Thank you for sharing these videos. I Have had Ataxia for 37 years and Ed is 100% correct, protecting yourself (from falls) is IMPORTANT. Even though it is very uncomfortable, I am leearning to speak up for myself. Thank you. ☺
i have a friend who has sensory ataxia and i want to learn more about it so i can somewhat relate more to what he is going through and somehow be able to help him feel better and do better... i hope more will be educated about this
My ataxia was from a birth defect. I got diagnosed with cerebellar hypoplasia at age 50 when I had problems walking. It would be nice if there was someone with this problem who could talk about their challenges.
Mine is from birth defect also.... cerebellum bleed from AVM.....i have fallen all my life......brain bled, 24 yrs ago..at 49yrs old...now 73.....been tough!!
Maybe you have acquired cerebella ataxia due to celiac disease. I have acquired due to overlooked B1 deficiency (Wernicke encephalopathy) and overlooked hepatic encephalopathy. B1 infusions help me very much
I would like to hear more about the types, specifically (the one that runs in my family) Machado Joseph Disease I believe it is SCA3, from the research I have done.
Go on FB, we have a TON of groups for general Ataxia, and also a TON more for specific types. Travel, support, religious, fitness, you name it we have it on there !! Don't be afraid to ask ANY question even if you think it's dumb, or that we might have answered it 100 times. YOU need the answer and WE are more than happy to help and support you
Unfortunately these kinds of labels are pretty worthless as one Doctor will say one thing while another Doctor will say it is another. There is no real consensus even among many of the Ataxia Groups. It ultimately also won't change whatever treatment plan your doctor comes up with. If you don't like the way this doctor is treating it, just switch doctors and the new one will almost assuredly not use the same treatment plan!
Very informative video. I am 81 yrs of . Just today in evening as I was bending down I was feeling of being dragged down to floor. This hashapppened after 65 yrs. I qas hit with iron bar when I was 16 yrs of age. I don't know what to make of of it.