Dear Stephanie, thank you for sharing your story. It’s very much like my story, at 54, I began having balance issues. I had to hang on to railings when going up and down stairs and would seemingly lose my balance for no reason, at work. Talking became difficult and my handwriting looked like sloppy forced printing. I had numerous other issues. A brilliant doctor put me on a gluten free diet. It worked. I’m 6 years gluten free and can walk normally, my handwriting is very nice and my “halting speech” problem has gone. I hope that you read this and feel encouraged. I’m a pharmacist, and 2 of my children now show early signs of the same issues. My other symptoms of chronic fatigue, brain fog, and many other have resolved as well. God Bless!!
@MaeganMemories I just came across your reply 🎄☃️ At 8-10 weeks I noticed improvement, in handwriting, vision, fatigue really improved. Balance took longer and it was more gradual. At four months it improved, at a year still improving. Gluten Free is a must! 🙏
Dear Lori, did you just switch to glutenfree products or is it a very healthy diet, that saved you? I'm so glad that I found your comment! I am eating glutenfree now for 6 weeks, but nothing has changed yet. I have cervical dystonia and balance problems. And I also still eat sugar and dairy for example.
@@maike5227 I went about 95% gluten free. I ate a cookie here and there, but all GF bread and pasta etc. No diet pop or beer. Really you can eat about everything, nuts, any protein, vegetable, oats, French fries etc. And wine! Some symptoms faded quickly, my chronic fatigue disappeared by the 3rd month. Balance was the most stubborn unfortunately. It took about 6 months before I could walk upstairs without hanging on. Going downstairs took a few months longer. Research says the brain balance center can have permanent damage unfortunately. I’ve made much progress, but still struggle to stand on one leg. I’m thrilled I did improve what I have 😀
Thank you so much for your answer! It gives me hope. The only thing doctors here in Germany offer, is botox. But I don't want to take poison every 2 months with no cure in sight. I am glad you are getting better and I wish you all the best further on! I just ordered the book "Grain brain", but I guess the diet will be pretty extreme...Nice to hear, that I could still eat some normal foods. You gave the best advice from all the people I have talked to! Thank you, really!
@@maike5227 🕊️🕊️🌷. Stay positive, the diet is pretty easy. Aim to reduce 95% of dietary gluten. Don’t stress over soy sauce and things like that. It can fit into your lifestyle. Plan to buy the basics, GF bread, pasta, bagels and cereal. Things you normally eat. And GF flour if you bake. Fast food and restaurant food can be a little tricky. Avoid hamburger buns. You can drink alcohol and wine, no beer (or gluten free beer) No diet pop-very important too. I wish you the best of luck, really!
Thank you for sharing. I'm 62 now and I'm going worse by the day. I've just given up gluten and it has helped a little. The nystagmus has lifted a bit and the depression has eased slightly too. I would give anything to get back to normal again. I don't mind getting old, I don't want to be sick. Thanks again.
Eliminate oil se well sugar as well they hurt the gut need them gone for full healing. Youngavuty tangy 1 scoop per 100lbs body weight. Chagha and Lion mane for boosters. Coral calcium d3 and k2 very important for long term healing.
When you say you gave up gluten, did you give up all grains? Because all grains have gluten except some people say oats does not have gluten, but I’m horribly allergic to oats as many many other people are I tested it.
Hi, My name is Nam. I got Cerebellar atrophy three years ago. And I feel very grateful to have "National Ataxia Foundation" I pray the cure comes out as soon as possible.
A strict grain-free diet. And I mean STRICT. Study the list of grains and all their derivatives so for example, Brown Sugar is corn based, so is citric acid (found in a lot of vitamins and prescriptions). But they're in a lot of things. This is the cure.
It is a crazy symptom. My daughters once called 911 it was so bad. My neurologist told me when it happens to breathe out as forcefully as possible when it happens. Sounded impossible since I’m gasping for air, but the last two times it’s happened I was able to do it and it worked.
