I was diagnosed by MRI with cerebellar ataxia in my early 30’s 15 years ago. And it was recently named type 30 by a doctor who analyzed my blood.
I see a neurologist every 12 months or so and he tells me that my degeneration is unavoidable. My question is can we help ourselves? Nutrition, lifestyle and toxin interventions, do they help us? Dr Dale Bredesen’s protocol seems to help people with alzheimers so I wondered if it would possibly help ataxias too? Dr Perlmutter’s Grain Brain seems successful too and many others not strictly accepted by some members of the medical community. Does anyone have experience with this?
Thanks in advance as sometimes I feel as though I am chasing an impossible dream.
what is type 30? Hereditry Ataxia?
Yep hereditary. Sorry and post must be at least 20 characters…
There is currently no cure but exercise (any kind) seems to help. Physical therapy can help (just make sure they take care of neurological patients not orthopedic, there is a difference). I have heard gluten free can help. You have to try and see what works for you. There is no standard of treatment.
As with most Ataxias, it’s trial and error when it comes to therapy, medication, changes in diet/nutrition/lifestyle…
Coping requires a lot of patience, and sometimes ingenuity:smirk: But, when you think of the alternative, it’s a ‘no brainer’ xB
Hello, I also have Cerebellar Ataxia, but mine is not hereditary. I have come a very long way with the help off my neurologist suggesting a Neuro therapist and Inderal
( Propranalol is the Generic ).
This was after strength training. I still have to use a walker and adaptive objects, but considering how severe my Ataxia was this is wonderful. Granted this isn’t a cure, but I’ll take it
Best of luck
My therapy has been spotty since January of this year mainly due to Aetna refusing to keep paying for services. I am applying for Medicare supplemental insurance so hopefully this change will help. Therapy is very helpful but once I start, the insurance stops paying and I get worse again. I’m also arranging for MRI under sedation at a local hospital. This is because due to the ataxia I can’t hold still. After this procedure, I hope to get into rehab for two or three weeks. That should help greatly. That’s my experience.
I have had good results with Craniosacral Therapy (CST), reduced slurred speech, improved balance, tempered my startle response. Daily meditation also significantly down regulated my nervous system (less jumpy, more able to handle crowds), but I am not as consistent with meditation as CST. CST can be found at www.upledger.com
If you go this route, talk to therapists first to see if their approach fits your personality.
Thanks for the comment. Do you mind telling me how often you get the CST?
I used to get pretty regularly, like every 1-2 weeks. Now more like 3-5 weeks. Depends on my budget. I have gone longer, but it is better for me not to wait too long. It is really a personal process, everyone is different. Generally I think people know if it will make a difference after 4 sessions, and sometimes sooner. And maybe go every week for a few visits, and then spread them out. The main thing is to find a craniosacral therapist who you are comfortable with. Even if that means you try a couple.
I have found acupuncture to be helpful combined with sacral massage. I had persistent headaches which were gone after two weeks of treatment. In addition my slurred speech improved to gone some days and minor on others. Balance and walking has continued to progress.
Please forgive ymy asking a dumb question: does acupuncture hurt? I’m afraid to try it as I hate needles.
Acupuncture does sometimes hurt a little as the needles are placed. But they are extremely thin and not like any other needles you may have met.
If something helps with any of our symptoms it is worth a little discomfort in my opinion
so the needles for acuputure are not the same as the ones for spinal tap I take it…I think I might need this and I am so scared.
Thanks for the tip on CST - in 6 years of dealing with ataxia and neuro issues this is the first time it hits my radar?
Acupuncture needles are very tiny, I mean thin.
Yes, I am trying to get the word out, CST is not on most people’s radar. If you find it helpful then spread the word!
I spend my summers in CO to get away from TX heat and I think I found what appears to be a very experienced and qualified therapist nearby. If it works for me I’ll be sure to blog about it. Thanks!
Curious to know how CST worked for you. There are some fabulous Craniosacral therapists near CO.