I am sure one of you have experienced this. I just need to know what to do. When I am walking and I am in a small area with a lot of obstacles my legs will stop moving forward or backward. The leg that is in the air begins it's shaking routine. It lasts from seconds to a minute. So, far I have been able to overcome it by thinking it through but, it is taking longer each time.
Thanks
Randy
Hi Ran, I have SCA6 and mine does too if I'm in a confined area. They are called involuntary tremors which is opposite of Parkinsons and I hate when that happens As long as I am holding onto the walker with both hands I am stationary. But thruout the house I walk without any assistance. I just bounce off the wall every now and then. The tremors usually start as I'm approaching a moving target without any assistance as I'm moving.
My legs freeze,but my mind doesn't,it is a bad feeling.You can only take your time & try to think in through,like you said.
My freezing seemed to be related to visual planning so I contacted Braille and they came and trained me to use a blind cane(roller ball) for walking. My eyes aren't blind but my brain is! My eyes can see "what" but my brain cannot configure "where" and especially not "how". I know we have a lot of retinal connections in the cerebellum so may be this is why the blind cane works so well, also since vestibular problems create a set of visual problems all on their own the roller ball cane maintains ground contact and that most certainly helps with balance and not getting nystagmus so frequently.
In any case I have found "feeling my way" and using my sense of touch in addition(sometimes in place of) my wonky vision, that I can get about with much much much less freezing and much much much less spasticity. Navigation is so much more than a pair of eyeballs, it's proprioception and vestibular and how all three work together. Using a rollerball cane gives me the freedom to navigate downtown on my own and also because I don't have to work so physically hard to maintain fixation, it doesn't just alleviate a lot of leg pain for me but eyeball pain as well!!! My first cane was a standard white with red tip because Braille thought it important that when I walked other people might be alerted that I may walk into them. ;-) But I felt uncomfortable especially when people would see me get into my car and drive away! (o) (o) So my next roller ball cane I chose black with a white ball. Love it! and can't live without it! Braille is doing more and more with issues of " brain vision loss" and they are such a fantastic resource!!! Audio books, classes in just about everything and also a great place to volunteer.
I have SCA 1, and luckily don't have the leg freezes, but I am like you James, I have to have my rollator when I walk any distance, but around the house, I don't have to have it, just almost fall a lot, but there is always something to break my fall, thank goodness.
Same with me, James.
James E. Harnest said:
Hi Ran, I have SCA6 and mine does too if I'm in a confined area. They are called involuntary tremors which is opposite of Parkinsons and I hate when that happens As long as I am holding onto the walker with both hands I am stationary. But thruout the house I walk without any assistance. I just bounce off the wall every now and then. The tremors usually start as I'm approaching a moving target without any assistance as I'm moving.