Stephanie, Me? My first time with Ataxia was when over a friend's apartment on the third floor and as I left his place, I started down the stairs. I fell down them to the next landing. He heard me, helped me down the rest of the steps. After reaching my place, fell down those steps also. I had to hold on the railing really hard just to use them. I my truck, I had to hold on to the steering wheel so that I wouldn't fall over. That was in 2006. I've been able to overcome a lot of the symptoms but still have to watch doing certain things. I can't dance, run, climb a latter or move very quickly, turn my head in a rush or look up in a quick manner but I get by. Sometimes, I might walk into a doorway and hit the frame. Pickle ball is out of the question! ha ha
I had a brain bleed 23 yrs ago....I lost balance...foggy brain....I was 49.....owned a daycare....but all that changed may 23,2000....was told I had ataxia.....iwalk with cane....hand tremor...my bleed was in cerebellum....I'm getting worse at 73 I fall and pass out at times
I Too Have SCA# 6 my name is Elton Hester I Currently Live in searcy Arkansas! But I spent my childhood in Independence mo and my teenage years in a small town South of Kcmo called PLEASANT Hill no ! For the last 22 years I have been an Over the Road truck Driver. Then in August 2018 that came to an end! I stopped driving so people wouldn’t get hurt my vision moves up and down as well. And I see 4 of Everything in each eye!! Can you Say Sick!
Elton, please consider a gluten free diet. Your eye issues may resolve, brain fog and poor memory as well! It will take 8-12 weeks to find out. You may experience a miracle as your health rebounds more than you can imagine. Eliminate flour from your diet, and eat everything else. Buy Budweiser Redbridge beer. Not bad. Buy gluten free bread, and order gluten free pizza crust. That’s all you need to do. Good Luck!
Dear Stephanie, thank you for sharing your story. It’s very much like my story, at 54, I began having balance issues. I had to hang on to railings when going up and down stairs and would seemingly lose my balance for no reason, at work. Talking became difficult and my handwriting looked like sloppy forced printing. I had numerous other issues. A brilliant doctor put me on a gluten free diet. It worked. I’m 6 years gluten free and can walk normally, my handwriting is very nice and my “halting speech” problem has gone. I hope that you read this and feel encouraged. I’m a pharmacist, and 2 of my children now show early signs of the same issues. My other symptoms of chronic fatigue, brain fog, and many other have resolved as well. God Bless!!
@MaeganMemories I just came across your reply 🎄☃️ At 8-10 weeks I noticed improvement, in handwriting, vision, fatigue really improved. Balance took longer and it was more gradual. At four months it improved, at a year still improving. Gluten Free is a must! 🙏
Dear Lori, did you just switch to glutenfree products or is it a very healthy diet, that saved you? I'm so glad that I found your comment! I am eating glutenfree now for 6 weeks, but nothing has changed yet. I have cervical dystonia and balance problems. And I also still eat sugar and dairy for example.
@@maike5227 I went about 95% gluten free. I ate a cookie here and there, but all GF bread and pasta etc. No diet pop or beer. Really you can eat about everything, nuts, any protein, vegetable, oats, French fries etc. And wine! Some symptoms faded quickly, my chronic fatigue disappeared by the 3rd month. Balance was the most stubborn unfortunately. It took about 6 months before I could walk upstairs without hanging on. Going downstairs took a few months longer. Research says the brain balance center can have permanent damage unfortunately. I’ve made much progress, but still struggle to stand on one leg. I’m thrilled I did improve what I have 😀
Thank you so much for your answer! It gives me hope. The only thing doctors here in Germany offer, is botox. But I don't want to take poison every 2 months with no cure in sight. I am glad you are getting better and I wish you all the best further on! I just ordered the book "Grain brain", but I guess the diet will be pretty extreme...Nice to hear, that I could still eat some normal foods. You gave the best advice from all the people I have talked to! Thank you, really!
@@maike5227 🕊️🕊️🌷. Stay positive, the diet is pretty easy. Aim to reduce 95% of dietary gluten. Don’t stress over soy sauce and things like that. It can fit into your lifestyle. Plan to buy the basics, GF bread, pasta, bagels and cereal. Things you normally eat. And GF flour if you bake. Fast food and restaurant food can be a little tricky. Avoid hamburger buns. You can drink alcohol and wine, no beer (or gluten free beer) No diet pop-very important too. I wish you the best of luck, really!
Thank you for sharing your story! My two sons have ataxia from the father's side of the family. Blessings to you
Bless you, dear lady. Prayers.
Thank you for sharing.
