Are there any connections in South Africa? It's more or less 2 years since my MRI scan revealing a shrinking cerebellum; I can't find some one like me here ; it's been hard ; I continue to have symptoms - thank you for the video 😊
So proud of each of you. Of Dr. Snider and each of the many patients in Nebraska that are FIGHTING BACK! Standing to ataxia together. May God bless you all every day. Your strength makes me a better doctor, and makes us all better people. We are with you!
Thanks for featuring MotionTherapeutics BalanceWear Vest. That is really a great story with Linda. For more information about BalanceWear Vest please visit www.motiontherapeutics.com #BalanceWear #Vest#MTI#MS#MSBalance#Ataxia #Parkinsons#HuntingtonsDisease
@@lindasnider5678 Hi Linda. I'm in New Zealand. Can I order a vest online? Do you know of anyone who has tried stem cell treatment? My partner is in a wheelchair now. Cheers
@@mistmaiden38 The vests are custom made and fitted by a physical therapist specially trained and certified in the vests. It's fairly complicated. I'm sorry. Also, I know many people who have done stem cells. They have spent 10 - 20, 000 dollars and it hasn't helped one person I know of. I think it shows promise but not now. If it was effective they would offer it here and we wouldn't need to go to China.
My Dad is 74 he has had Ataxia since 2013 at least from silent strokes In the cerebellum that he never knew he had he thought it was his hips since he had 2 hip replacements but his neurologist said it was the silent mini or micro strokes he had he has fallen twice he gets depressed and I worry about him a lot too I hope he can get a vest because the doctor said therapy wouldn't help him much I don't believe the Dr.
Hi Linda, I hope that you read my post. And I hope by now you’ve been on a gluten free diet. Your correct diagnosis is gluten intolerance. And probably most of those other people will regain their balance too. I noticed improvement after 6 months and it continues after 5 years. Gluten causes permanent progressive damage to your cellebellum. Do research and help those other people!! Lori RPh.
I have been gluten free for years (except for cake at weddings every now and then) and lots of others in the group are too. It is helpful but with a genetic autosomal dominant form or ataxia it's not a cure. There is gluten ataxia but mine is different. My specific genetic problem is too many CAG repeats on chromosome 6 which produces a protein that is laid down on the cerebellum and brainstem.
cying :'( what can i do linda? my father and my only sister 33 years old has been ataxia :'( as i m bangladeshi, we have no proper therapy or resources to get relief from this? give me suggestion please :'(
Salma, currently there are no treatments or medications that will help with ataxia. The best remedy at the moment is exercise, healthy diet, and mental support.
Just found this web site. I have cerebellar ataxia. Diagnosed recently meanwhile my husband died April 7th of Alzheimer’s, so it’s been hard. I am “old” at 83. But it is getting worse.
Love, love, love!! Mine is genetic, my brother has it too - I developed symptoms around age 38 & I hope & pray that my kids don't develop symptoms at all. Yoga is a must! I gave up gluten & have been eating keto/low-carb for 2 years - that really helps. I will look into getting a vest. You are such a positive inspiration!
Most people can't afford it. I'm a doctor and picked a job I could do in a wheelchair. Plus my husband works so we're dual income, no kids which helps. Nebraska Ataxia has a grant program to help but you have to live in the area. I planned for this to happen.
I agree Linda, Everybody should have a Skippy.
Are there any connections in South Africa? It's more or less 2 years since my MRI scan revealing a shrinking cerebellum; I can't find some one like me here ; it's been hard ; I continue to have symptoms - thank you for the video 😊
There is a Facebook Group for South Africa...
facebook.com/p/Ataxia-South-Africa-ataxiafriendsa-100064566674741/
So proud of each of you. Of Dr. Snider and each of the many patients in Nebraska that are FIGHTING BACK! Standing to ataxia together. May God bless you all every day. Your strength makes me a better doctor, and makes us all better people. We are with you!
Thanks for featuring MotionTherapeutics BalanceWear Vest.
That is really a great story with Linda.
For more information about BalanceWear Vest please visit www.motiontherapeutics.com
#BalanceWear #Vest#MTI#MS#MSBalance#Ataxia #Parkinsons#HuntingtonsDisease
thanks for video! makes cry seeing people and hearing stories with same conditions as me.where can i find a vest?
The vests are available through Motion Therapeutics BalanceWear
@@lindasnider5678 Hi Linda. I'm in New Zealand. Can I order a vest online? Do you know of anyone who has tried stem cell treatment? My partner is in a wheelchair now. Cheers
@@mistmaiden38 The vests are custom made and fitted by a physical therapist specially trained and certified in the vests. It's fairly complicated. I'm sorry. Also, I know many people who have done stem cells. They have spent 10 - 20, 000 dollars and it hasn't helped one person I know of. I think it shows promise but not now. If it was effective they would offer it here and we wouldn't need to go to China.
My Dad is 74 he has had Ataxia since 2013 at least from silent strokes In the cerebellum that he never knew he had he thought it was his hips since he had 2 hip replacements but his neurologist said it was the silent mini or micro strokes he had he has fallen twice he gets depressed and I worry about him a lot too I hope he can get a vest because the doctor said therapy wouldn't help him much I don't believe the Dr.
God bless you. I had cervical problems then numbness and tingling. I look like I’m drunk and I don’t drink.
Do you have ataxia? What is your vitamin D level?
Hi Linda, I hope that you read my post. And I hope by now you’ve been on a gluten free diet. Your correct diagnosis is gluten intolerance. And probably most of those other people will regain their balance too. I noticed improvement after 6 months and it continues after 5 years. Gluten causes permanent progressive damage to your cellebellum. Do research and help those other people!! Lori RPh.
I have been gluten free for years (except for cake at weddings every now and then) and lots of others in the group are too. It is helpful but with a genetic autosomal dominant form or ataxia it's not a cure. There is gluten ataxia but mine is different. My specific genetic problem is too many CAG repeats on chromosome 6 which produces a protein that is laid down on the cerebellum and brainstem.
cying :'( what can i do linda? my father and my only sister 33 years old has been ataxia :'( as i m bangladeshi, we have no proper therapy or resources to get relief from this? give me suggestion please :'(
Salma, currently there are no treatments or medications that will help with ataxia. The best remedy at the moment is exercise, healthy diet, and mental support.
Just found this web site. I have cerebellar ataxia. Diagnosed recently meanwhile my husband died April 7th of Alzheimer’s, so it’s been hard. I am “old” at 83. But it is getting worse.
@@natasharoesch4470 Use cbd oil and thc along with keto diet and proper exercise. You will find relief and feel lot better.
Only easy day was yesterday as we would say in another life. Team Never Quit! Ty for sharing Doc
Love, love, love!! Mine is genetic, my brother has it too - I developed symptoms around age 38 & I hope & pray that my kids don't develop symptoms at all. Yoga is a must! I gave up gluten & have been eating keto/low-carb for 2 years - that really helps. I will look into getting a vest. You are such a positive inspiration!
Try medical marijuana and eat keto diet along with exercise. it will work.
Who can afford all that....I have Ataxia
I sure can't either..
Most people can't afford it. I'm a doctor and picked a job I could do in a wheelchair. Plus my husband works so we're dual income, no kids which helps. Nebraska Ataxia has a grant program to help but you have to live in the area. I planned for this to happen.
Thank you and best wishes !
I'm glad for the Good video though I wish you all the luck in the world makes me think of hope about my Dad that he can walk better.
I wish I could help
Waasoo. Amazing people.