Friday, May 24, 2019

What I still can't do properly and never will with the current state of stroke rehab and research

I may be quite functionally able to do most everything I want to, that is not the goal. THE GOAL IS 100% RECOVERY. I don't want compensation, I want recovery. There should no stroke disability that doesn't have a protocol for it.  Decades and 10 million yearly stroke survivors  mean there is a vast market of information on what works and what doesn't. Whomever can't see and apply that needs to be drummed out of stroke.

  1. Car driving;  I can't use the turn signals with my left hand, I can't drink coffee while driving, I can't adjust heat, fan or radio while driving. I can't ever use my bright lights. I can't close the drivers side door with my left arm/hand. I can't change a tire using the scissors screw jack. I can't lift the car hood and place the support for holding it up.  I can no longer drive a manual transmission, this is almost required since almost all rental cars in Europe are manual. I can't use any of the window controls while driving.  I can't lift my arm in or out of the open car window, hopefully I'm never sideswiped while driving like that.
  2. Food: I can't open any jar larger than 2 inches in diameter. I can't unwrap muffin or cupcake papers. I can't spread peanut butter or jam. 
  3. Sex: I can't do missionary or Queen's throne style. Women have two breasts and two butts, I can't fondle them at the same time.Three separate women have snuggled up against my left side. My brain told my left arm to respond appropriately. It declined.  I only managed to date one. My recreational therapist just said sex was ok. He had NO consideration of any problems that might be preventing it.
  4. Biking: I can't do more than 1/2 mile on a two wheeler.
  5. Running: I can't do this.
  6. Bed: I can't make a bed using fitted sheets. 
  7. Washing: I can't wash my hands with any sort of cleanliness. I can't really dry my hands unless it is an air dryer.
  8.  Keys: I can't get keys on or off a key ring.
  9. Chainsaw: I can't use my more powerful gas chainsaw. The battery one runs out of energy in 5 minutes, dying battery, not able to rebuild or replace.
  10. Hospital gowns: I can't tie them in back.
  11. Zippers: I can usually get them done in 15-20 minutes, but never outside in the cold.
  12. Stuff sacks for camping: I can't get sleeping bag packed. I can't get the Thermarest rolled tightly.
  13. Tote bags: I can't fill these unless they are completely stiff.
  14. Dancing: I can't jump like a rock star as directed by the Blue Man Group, I can do the head bobbing.
  15. Camping: I can't fill stuff sacks or dry bags with gear. I require a 3 legged camp chair to sit in so I have a lap to put my plate on for eating. 
  16. Food: Steaks are out of the question, can't cut them. Sardine tins are impossible without spraying oil and mustard all over. Can't spread a peanut butter and jelly sandwich.
  17. Door opening: With a locked door I have to set down whatever I'm carrying to get it unlocked and open.
  18. Wine opening: Opening possible by wedging the bottle between my feet. I want to do it the standard way. 
  19. Writing: I can't use my left hand fingers to hold down paper as I write on it. Opening envelopes doesn't work. I can no longer fold paper. 
  20. Blood donation: Can't use my left arm, will not lay flat, can't squeeze the rubber ball. 
  21. Sleeping: Can't turn over without pulling the covers off.
  22. Sit to stand: In deep chairs and couches I have to pivot so my left butt cheek is on the edge of the seat, then I have to push myself upright with my right arm. Left arm can't do a damn thing. 
  23. Tying knots: No shoelace tying, that has caused a lot of toe problems, lost nails, blisters. No knot tying for fastening canoes to the car.
  24. No transporting canoes or sea kayaks: I can't even lift my left arm above my head with no weight.
     

2 comments:

  1. Dean,
    I am 6 years PS and your list pretty much describes me. I can do some of these items better, but your walking must be way better than me. I plan to really put in a lot of time walking this summer to improve that.

    I still have Medicare paid therapy once a month with 3 different neurological therapists to help me figure out what to spend my HEP time on. Very frustratingly slow, but steady measurable improvement keeps me going.

    I continue to check your blog posts daily, and I know you must feel like you are banging you head against the wall, but I appreciate it and hope you keep at it!

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  2. I suppose I should stop hitting my head against the stroke medical world but it is too much fun poking holes in everything they do wrong.

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