Seeing as we all have such different deficits from our AVMs, I thought I would start a discussion for those of us with hemiparesis (complete or partial), and tricks for daily living or recovery...
I tried cross country skiing and it was a bit of a nightmare (just more sad really because I love the sport).
I also tried riding my bike but my toe pointed and my foot just slid off the peddle. Plus I really lean toward my weak side.
Take care and even if you are still just figuring this all out yourself please join in:)
Hi Vera, nice to meet you! I too was an athalete and a skiier, however I preferreds deownhill and water skiing! Both of which I have temporarily (I hope) set aside in honor of my ongoing recovery! FROM WHAT I CAN GATHER, THERE ARE RELATIVELY FEW individuals like us with hemiparysis! Hope they all count their blessings!! I only know of myself and Phil who suffered paralysis! Maybe there should be a sub-group for folks like us!! ? I have been working through the paralysis for 2 years now and it SUCKS! By far my biggest complaihnt! Anyway, I keep p[ushing through! Nicole
Great to meet you Nicole! It certainly will be a long road for us then eh? Hopefully this discussion can bring us together in a type of Sub-group:) It's all about location and we're lucky to be alive but have some major recovering to do.
Hi Vera, I traded out old activities for new ones for the time being. I am barely able to walk on my own yet and have no fine skills in my right hand or arm. Anytime I an swim it helps a lot and allows a good range of motion. I recently got a used bowflex from craigs list and that is also helping, especially with my right arm and hand. The retraction forces my hand and arm to "go with the flow" and stretch in ways that it refuses to since the operation. I have to use a giant rubber band type thing to tie my hand to the bars or handles though. I do not have any good tips except that my range of movement has increased with the bowflex.
It sounds like we are in the same boat. A bowflex might well be a good idea for me too. So far I have success with a recumbent bike, a stairmaster and a treadmill and I may need to gain a bit more strength before I try much more.
Since my AVM bled in 1959 when I was 8, and it resulted in homonymous hemianopsia to the left, it must have been easier for me since I was a kid. I don't know. I was never allowed to ice skate again, but no one said a thing when I rode my bike. I still ride a bike. (I also tend to lean left, and it caused me to crash into the rail on a bridge.) I did not know that I should not have been in driver's ed class. I do not have a license now. I do not have double vision and I was told this was due to the craniotomy being done before my brain matured. My brain does not use my left eye most of the time. I can walk around all day with the left lens missing from my glasses, and not know it.
So, anyway, It must be easier (or maybe I just think it's ok?? - look up Anosognosia) for me to ride a bike. I also used to cross country ski a lot, never downhill, and I hiked a lot on the Appalachian Trail with my husband. I did not realize how severe the vision loss was. Strange.
I have never been told I have this Anosognosia, but I read about it and think, that's me. My AVM surgery was over 50 years ago when I was a kid. I think I have more stuff than anyone ever said as a result of exploratory brain surgery in 1959. But I made it. I find that amazing by itself.