Such good information Ed. Thank you so much. I was diagnosed several years ago but don’t even know what type I have since I live in NW Montana with no real specialists here that know a lot about it. Hope you are doing as well as possible.
I can relate to what Ed is speaking about his ataxia issues. I myself I'm trying to learn as much about sca6 and the problems I deal with everyday. My mother had ataxia and past away in 2015. I was taking care of her, and had minimal issues at that time. I was still working and in late 2017 I went thru testing to get confirmation for my diag. I continued to work with great difficulty until I retired, in October 2019. My brother and sister both have minimal symtoms. I was using a cane, but now a walker and I'm exercising everyday just to keep moving to avoid going to a scooter. I thank you again for sharing the interview with Toni and Ed.
SCA3- but similar story. I was caretaking mother. but got diagnosed Jan.2019. She passed Nov. 2019. I retired in June 2019. I walk with walking sticks still. my brother has few symptoms but older sister is in wheelchair and has great difficulty. Wishing you all the best.
LMAO I bout spit my drink out when he said his wife asked " Where is your walker ? " and Ed says " I don't know ! " lmao omg me and my son go through that 10 times a day ( I'm the one with SCA 1 )
The doctors diagnosed me with Ataxia when I was in high school. And now I am 60 years old. I had to go to Kane about 2 years ago and now I'm on my Walker I really don't want to use it but I know I have to for safety reasons
I have Ataxia for about 8 years, one night I wake up at 3 in the morning with static noise in my left ear...after that I lost my left ear hearing...after that I developed Ataxia, I fall down 3 times an I don't realize I have that problem. After I see an ENT. He say I have Ataxia...that change my life for ever, no longer working and living by myself is very scary. No family o nothing to look over me...only God.
Such good information Ed. Thank you so much. I was diagnosed several years ago but don’t even know what type I have since I live in NW Montana with no real specialists here that know a lot about it. Hope you are doing as well as possible.
I can sure relate to a lot of these things. It is so frustrating and it sure makes life so difficult.
A lot of great information on ataxia, thank for going over the the ataxia web site. Thank you
I can relate to what Ed is speaking about his ataxia issues. I myself I'm trying to learn as much about sca6 and the problems I deal with everyday. My mother had ataxia and past away in 2015. I was taking care of her, and had minimal issues at that time. I was still working and in late 2017 I went thru testing to get confirmation for my diag. I continued to work with great difficulty until I retired, in October 2019. My brother and sister both have minimal symtoms. I was using a cane, but now a walker and I'm exercising everyday just to keep moving to avoid going to a scooter. I thank you again for sharing the interview with Toni and Ed.
SCA3- but similar story. I was caretaking mother. but got diagnosed Jan.2019. She passed Nov. 2019. I retired in June 2019. I walk with walking sticks still. my brother has few symptoms but older sister is in wheelchair and has great difficulty. Wishing you all the best.
LMAO I bout spit my drink out when he said his wife asked " Where is your walker ? " and Ed says " I don't know ! " lmao omg me and my son go through that 10 times a day ( I'm the one with SCA 1 )
The doctors diagnosed me with Ataxia when I was in high school. And now I am 60 years old. I had to go to Kane about 2 years ago and now I'm on my Walker I really don't want to use it but I know I have to for safety reasons
I have Ataxia for about 8 years, one night I wake up at 3 in the morning with static noise in my left ear...after that I lost my left ear hearing...after that I developed Ataxia, I fall down 3 times an I don't realize I have that problem. After I see an ENT. He say I have Ataxia...that change my life for ever, no longer working and living by myself is very scary. No family o nothing to look over me...only God.
Is a balance vest helpful
Yes, I have one. About 5 years now.
I haven't had the chance to use the bal. vest yet. Just order last week, will let you know. I will cont. to do my workouts use my walker.