I am very curious to know if this ataxia disease has crippled a person to
go from a walking stick, to a walker then to a wheelchair and then gradually
reverse it's self due to drugs or vitamins so that the person is on a cane
or walker.
Not with drugs/vitamins but Kati Lea has achieved remarkable improvements with exercise and willpower.
If you read her blog, I am sure you will find it inspirational. Just Google Kati's blog or here's a link
Almost but not yet..I have faith that I will..reverse this very soon..
Have you typed in ataxia.into your browser..?
I Think..I have gluten ataxia..so I'm hoping for reversal to come.
Dear Jack, My neurologist has always told me to keep my muscles a strong as I can. I agree with JC, as keeping core muscles strong is so important. Also, thigh muscles (front) in legs tend to get weak faster than quad muscles (back) a pt once told me. Google exercises for strength while sitting. I was diagnosed with ataxia eleven years ago, although I had small symptoms starting about 8 years before. I've used a cane for about four years now when I leave my home, but am able to walk, carefully, in my home without it. Also, I bought an Access Active Rollator online, and pleasure walk frequently outdoors with it. It was more difficult at first, but has become easier the more I do it. I exercise for strength and balance most days, as well as stretches. You can do many different exercises and stretches while sitting. Determination is key, as everything gets a bit easier, if you keep it up! ;o)
Oh how I wish I could agree to this discussion...about..keeping your core strong..
Normally I'd say..ABSOLUTELY..I worked out my whole life...but..it's..so.different now.
I've lost 35+pounds.
Muscle mass..Is gone
I have a difficult time just standing..
I have to hold someone's hand to walk..
Dear Diana, I'm so sorry for you! Everyone is different, depending on the type of ataxia they have and for how long, etc.! Do the best you can, as I'm routing for you, as ataxia is SO frustrating and challenging! ;o)
Thank you rose..that is very nice of you to say..
I can't even be sure I have ataxia..
My neurologist says NO.. but doesn't know what it is!!
But IF I want to try gluten free diet...go ahead.!!!
rose said:
Dear Diana, I'm so sorry for you! Everyone is different, depending on the type of ataxia they have and for how long, etc.! Do the best you can, as I'm routing for you, as ataxia is SO frustrating and challenging! ;o)
I dont know if doing exercises is better for everyone or not but i get a lot of exercise by doing just normal work at home and I can tell I am worse every day by just a little bit and its noticeable. I suppose some ataxias may be attack your body then relax like in multiple sclerosis. I watched a film on nat geographic about alligators or crocs and fish they had a problem that was nerve related, and it took them 6 yrs to find out they were lacking thiamine because of eating a type of fish that had taken over in the area and all of a sudden they had a cure, no more dead fish and crocs. So I tried takeing thiamine just in case. Still the same so back to the drawing board. Jerry
Hi - A lot probably depends if yours is progressive or not.
In my specific situation, I feel stronger at some times rather than at others - which is a “product” of many things - i.e. diet, supplements, exercise, sleep, my internal dialogue/belief in myself vs. self-doubt, and many other things.
Also, I feel that things are more authentic and fluid when seated/using a wheelchair vs. standing/using a walking stick, walker,or rollator…just simply walking takes a lot of my attention, cognitive ability, and concentration now.
One of the things that I’m hyper-aware of is muscle atrophy. I do light exercise / certain yoga poses that are floor-specific and that I can handle with my deficits; in addition to some meditation and visualization on a daily basis. Now my exercise is just routine, rather than feeling like a hassle. It might not be for everyone, but it does help me with a lot of my issues.
Diana,
I am researching glutenataxia with a neurologist and on my own. I am gluten-sensitive and am about to publish a book on the dangers of the gluten-free fad diet, tales of A Gluten Free Gypsy.I am gluten-free and grain-free, and follow a Paleo diet. The fad can lead to serious diseases, so it is important to know if you are gluten-sensitive, Celiac, or somethingelse.
My balance problems seem to improve when I don't eat grains. It can also be an inner ear problem and vertigo, which are both affected by gluten and grains,
That said, an elimination diet will tell you if you are gluten-sensitive. Google it. Celiac is a disease and gluten-sensitivity is not. I have a lot of free information I can share from the top gluten experts online. Here are two of the most important.
246-GFSELFTEST4162013.doc (217 KB) 247-GLUTENSENSITIVITYVIDEO2242013.doc (23 KB)Dear JC, As you've suggested this before, I've been doing this when I'm sitting and reading, watching TV and driving. You're so right, as I notice a difference...,yay! Also, it's easier to do now! Thanks from the bottom of my heart (and rib cage...,ha!) for this great suggestion! ;o)
Hi, well all I can say Last January 2013. I could walk fine. I went to a cane in may 2013. To a walker in July 2013, to a wheelchair in late september 2013. I am now in a powered scooter. I can barely walk with a cane or walker and still fall.
This is where I'm at now.
I was diagnosed in 2010 after 4 years of symptoms and increasing imbalance. I now use a rollator 100% of the time. I just joined a gym and am working on strengthening, I try to follow JC's advice about posture!
I started going gluten free last October and noticed an almost immediate improvement in my speech. I'm still slurred, but not as much, and I don't have the tightness that I was having in my neck/throat when I would talk.
I have been in contact with Dr. Tom Clouse. He is a fellow ataxian that travels around helping those of us with balance issues, learn how to walk without a rollator or cane. He is coming to my area in August. Check out his website www.walkingwithataxia.com and see what he does and where he will be - there are two videos posted and testimonials from people he has worked with. I am looking forward to working with him especially since I seem to be on another downward spiral.