Considering that for most of the ataxias as yet there is no cure by our traditional western medicine, do you know of anybody who researched Ayurvedic or other eastern medicines? I am starting an extensive scientific research in this field and would like to know if I can be of help (or join work) with anybody who may have already thought of this.
If you know somebody or are using herbal medicines which you think might be helpful for persons suffering from ataxia, please post here. All herbal medicine or eastern medicine, information I get I will try to research it from the medical point of view in order to discuss this with Neurologists and other researchers.
I am prepared to do anything to be of help for my daughter and others who are suffering from ataxia, so all your contributions are very important for me.
Hi Noel sorry about your daughter it must be hard, I have a daughter who is 22 and has sca2. She started showing symptoms at least 3 years ago and was diagnosed in 2012. She is unsteady when turning but when walking is fine if a bit slow. Going down stairs is a bit of a problem. She can walk backwards fine but struggles heal to toe. speech fine. She goes to gym 3 days a week and I do exercises with her 1 to 2 days a week. I give her100mg resveratrol, 400mg turmeric which contains curcumin, vitamin b complex and cod liver oil each day. Now I don't know if this is doing any good along with the gym but you have to try don't you. Her speech seems ok to. She's seems strong as an ox . Hope this helps.
I use Arnica Gel gel for pain relief. Massage it in hard to get through layers of skin then in 20 mins the ach allot of stiffness goes away. Sometimes I use it 2 times if the ach is really bad. Then I'm able to stretch more to get the oxygen into that area. It's not a cure but it helps me with living life. Try it on the legs and see for yourself if it can help release them a bit so they are not so stiff. I also massage it into the lower back because stiff legs tend to tighten the lower back too before Yoga stretches. Yoga stretches even little amounts on a regular basis help keep me moving. :0)
I'm taking 2T of Coconut oil along with Flax seed oil, cQ10, B complex, B12 under the tong, deep massage ever other week, Yoga and Pilates daily stretching. Meditation each morning, making sure I get all my vit in foods daily, making sure I get enough sleep I could go on and on. Life style makes a difference for me.
When I stopped all Gluten, all refined sugars (not fruit) preservatives, additives organic as much as possible, nothing in a box or bag my degeneration actually stopped. I have proof with my MRI's I was getting every year now every 2 because my nero said once it starts you can't stop it (old thought I think). But I told him there was always a first time for everything.
So he's been watching me now since 2006 and says there just might be something to what I'm doing. Hey, it's not easy but doable if there is a want, a real want which I have!
I wouldn't say a cure because I still have some symptoms that I have to deal with. So I really believe that the mind set is huge start and my faith helps me do it every day!
That's how it is for me! Hope this helps some! :0) Message me here if you want to know more too.
For me it has and is exercise. As soon as I stop, I start reversing. I eat gluten free, this is huge for me, any flour product causes an instant reaction. I am yeast free, grain free, soy free. I was sugar free for a time but couldn’t keep it up. I am alcohol free, caffeine free, soda free and eat purely organic.
For leg cramps I used a natural remedy. Will let you know the name later.
I use codeine #3 with codeine every day at least two pills. As soon as I miss pain and symptoms return.
I sleep a lot, whenever I need to.
I have to be number one, only someone who has ataxia would understand why. If we slip up, we may never go back again. It is a lot of work having ataxia. I have lost friends, family, clients due to lack of understanding. Sometimes I sleep for days.
My ataxia was chemical induced by minocycline, a drug I was taking for acne. While taking it I could not walk across a room without falling. I used a cane and at times a wheelchair. Doctors could not find what was wrong with me, said it in my head. Well they were right. Finally I was diagnosed with ataxia of unknown cause. I did the research and found the culprit.
Thank you all those who are contributing to this thread, HOWEVER I must point out that it is not advisable to start taking any herbal medicine without professional medical help. Herbal remedies may interact with treatment prescribed by your GP and some of these remedies are not even research based so they can be dangerous.
