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This week.....ehh


socialwork555

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Well I can't write this blog without being honest and admitting that after breakfast and getting what I had to do, mostly in the morning, that I stayed in bed curled under the covers for three separate days. I had an apt with my neurologist, who barely knows me by the way, and he bluntly told me that if I had not opened my hand by now, I will not have functional movement in the hand again. Then the next day, I told my OT about it and she said that she doesn't entirely agree with that. She said I have had slow but steady progress throughout, and although I'm approaching the six month mark (5 mo), that isn't an absolute time frame.

 

I was shocked when my arm moved two months ago, and I'm happy about my arm. But boy they aren't kidding when they call your affected side your weak side----it's so weak, but it can fight gravity. I don't have any grand illusions, and I'm not in denial. I have figured out after the first three months that I wasn't going to be the same. Of course, I was hoping for some functional movement in my hand, but as my OT said, don't rule it out. It's a catch 22; I want to know the outcome so I can grieve that loss, and reach acceptance, so that I'm not fighting reality. I don't want to wait for that day that's never coming. But I don't want negative news delivered so harshly, without more explanation.

 

I wonder if I am the only one who spends the day in the safety of my bedroom, crying for what I once had, and how it was taken away so quickly. Maybe others like to zone out to tv, but not me. I'd rather be in silence.

 

My dad, who moved half-way across the country, hasn't had a clue what to do since this happened. He says the wrong things, does the wrong things. So I told him that what he could do was buy me a kindle, since I only have one hand to read. Well the box comes in the mail; of course I cannot open it, and my mom can barely open it, and she has two hands. What we find inside is an ipad. He said I can download the kindle application for it. I now have to figure out where an apple store is so that they will start it up for me. I know this sounds bratty----but can't he just get me what I wanted. He always gets you what he wants---and it is more expensive!

 

The good news is that my appetite is back. The other news is that I'm going to start looking around for part-time work. I miss being a social worker, and I really have too much time. Improvements are so slow, I would just feel better about myself if I were working. Of course I will be nervous. Going into the workforce with a disability is scary for me. But I am lucky that none of my brain that controls thinking, or speech, or sight was impaired.

 

Also I went on disabledating.com and met a fellow stroke survivor about a month ago in Virginia. He is three years post-stroke, and he makes me feel lucky because he lost his hand, but he used to play piano and organ, and teach children. It severely affects his work. We've spent time together three times, and he's very honest and kind. He's also from Russia, so he has lots of stories, and we are both divorced, so we have that in common. I figure this must have happened for a reason, because I've finally found a good friend nearby, and stroke survivor, and he is supportive and understanding. I'm ever so grateful for that.

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Christine, people on here will tell you there is no time at which progress stops. Yes up to six months is the quicker progress but after that you still find things you can do that you couldn't do before.

 

You have to keep up the exercises, find new exercises, attempt new ways of doing things etc.

 

As for the "new normal" in some cases it is new every day. At the moment Ray is once more going through a tough time. At the end of May he had stroke number six with some losses in physical and mental capacity. He has just recovered from a chest infection and now has aspirational pneumonia. But because his stroke he must once again work on walking, talking, exercising his left arm etc. There is not a point at which you can say "I have finished", recovery is ongoing for as long as you work at it.

 

Sue.

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Christine, I can't believe a doctor gave you that diagnosis at such an early stage of your stroke recovery. He should have said it takes time, and you might get some movement back but not 100%. I'm glad you have an OT who is more positive. Also, there is a nuerologist on this board who has suffered a stroke which affected her arm and hand movement. I have not seen her on this board lately, but maybe someone can come up with her name. She will tell you to keep trying with your therapy and don't give up. There are other survivors who have recovered many years, and they also say "never give up". My spouse had his stroke 2/10 and has limited arm and no hand movement in left hand. No doctor has told him he would not recover from this deficit. I'm happy you are considering going back to work as this will help in your recovery also.

Best regards,

 

Julie

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Christine:

 

it does not matter what doctor say or others say about your left hand. whether you get your hand back or not you are still you & your worth as a human being does not depend whether you can use your left hand or not. I did the same mistake & spent valuble time crying & feel depressed. as long as you accomplish all needs to be done with 2 hands with 1 hand, life can be still good. yes you achieve things differently but who to say being different is bad thing. I guess thats part of acceptance journey, but sooner you accept your present the way it is better it will be for your own state of mind. I wasted first 2 years crying about my left hand but after realizing how it affected my loved ones, changed my attitude completely. now I know happiness is a choice. I am glad you are considering going back to your social work. I strongly believe out of adversity something good always comes out & your new friend sounds like that.BTW first few years are hardest when you are so used to doing things 2 handedly & you have to use 1 hand, its quite frustrating & annoying. I know I have cursed those boxes many times, but as time goes on, it will become easier & you will stop missing your hand. Just want t assure you there is still great life post stroke, & you have to give that chance to you. you are worth it & deserve that chance.

 

Asha

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Christine: it is not a matter of accepting an outcome because life is dynamic. If you choose to accept defeat, that is another matter. Sure is easier than fighting, but again it is your choice. If someone told you you would never eat cake again, would you just give up, look and envy others eating cake and lament your outcome?

 

Once you get that Ipad up and running, you will thank your father. Does so much and thinking of re-entering the workforce, you will be glad he made that decision.

 

Being a social worker, I am sure you have considered an anti-depressant. You know professionally that spending three days under the bed covers is not healthy. You need to take a page out of your own professional handbook and find a way to start moving forward. Goal setting this early on in Stroke is difficult because your brain is not completely over its swelling and new pathways will develop now at the six month mark that will show yu new recovery if you continue to work at it. Just some thoughts. Debbie

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Christine - You are lucky to get the iPad, it has so many applications on it, you can also get all kinds of newspapers and periodicals free of charge through the app store. You should be elated. I am trying to save up enough money to get my husband who has aphasia the iPad because of the amazing speech programs that are available on there. We wish we were as lucky as you.

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Congratulations on your progress so far, Sam is a rightie who suffers from left side deficit. He was trying to build me an arbor this spring - about 45-60 days post stroke. He couldn't grasp a nail to hammer it in the wood, because it was so small. He found another way - hold the nail with a pair of pliers and it worked! So get out of bed - take a pill - and find out how to do everyday things with one hand! Clap-Hands.gif I am lucky - Sam bought me a kindle for my b'day and I love it. Once you get the app downloaded, you will have a ball. PS - Sam doesn't even unplug my computer if its stormy. LOL

 

Anyway - hang in there, keep looking for a new way, a new day and a new you will come out.

 

Kathy

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Your neurologist is just using the standard reply of spontaneous recovery in 6-12 months. He is definitely not up-to-date on stroke research. Recovery continues as long as you work at it. They do not follow patients long enough to know what recovery can occur.

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