize that if I really want this, I have to get rid of the whatever attitude and do this for me since no one else will.

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katrina,

 

you got it! if you ever feel unsure of yourself, come back and read all these great uplifting responses! you can do it! :clap:

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NOW you're cookin' with grease!!!

I don't know if this will help you or not but

1 thing I did for my fingers wanting to curl up

is at night I'd take my good hand and flatten out my bad one

then lay my head on top of my flattened out fingers.

As long as I didn't yawn I was good.

If I did yawn I'd dang near rip a hole in the bed.

For muscles that are so weak

they sure can be strong when their doing something you DON'T want them to do :Ask:

And always it comes down to attitude remember that 1 small detail and you can't go wrong

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I feel your pain, I truly do. I encourage you though to never give up. It might seem pointless, but it's amazing what continual thankfulness can do. Thankfulness change the circumstances inwardly, then outwardly. I'm 39, but I'm determined to get better. I prayed for total healing when first had a stroke at 37. It's been two years. Many days I don't feel like doing anything, but the Holy Spirit strengthens me not to give up, in spite of. The physical therapist, speech therapist, and occupational therapist stopped everything because of lack of good insurance. My left hand is spastic. I had a wrist splint, but I don't use it anymore because I'm determined that one day God will heal me. When my attitude is bad or in a mode of anger,I repent. God is a healer and everyday He heals. You had your episode when you were 12. Now you are 19. Do you know what a blessing it is that you are still alive. Many people died in that time, deserving and undeserving. I believe that you will find the therapy that will dramatically improve your areas that need support. I truly believe that, :i_did_it!:

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  • 2 weeks later...

Caged Bird,

I don't have anything to add to the home exercises front. But you should start a journal of what you are doing, if it takes 100 flexes to get your fingers to lie flat, write that down and when it only takes 90 flexes 3 days later write it down again and celebrate. On some of my journal entries it was a big deal to get one more repitition.By doing this you will be able to see the progress you are making, nothing will be a big leap forward so we have to celebrate even the smallest gains.

Dean

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Thatta Girl WAY TO GO It is ok to get on the "pity pot" but dont forget to flush when you are done.

 

You have a great mind..... Why? Because you use it and exercise it. You were given a plate full of lemons at 12. but LOOK at what you have done.

 

Being physically disabled .... is not fun.. It sucks to watch other kids do things you can't. But look how mature you are. And you have learned so MANY valuable ans importnt lessons. they still need to learn.

 

And LOOK at the communication skills you have...

 

Not everyone GETS everything.. sometimes we have to look at the gifts and positives we have.. and realize others dont have the same positives.. maybe they are athletic.. but maybe they have less IQ .....

 

Don't sell yourself short. Y

 

My walking has improved each year.... your hand may never be 100% but your hand is NOT you.. only a small part of you. BUT Don't ever give up.... You never know which day may be the day your finger wiggles or ?????

 

hugs, auntie Bonnie

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