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My transformation from victim to survivor


dreinke

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It started quite slowly, I was waiting for my medical staff to give me some concrete information on rehabilitation and then I could follow that and recover. That never occurred, I don't think my doctors in 30+ years of practice had ever figured out anything about stroke rehab. Since my cognitive abilities were spared, as soon as I got access to a computer I found a number of stroke forums and everyone on them was looking for information that no-one had gotten from their doctors. It became painfully obvious that all stroke survivors are on their own, they need to figure out their own therapy protocols. Of the 5 stages of grief:

 

Denial, Anger, Bargaining, Depression and Acceptance :thumbsd:

 

I am still in denial that I won't recover, I refuse to accept that compensation is the best I can do. Anger still exists against the medical establishment that has not set forward a strategy for stroke rehabilitation for all survivors. Bargaining I never did. Depression was from the total lack of communication about what recovery looks like. My vision was that in 6 months I would be canoeing again. With no discussion from any medical staff that this was impossible, depression was inevitable. I haven't accepted my physical limitations because I know I will eventually get them back. I have enough drive ,persistence, pugnacity and smarts to move my brain functions around. In any event I set myself a goal to change stroke rehab worldwide, this is probably an insane belief. And the way to do that is to research and plan what needs to be done. Blogging is my starting point and from some of the responses it's doing a good job. :Tantrum:

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Dean: thank you. A painful revelation, I am sure. But also a productive one. Do you work on one aspect primarily, or do some sort of recovery therapy on all issues every day: physical, OT, emotional, cognitive.

 

I noticed this winter Bruce's recovery focussed mainly on cognitive. It makes sense that this is his primary goal. I could not imagine my Bruce without his brain. But that focus also involved not so much attention to his physical limits. He will work the arm and hand every day, but he can do that from the WC, watching TV. Not a lot of energy used there.

 

You have found your own strength in your comfort of knowing yourself and your strengths. I too have much confidence in my own self esteem; my Bruce, not so much. Different upbringings, different mind sets.

 

Depression, yes. In a Neuro who says to him, well you know progress from this point will be minimal. And regardless of my confidence in him, he believe it because the pro said so.

 

Thank you for your insights and advice. Helps to refocus and get an insight from the Survivor's viewpoint. Debbie

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Dean somewhere along the line you transformed yourself once again into mentor, your post on your blog have inspired me to a fundamental reorganization of my post stroke rehab, bringing with it some unexpected achievements , thank you

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Dean: thank you. A painful revelation, I am sure. But also a productive one. Do you work on one aspect primarily, or do some sort of recovery therapy on all issues every day: physical, OT, emotional, cognitive.

 

 

 

Thank you for your insights and advice. Helps to refocus and get an insight from the Survivor's viewpoint. Debbie

Debbie, I use the approach that anything you do during the day can be therapy. My blog posting is my cognitive therapy. If you check out my main blog I even talk about rehab in the shower and while sleeping. If this had occurred when I was 80 rather than 50 I may very well have given up by now. You're right, different experiences, different results.

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Dean:

 

I believe in starting to live my life to fullest & I try to do what I can do all by myself in kitchen & around the house& that is my therapy along with my treadmill & bicycle therapy. I will not sit at sideline in anger or depression because my left hand is still not working. I will not sit in the sideline & not enjoy my second chance to fullest. So I view my stroke is little inconvience in my life on how I achieve things which are still needed to be done. yes I walk slowly but I still reach my destination. & have to use my teeth & right hand great deal, but heck things get done around here.

 

Asha

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Dean, In this time of rehabbing which is not a specific block of time, continues daily for the rest of your life. Everything I do is therapy for me. Which before I was stroked I was a work alcoholic. Sitting at a computer day in day out, not ever taking a walk around the building on breaks or lunch time.

I find blogging to be therapeutic and it sounds like you do also. remembertolaugh, Jeanniebean :cocktail:

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Dean, In this time of rehabbing which is not a specific block of time, continues daily for the rest of your life. Everything I do is therapy for me. Which before I was stroked I was a work alcoholic. Sitting at a computer day in day out, not ever taking a walk around the building on breaks or lunch time.

I find blogging to be therapeutic and it sounds like you do also. remembertolaugh, Jeanniebean :cocktail:

 

Part of my therapy is to brew and drink my own beer :beer:

I have a life to live to the fullest.

Cognitively is my blogging and still proving to myself that I can think and come up with good ideas.

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Denial: like you, I'm in denial about not getting 100% back. Although I'm reworking definitions and making allowances for aging and other factors. I'm having a definitional argument with myself and plan on winning.

 

Anger: occasionally situational, but not in general.

 

Bargaining: I don't even understand that one.

 

Depression: possibly low grade interspersed by highs and always in the range of 'normal' for anyone, stroke or not.

 

Acceptance: I've accepted that this stroke has happened. How could I not, when it's the first thing that greets me every morning in the mere act and effort to get out of bed. But... acceptance of recovery, that is by definition, the recapturing' of something that you once had, is fixing on the idea that every day will be in the pursuit of regaining....and the dilemma for me, in this, how to regain taking things for granted. The recovery of ease within mind and body to pursue other thoughts. To not preface every want and endeavor with a checklist of deficits, both physical and cognitive.

And maybe I'm trying too hard, in the literal way, to figure this out. But that was me before as well.I keep trying to work it all out in black and white. Nail it down and hang it on the wall And really, this is all mutable gray and a thought exercise in uncertainty.So, I'm learning to live in the state of uncertainty; which surely is somewhere near Nevada and learning to speak the local dialect.

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