This is the research that I plan to do. I am looking up all eastern treatments, than compare these with scientifically based research than can indicate whether they are safe or not to be than prescribed by a GP
I see an accupunctuist,cranial osteopath, tibetan doctor,homeopath, &qigong doctor. Mostly I go every week. I take tibetan herbs, coq10,avh, procera and first greens with the boost. I do yoga and qigong daily. I do weights and eliptical daily. I sleep 8-9 hours daily. I am vegan and gluten free. Write me anytime
You might want to read Grain Brain by neurologist David Perlmutter (the surprising truth about wheat, carbs, and sugar -- your brain's silent killers). Theresa said:
I see an accupunctuist,cranial osteopath, tibetan doctor,homeopath, &qigong doctor. Mostly I go every week. I take tibetan herbs, coq10,avh, procera and first greens with the boost. I do yoga and qigong daily. I do weights and eliptical daily. I sleep 8-9 hours daily. I am vegan and gluten free. Write me anytime
You might want to read Grain Brain by neurologist David Perlmutter (the surprising truth about wheat, carbs, and sugar -- your brain's silent killers).
Jeannie Ball said:
I use Arnica Gel gel for pain relief. Massage it in hard to get through layers of skin then in 20 mins the ach allot of stiffness goes away. Sometimes I use it 2 times if the ach is really bad. Then I'm able to stretch more to get the oxygen into that area. It's not a cure but it helps me with living life. Try it on the legs and see for yourself if it can help release them a bit so they are not so stiff. I also massage it into the lower back because stiff legs tend to tighten the lower back too before Yoga stretches. Yoga stretches even little amounts on a regular basis help keep me moving. :0)
I'm taking 2T of Coconut oil along with Flax seed oil, cQ10, B complex, B12 under the tong, deep massage ever other week, Yoga and Pilates daily stretching. Meditation each morning, making sure I get all my vit in foods daily, making sure I get enough sleep I could go on and on. Life style makes a difference for me.
When I stopped all Gluten, all refined sugars (not fruit) preservatives, additives organic as much as possible, nothing in a box or bag my degeneration actually stopped. I have proof with my MRI's I was getting every year now every 2 because my nero said once it starts you can't stop it (old thought I think). But I told him there was always a first time for everything.
So he's been watching me now since 2006 and says there just might be something to what I'm doing. Hey, it's not easy but doable if there is a want, a real want which I have!
I wouldn't say a cure because I still have some symptoms that I have to deal with. So I really believe that the mind set is huge start and my faith helps me do it every day!
That's how it is for me! Hope this helps some! :0) Message me here if you want to know more too.
I also go to accupunture not that I see any difference but I like the accupunctuist. I am anxious in the a.m. but it passes. The neuros dont believe in any Eastern approach. I take IVIg, an immunology drug, for help. I manage to run w/o holding on, for 1/2 an hour each day. My bloodwork 4 gluten sensitivy was normal but I have decided to become gluten free though I am not a fanatic about it. To start, I have cut out bread and cake. I still cant figure out why I got this. But drs. think it is an auto-immune reaction. I am curious to know what you come up with. There was someone on this siet who was into Avuy... therapy. My neuro pooh-poohed it.
From Germany Afra NerveGeist. If I'm having a particularly painful day with my legs - I do a good hot soak in the tub. Scrub my legs to exfoliate. Dry off and rub on the NerveGeist. It gives me at least several hours of peace.
I have no pain. Just constant dizziness and speech impediment if I talk for a long time, that is beyond " hi, how are you?" or "beautiful bar mtzvah party". I keep conversations short. In the a.m., I have some stiffness but so do other women who do not have ataxia, I am told. Hard to know what's a normal aging thing, fear, or ataxia. Does the German Cream help with morning stiffness?
Mark Davidson said:
From Germany Afra NerveGeist. If I'm having a particularly painful day with my legs - I do a good hot soak in the tub. Scrub my legs to exfoliate. Dry off and rub on the NerveGeist. It gives me at least several hours of peace.
Thank you for your entry to my discussion. I was not contributing for the past weeks towards this support group as I was very busy preparing for my daughter's visit to Great Ormond Street Hospital which we had last week. (We just arrived today)
Unfortunately for my daughter we are still without any answer or idea of what is the disorder she is developing, however I am still interested in this discussion, if you feel that you would not like to write the treatment you use on the website you can email me on noelformosa@yahoo.com