I'm 62 now and I'm going worse by the day. I've just given up gluten and it has helped a little. The nystagmus has lifted a bit and the depression has eased slightly too. I would give anything to get back to normal again. I don't mind getting old, I don't want to be sick.
Thanks again.
Eliminate oil se well sugar as well they hurt the gut need them gone for full healing. Youngavuty tangy 1 scoop per 100lbs body weight. Chagha and Lion mane for boosters. Coral calcium d3 and k2 very important for long term healing.
When you say you gave up gluten, did you give up all grains? Because all grains have gluten except some people say oats does not have gluten, but I’m horribly allergic to oats as many many other people are I tested it.
I tested it by the process of elimination and after three months with zero oats, I had a normal amount or a large bowl and I was sick for three days
Hi, My name is Nam.
I got Cerebellar atrophy three years ago.
And I feel very grateful to have "National Ataxia Foundation"
I pray the cure comes out as soon as possible.
There is a herbal cure for ataxia, I got cured recently from ataxia and I confirmed it is gone. All thanks to Dr nafuar I meet him on UA-cam.
A strict grain-free diet. And I mean STRICT. Study the list of grains and all their derivatives so for example, Brown Sugar is corn based, so is citric acid (found in a lot of vitamins and prescriptions). But they're in a lot of things. This is the cure.
@@hosannayeshua yes thank you check out Peter Osborne, DC the gluten-free Warrior
PS I make no money from him. He just helped me get better.
Thanks for sharing, doing some checks to see if I have it. I have poor physical coordination
Thanks for sharing. I'm 23, my ataxia hit me around 21.
Thank you!!!! ❤
Sending prayers for her well-being🙌🏼
Thanks for sharing your story 🙂
Oh my! I feel for you! I am SCA 2.
Thank you for sharing your story. I have MS and share all of your symptoms. The choking on air is the most concerning.
Choking on air? I do that all of the time. I have been diagnosed with ataxia. I never heard of anyone else choking on air except you. OMG!
It is a crazy symptom. My daughters once called 911 it was so bad. My neurologist told me when it happens to breathe out as forcefully as possible when it happens. Sounded impossible since I’m gasping for air, but the last two times it’s happened I was able to do it and it worked.
Stephanie, Me? My first time with Ataxia was when over a friend's apartment on the third floor and as I left his place, I started down the stairs. I fell down them to the next landing. He heard me, helped me down the rest of the steps. After reaching my place, fell down those steps also. I had to hold on the railing really hard just to use them. I my truck, I had to hold on to the steering wheel so that I wouldn't fall over. That was in 2006. I've been able to overcome a lot of the symptoms but still have to watch doing certain things. I can't dance, run, climb a latter or move very quickly, turn my head in a rush or look up in a quick manner but I get by. Sometimes, I might walk into a doorway and hit the frame. Pickle ball is out of the question! ha ha
I had a brain bleed 23 yrs ago....I lost balance...foggy brain....I was 49.....owned a daycare....but all that changed may 23,2000....was told I had ataxia.....iwalk with cane....hand tremor...my bleed was in cerebellum....I'm getting worse at 73 I fall and pass out at times
I also live in Kansas City and I have sca3. No fun, but we get by
I had dttpke got me in the cellvelum hard quality of life gone
I choke on air and water also, to the point of passing out. Thought it was just me.
I Too Have SCA# 6 my name is Elton Hester I Currently Live in searcy Arkansas! But I spent my childhood in Independence mo and my teenage years in a small town South of Kcmo called PLEASANT Hill no ! For the last 22 years I have been an Over the Road truck Driver. Then in August 2018 that came to an end! I stopped driving so people wouldn’t get hurt my vision moves up and down as well. And I see 4 of Everything in each eye!! Can you Say Sick!
There is a herbal cure for ataxia, I got cured recently from ataxia and I confirmed it is gone. All thanks to Dr nafuar I meet him on UA-cam.
Elton, please consider a gluten free diet. Your eye issues may resolve, brain fog and poor memory as well! It will take 8-12 weeks to find out. You may experience a miracle as your health rebounds more than you can imagine. Eliminate flour from your diet, and eat everything else. Buy Budweiser Redbridge beer. Not bad. Buy gluten free bread, and order gluten free pizza crust. That’s all you need to do. Good Luck!
WoW
Ataxia Balance Crutches help people with ataxia balance issues
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