On one of my stroke support groups there was recently this chart posted:
I replied with, "3.5 here - I do walk with a cane for stability any time I leave the house, but I technically CAN walk (bounce off my own walls anyway) around my house without any help now. I can attend to pretty much all bodily needs on my own now though. Started at a 5.99, was a 5 for a few months, and was still a 4 or 4+ until a year or year and a half out!"
I don't do family finances. I still sit, or very occasionally stand with grab bars, to shower. I cut 6 inches off my hair last month as it was to the point of not being able to care for it myself at all. I don't have a driver's license. But I CAN now plan and execute basic meals most nights, organize family schedules and health care needs, get myself safely in and out of the shower on my own, work on writing and VERY SLOWLY preparing a book manuscript for publication, stand safely at a hot stove to cook, execute fairly responsible sharp knife skills, carry a cup of water across the room without usually spilling (too much anyway), sort, wash and and wad (true folding is still rather hopeless) laundry, sing with about 80% accuracy of range, as long as I keep the tone and volume low, care for myself and children for extended time periods and without supervision, and so much more. As Kendra and I sometimes remind ourselves, "Not bad for a dead person!"
There was talk on the group about how this chart only seemed to address physical function. To several friends who are predominantly dealing with mental and/or emotional deficits, I wrote,"the cognitive and emotional battle is EVERY BIT as challenging as the physical one! If you had to give yourself a cognitive number from 0-6, where are you today? Where have you come from? How long has it been? I just said last week (using different scale than this) that I feel I am back to nearly 80% physically and about 70% emotionally/mentally now."
|Out on the town, with friends, last September. I'm in the hat and holding the cane. |
A rare unsupervised outing, though I still had to ask for a ride.
1. Before strokes, I used to fairly exclusively use the big stalls if I didn't immediately see anyone in need, due to truly severe claustrophobia. No I didn't "need" them physically, but I felt truly panicky in the smaller ones, like I couldn't breathe!
2. There are LOTS of people living with chronic pain and/or other disabilities that aren't readily visable. Just because they aren't in a chair doesn't mean they were not in need of that stall too. Looks can be deceiving. Unless I know the details of their story, I can't presume!
3. Sometimes people just don't think - it is not out of intent to hurt another, it just didn't occur to
them. I've gotten to the point that if someone offers me an open stall because they see I'm waiting, in a normal volume of voice I just say sweetly, "No thank you. You go right ahead. I'm waiting for the big stall because I need the hand rails." This let's the person in the big stall know I'm waiting (except for the other day when I waited a LONG time and the user nearly smashed me with the door as she flug it open to come out - had her earbuds it while using that stall as a changing room) without being rude, and gives some education, something to think about, for all that might be in the room at that point (especially if I have to turn down empty stalls several times before I get to go in).
And 4. I eventually might ditch my cane but still need the stability of those rails someday and then I would suddenly become the seemingly fine looking person who was taking up someone else's potty spot. With a cane, it sure would be nice if the smaller stalls that can't fit a chair still had rails so I wasn't taking the wide spot, but as most don't, that's what I still need to use." At this point, I would gladly take small stall claustrophobia if it mean I wasn't taking the big stall away from someone who might need it more than I did. After enough MRIs, those regular sized stall look absolutely mammoth now.
This in no way negates the fact that if someone is in a wheel chair they have absolutely NO OTHER OPTION than the handicapped stall, so I would ask that if just choose the big stall for no particular reason, please think about your other options. It is just my perspective from both the NEED and the pre-stroke side that helps me try to understand the choices of others. Also, a mom with little kids usually needs the big stall too, in order to change a dipper, fit a stroller and/or keep her toddlers in sight! As I've gained fairly regular bladder control, waiting is much less of an issue now than it was a year or two ago, but I still wish bathroom designers took the time to design their bathroom with infant changing tables NOT taking up the one and only wheel chair accessible stall in a public restroom! Another tip for public restroom designers, put handrails in more stall while you are moving the baby changing station out of the handicapped stall, please.
|December, 2011, not quite 2 months post stroke|
|Picture, Sept. 2014, about a month shy of 3 years.|
Handwriting, February, 2015, 3 years, 3 1/2 months after first strokes.
Taken "mirror image" with my webcam. so my left (more stroked side) is actually on your left in this picture.
As you can tell, my face was never terribly stroked-looking (my eye sure was!) but, while it is a day-to-day thing (the January picture was a particularly good day) there does to gain facial improvement as well as all the rest. It is still a week before my 40 month mark, but as this post is primarily a progress report, I am going to call it my 3 year, 4 month update.