I’m trying to get around. May take little bit. This is a great site though.
I have cerebellar ataxia and wanted to post an update to the forum in hopes that this information will be of some use to those out there. Normally upon being diagnosed a patient begins a slow decline and it makes it very difficult to manage this illness . I am very blessed to be in the San Francisco Bay area and then followed by the ataxia team at UCSF as well as being involved with the ataxia group over at Stanford .
What is absolutely remarkable and has my team of doctors scratching their head is how much improvement I have made in the last year. I am an athlete and I am blessed to have a coach who is also an ER nurse as well so he has a lot of the medical background on top of that kinesiology experience . We have posted many YouTube videos and if you search training with cerebellar ataxia you will find them .
My ataxia is what I deal with on a daily basis but it doesn’t define who I am as a person nor will I let that limit when I can do as an individual. I exercise daily I walk up to 5 miles a day and I spent two days with my coach. I follow a gluten-free diet and a low fodmap diet and have seen a remarkable progress in managing my ataxia. It is absolutely remarkable that I have seen such great progress and each and every day I find myself doing just a little bit more.
Some of the exercises I do are on a blue foam balance pad (Amazon) and I balance or try to on each foot for a total of five minutes daily . My coach also has me doing many other exercises that challenge my balance and coordination so if you view the videos I feel that they would be very beneficial.
I was offered IV IG treatment for the ataxia which I refused as I feel strongly and now have proven fact that this can be managed with proper diet and daily exercise. While I realize that many of you reading this have more varied forms cerebellar ataxia please understand diet/exercise plays a huge part in managing this condition
I am still not able to do many things such as write a bicycle we are high heels and go up and down the stairs without ripping a handrail but I know in due time that those things will all be part of my past
My goal in life in health and fitness has always been to pay it forward so I hope this information brings hope to those recently diagnosed or dealing with cerebellar ataxia that there is hope
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Does anyone have the problem I do? I walk with the walker but sometimes isn’t easy when my legs don’t co-operate. I get a sound like a bone is breaking , but the neurologist says if is a muscle twisting. It hurts when it makes the noise. If I sit, like at my computer, for long time and try to get up;’ I can’t walk till it pops again
hi Jubie,I am like you, I feel exactly the same. If you haven’t got ataxia people don’t understand. I get so depressed because I cannot go anywhere alone, I do have a scooter as well as a walker but if I go out on it I cannot get off it because I need my walker to walk! it’s driving me crazy. I am determined to go on holiday sometime this year even if it kills me. I hope you are a long way off the wheelchair, although I also have one of those, but don’t need it yet. I dread the day! Take care you are not alone. Bye for now. Joan x
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I have the same problem and you JoJo I take my electric wheelchair out, cause I can’t walk down the road anymore. It is so nice just getting out in the air, and feeling almost free again. Then you get where you are going and can’t get off cause no walker. Someone needs to invent a wheelchair with a walker built together; but then if you are on the walker, what do you do with the wheelchair. If it’s not one thing, it’s another.
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Nice to here from you, if you ever want a good moan I am a good listener. At least it gets it off your chest lol. You are my first friend on here, hope you write again. Bye for now. Jojo x
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I know what you mean a first friend. It is nice to have someone to talk to that is going through the same thing. refinisher was the first friend I had and was sure nice to have him. Him and me both have cerebellum ataxia. Or rather he knows he does , but my neurologist (at the time) said all the cells in my cerebellum were dead or dying. And that was 20 years ago. All Ataxia has somewhat the same signs. What do you have?
I know what you mean. Until my diagnosis, they thought it was Alzheimer’s. Now I am finding out that ataxia has gone through at least 4 generations of my family.
Thanks, Averylane. The Dr. asked me if an one in the family had Ataxia. I said no, but he didn’t say anything about skipping generations, but now we know. My Dad and Mom both had Alzheimer’s and I heard Alzheimer’s, Parkinson’s, and a lot other are in the same family cause the the neurologic and muscles.
I am a rare case, absolutely no members of my family have it and no members dating back to before 1849 have had Ataxia.
When I was being tested and diagnosed, my father and grandfather were adamant it was Friedreich’s, which made me think, they have seen it before, but neither speak to me anymore.
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Same as me, family does not have it and medicine does not help. Each day is a challenge! Cannot go anywhere, even stores,feel dizzy and eyesight is not gòod! It really has taken over my life! Very depressed and husband been diagnosed with stage 4 cancer!
I tend not to go out much these days as I always feel uncomfortable, I have started using a stick and although it helps, my depression kicks in, because I am only 33 and most people consider sticks for the elderly. I have never had problems with my vision, but have had dizzy spells.
I am sorry to hear the news about your husband.
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Ya Ataxia does take over your life can’t walk except with a walker, and all the usual symptoms of Ataxia. I have been lucky don’t have trouble with my eyes, except for dry macular degeneration. That means it is just there, but could become full blown at any time. I go places but feel out of place at times. My husband died last year of lung cancer from agent orange; and my Mom died last year of Alzheimer, so has been a bad year. I have Cerebellum Ataxia and have it for 20 years at least that’s when told I had it. Now that I look back I had signs of ataxia growing up.
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Saw it on the other Ataxia friends site. I think it is great that you are walking again. A lot of hard work and perseverance.
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Congratulations Ozzy!!
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hello I am new to this site and this whole AT disease that my son has who is 8 years old. we just found out that he has this in February of 2016. it’s affecting his motor skills and speech. we just came back from John Hopkins hospital in Baltimore Maryland where they have a AT clinical department. it was the best thing ever and I have more hope then I did before. I was educated in his disease and found out more information on how I can help him get through the day without him getting so tired and frustrated. he uses a wheelchair at school and outside if he has to walk a long distance. I’m still dealing with my own issues of the “guilty mom” syndrome. finding this site is a great way for me and my family to understand and know that we are not alone in this. so any tricks or anything new someone knows I am opened to support and suggestions. thank you
Lucy Wells
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I have Spinocerebellar ataxia type 6. Its hereditary. I’m 65 and was diagnosed at 59.
I didn’t know my Ataxia was hereditary cause no one in my family had it, and then I found out from some friend on this site, that it can skip generation. I have found out a lot of things since I joined here.
They want to test if it hereditary but my insurance will not allow it! I know my parents or grandparents did not have it!
Yes I started in 2014 and finally diagnosed in the fall of 2015. My husband now has Stage 4 cancer, I am nothing but a stress mess! I can walk in the house without a cane but go out with a cane! I started having trouble with my eyes, blurry and dizzy! I go to P.T. and my doctor put me on Parkinson’s medicine! Got finally diagnosed at Columbia Presbyterian in the city!