Cerebellar Ataxia

[Agility2]

I am new here so interested in hearing from others with this condition. What has shown itself useful to you and others? I find gross motor control such as walking and balance and my fine motor skills (e.g., typing and handwriting) hard on my right side.

[xray25]

mine is mt left as that was my dominient side now have to try right handed also balance issues swallowing issues

[HarryB Administrator]

Hi Agility2

I have been doing regular pilates since the beginning of the year. My core strength has improved and I feel much stronger generally, I feel this has improved my gross motor control. Any form of exercise is beneficial.

Harriet

[february]

Dear Agility2, A HUGE welcome to this site! My left side is a bit more affected then my right, although my gait/balance and dexterity are highly compromised on both sides (right and left). As HarryB said, I find exercises for strength and balance very beneficial, as core strength with this condition is so important! My best to you..., ;o)

[neta]

My left side is weaker but both suck. Exercise seems useful, as mentioned. Welcome. N

[Agility2]

Thank you for the warm welcome! I see from another thread that a couple of people mention that their condition has stabilized and stopped getting worse. That is good to hear. Once I started acupuncture and supplements to address inflammation my condition also got better and I am holding around steady, more or less. My handwriting is better compared to a few months ago when it looked like a 90 yo's. I am 65. I am thinking about getting a stability dog to help me walk and get up more easily. Any experiences to pass on on any of this?

[barb1228 in reply to Agility2]

Can I ask where you live and how you found an acupuncturist? Does it help with any of your other deficits? Did he/she ever treat ataxia before? Welcome to the site.

[Agility2 in reply to barb1228]

I live in California. The acupuncturist was recommended to me by a therapist. As with any other profession, acupuncturists vary from poor to outstanding, so I would ask other people their experiences first.

Ataxia's rare so I think I'm the first CA person for him. He treats me with Chinese herbs, supplements and acupuncture. He thinks what I have is an auto-immune disorder but we don't and maybe won't soon find out what it is precisely, so he's treating me functionally.

Before I started seeing him for CA I was deteriorating quite rapidly and felt like I was falling apart. I have been seeing him about once a week for about three months and after the first treatment I temporarily felt essentiallly like myself again, which was the first time I felt that well in three years. Since then the treatments have not been as dramatic, but if you first start out feeling horrible, then a major improvement is going to initially feel great because the contrast is so immense. You're going to feel more of a plateau as I have felt since the regular and ongoing treatments. My advancing condition has been held in check and I am hoping that they can in the next few years solve PD and Parkinsonism by finding a way to reliably rebuild brain cells from stem cells. There is an article in Life Extension Magazine that cites peer-reviewed studies showing that Taurine can build new brain cells.

I have found Methylator, Lions Mane, 5-HTP, Cordaceps, Tumeric, L-Taurine, exercise and Collagen to be especially helpful. I would never use Levo-Dopa because while it helps you initially, it also causes your body to reduce its natural production of dopamine.