I read responses to the post by KimKillone with interest. My doctor (a movement disorders specialist with the Cleveland Clinic Extension site in Las Vegas) will not really commit to a diagnosis for me, but he won’t rule out MSA, or other atypical Parkinsonism, classic Parkinson’s (my DatScan was equivocal), cerebellar degeneration or a form of SCA. After two years of seeing him, with symptoms slowly progressing for 5-6 years, he finally is talking about gene mutation testing. We will see…
I’m messaging you all about diet changes. Can you elaborate for me on what sent you down that path, and what diet plan you followed, if any? How did you know it worked? I have a friend and trainer who helps me exercise, and he motivates me by asking, “Don, are you doing everything possible within your control to battle this?” Of course the answer is “No”. I can’t keep expecting to wake up one morning and this “dark passenger” to be gone…nor can I wait this out with my doctors who think nothing of telling me to come back in six months for follow up. Six months!! With my symptoms and my job, that’s an ETERNITY! I am still able to work, but for how long? It’s apparent to me that if anything is going to be done…I have to do it myself. I have to do something, even though I live in fear that what I try won’t help (yes, I worry about every little thing). I am asking for help to get me started on a search for any diet restrictions that may work for me…any help, information or advice you can give would be well received.
I spend thousands of dollars to have antibody tests with an alternative doctor. I followed the restrictive diet and ate none of the foods that I had antibodies to for the recommended 6 month period but it had no effect on my ataxia.
I go to Mass. General and see a neurologist who is a specialist in ataxia. He says I have MSA as the underlying cause of my cerebellum ataxia. I am out of work now since I was running a gym. I have a M.S. Degree in Human Performance. He tested me for gluten intolerance but nothing showed up. I am a vegetarian and used to a healthy food fanatic. Now I am more relaxed about food but still a vegetarian. I have tried energy work, sound healing. supplements, chiropractic, etc, but nothing seems to work. I started having symptoms about 10 years ago. Now I am in PT again. I exercise regularly and always have. Compared to others my symptoms are mild. I do not use a walker or wheelchair and still drive some.
Don't give up!
Nothing has helped me, I don't see any improvements so I think the spending of money for tests may be futile. but you have to keep trying.
Don,
It sounds you've been through the ringer and your frustration is understandable.
My personal experience has been going on a gluten free, whole food (nothing processed) diet. I eat real food. Mostly fresh produce. I do green smoothies that are nutrient dense. I follow a hybrid diet of my own making that is a combination of Paleo, Vegan and common sense. I rarely eat grains, but if I do they are whole grains. No dairy, added sugars, all organic. Lots of healthy fats from avocados, nuts, extra virgin coconut oil etc.
I have gluten ataxia and believe that many others are affected by gluten neurologically. I was unable to walk at all in 2008. Now I'm able to walk an hour on the treadmill five days a week. Plus I do strength training three days a week. It's not a cure, but helps me manage this "dark passenger".
Keep asking questions. Do the research.
Take care!
Suggested reading: "Grain Brain"
Julie in Colorado said:
Don,
It sounds you've been through the ringer and your frustration is understandable.
My personal experience has been going on a gluten free, whole food (nothing processed) diet. I eat real food. Mostly fresh produce. I do green smoothies that are nutrient dense. I follow a hybrid diet of my own making that is a combination of Paleo, Vegan and common sense. I rarely eat grains, but if I do they are whole grains. No dairy, added sugars, all organic. Lots of healthy fats from avocados, nuts, extra virgin coconut oil etc.
I have gluten ataxia and believe that many others are affected by gluten neurologically. I was unable to walk at all in 2008. Now I'm able to walk an hour on the treadmill five days a week. Plus I do strength training three days a week. It's not a cure, but helps me manage this "dark passenger".
Keep asking questions. Do the research.
Take care!
Hi Don,
Good diet and regular exercise has been extremely helpful in my case. No miracle reversal of symptoms, but everything has stayed pretty much the same since I was officially diagnosed via genetic testing over four years ago (SCA-6).
I used to eat pretty poorly. Lots of processed food, very little fresh vegetables or fruit.
I tried the whole gluten-free, Paleo diet, but noticed it didn't do much for me. I just eat healthier all around now. Lean meat, lots of fresh veggies and fruits. Except for the occasional Oreo, I pretty much never eat processed food now. I feel more alert and have way more energy than before.
Please do what you can to push for some type of an official diagnosis. Like you, I experienced the whole 'Well, we don't know what it is. Come back in six months' thing for almost two years. Finally, I had my neurologist order the testing. It is a big relief when you definitively find out what is causing everything. It's also important because there are so many different types of Ataxia, knowing exactly which one helps you prepare for it.
Good luck!
Hi Don,
I am in the same boat. I still can work, but my symptoms are getting worse and I am so worried about having an episode at work. I'm not married so I worry about who would take care of me when I get older. I look at my dad who also has ataxia and worry i'll end up like him. But thinking positive is the best way to calm the fears.
I dont have a gluten allergy but I started to not eat gluten to see how I feel. I stopped eating processed foods. I started to eat more fruits and vegetables. I tried giving up carbs and go paleo but that was hard. so instead, i cut my carb portions. i tried to cut dairy entirely, but i treat myself with ice cream during the hot days. I felt more energized instead of feeling bloated and sluggish.
For exercise, I do a lot of pilates and stretching everyday and i am currently taking swimming lessons.
Another thing to help me stay strong mentally and physically is I try to think of our veterans who fought in battle and lost their legs. They have synthetic legs but it must have been hard and painful to try to use them in the beginning. They kept trying and eventually they got it.
I know its not the same thing. Ataxia is degenerative. But that doesnt mean you cant try. You've got nothing to lose. Baby Steps.
EAT vegan with no gluten and exercise a lot.
See a cranial osteopath.
Seeing Dr. Brian Fogel at the UCLA Ataxia clinic-has anyone had experience with them?
a cranial osteopath.
I recommend a book by Nora T. Gedgaudas, CNS, CNT called, "Primal Body, Primal Mind" Nora recommends completely stopping the use of sugar and other suggestions like those that Julie in Colorado has already described. Good luck!
Bev Geiger