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Old 01-06-2016, 02:28 PM
Moonspell67 Moonspell67 is offline
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Join Date: Feb 2014
Location: Saskatchewan, CAN
Posts: 15
10 yr Member
Moonspell67 Moonspell67 is offline
Junior Member
 
Join Date: Feb 2014
Location: Saskatchewan, CAN
Posts: 15
10 yr Member
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Quote:
Originally Posted by rita ayers View Post
I am 62 yrs old & was diagnosed with Spinocerebellar Ataxia 15 years ago. It is a progressive disease and rare, no treatment for it.

Anyone out there dealing with this debilitating disease? My knees are going
on me from locking them trying to maintain some stability. I use a walker full time. Is there any help out there? I have no one that can even remotely relate to what I am dealing with on a daily basis.

Please would like to hear from one.
Hi Rita,
I am from Canada, am 42 yrs/old and I was diagnosed with SCA-2 in 2001. My great grandmother, my Grandfather, many of his siblings, and my Mother, myself and many cousins all have SCA-2, which is genetic. I took Mom to China in 2006 for stem cells. My Mom seemed improved, for a year or so. Now she slurs terribly and uses a walker full time and the ataxia has harmed her immune and digestive systems. She gets every bug going around and now weighs under 85 lbs. The stem cells I had seemed to give me a very minor improvement, for 4-6 months.
Mom and I take Co-Q10 or CoQH every day. It seems to help though I have relatives that had no benefit from Co-Q10.
I was quite lucky: I switched to a gluten-free diet. I also quit eating processed 'food'. I quit alcohol, smoking and severely reduced sugar intake. I am now very health conscious. I have difficulties walking, but on my treadmill I have a place to grip with my hands. I am only able to walk on the treadmill, I can no longer jog or run. Currently I walk 40 minutes at 3.7-4.6 mph. When I was 38 I was much more active and was able to run 1 mile in 6:51(on the treadmill) !!!
What I am saying is that trying to stay active, eating healthy and staying mentally positive has been the only thing that makes me think I am controlling ataxia. I aimed to be in the best, healthiest condition possible and it didn't cure me but my doctors said that besides having ataxia, I am in great shape.
But last July, I tripped on my dog's leash, landing hard on the pavement. I spent 3 months on the couch in pain. In all, it took 6 months to return to walking pain-free. Since then, my ataxia has really been devastating. My doctor prescribed marijuana to control night cramps, to help sleep, to combat depression and to boost my appetite. The marijuana does nothing for speech, gait, balance or strength, but it is extraordinary for the symptoms that it was prescribed to treat.
My advice is to eat healthy, avoid aspartame, MSG, fluoride and all neuro-toxins. Exercise as much as possible. For me, if I get less than 6.5 hours of sleep, my balance is just terrible. So sleep is very important. But it is impossible to sleep through a bout of night cramps. The marijuana is a miracle, as far as the helping me sleep 6 hours, getting up for a pee, then 2-3 more hours of sleep! I have never been depressed before, but last winter I was so low, not suicidal, but I was for sure thinking of it. Exercise and marijuana controls my depression. Depression is mentally one of the worst things for ataxia, as staying mentally positive is key.
I am like many ataxia sufferers. It is so nice to talk to someone else with the same, or similar health issues. I'd love to hear from you and any other people dealing with ataxia.

Jay
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