I saw my dr the other day and had many questions about progression that were unfortunately answered with "I can't say/don't know." I'm going through the genetic testing now to see if I have one of the known ataxias, but if I don't I guess there will be a lot of uncertainty in the future. My symptoms have been progressing quickly in the last few months (for example in August I wasn't using anything to help me walk but now I can't leave my apartment without crutches). I'm wondering if anyone has had a rapid progression followed by kind of a plateau of their symptoms? Was there anything you did exercise-wise that helped? I've been exercising a lot to try to help but so far I haven't noticed much of a difference. I'm hoping there is something I can do that will slow this fast progression. Even just hearing someone's story of how they went from progressing quickly to slower would give me hope! :) Thanks a lot


Hi I got diagnosed around ten years ago it was a slow progressed slowly for the first five years but in the last say four years it progressed quite was walking a little funny balance getting dodgy to walking stick to a matter of year half.with mine I was told alcohol and smoking will only make it worse.but then so many types of ataxia out there.


I have ataxia 40 years before I saw any major changes in my condition over the last year I have lost my balance and walking can be difficult my left leg spasms sometimes. I still walk unaided, I use to wear a small heel everyday now I wear flats. I have decided not to give in, I guess my worsening gait is due to my arthritis. My plan has started with changing my diet whole foods and antiinflammatory foods have reduced the arthritis pain, now I plan to wear my low heels in the house for 30 mins a day......I'm hoping for a counter balance affect. I also have started exercises for balance (from youtube) and have a Xbox connect I use twice a week to help with co ordintion. I have been following this for 5 weeks now, I'm no worse or better but I feel energised and motivated rather than feeling sorry for myself and accepting my lot. BTW I don't take any medication yet which I like, as I know what contributes towards a bad day. Really need to give up work to look after myself but that's another plan. To me exercise and diet is the key and avoiding too much stress. Hope this helps x

I have cerebellar ataxia with intention tremors, cause is still unknown. I had rapid progression beginning January 2013. Within a few months I went from funny walking to walker to wheelchair (which I still need). But after about nine months I began swimming, about a mile five or six days a week. I don't think it is a coincidence that my symptoms stopped progressing around the same time. After about a year of swimming I've even seen some improvement in my ability to control tremors. This has allowed me to resume using a stationary bike for more exercise. If nothing else, exercise is crucial to avoid atrophy which results from not walking.

I a progression of my problems every day and it is slight but very noticeable. I am ready for a wheelchair if I need to go faster to go to the bathroom or answer the door. I also have noticed my eyes are being affected and feel very slight progression each day.

What I did was to start cycling using an adult trike. I found it strengthened my legs and core, and thus increased my stability.

I dont know if the healthy diet and daily exercise [wii fit and passive pedaller] have helped slow progression.

I think everyone has different progression for different reasons but I live in hopes.


Ataxia is an insidious disease with no known cure, mine is Spinocerebellar Ataxia 4 that recently was noted to be a sub-type of SCA 1. There are times of progression and plateaus. I have taken a different approach to my disease, I am pro-active, take supplements, medications to help with the tremors and the depression. I eat balanced meals and exercise in a pool, it makes it so much easier to exercise. I am constantly aware of where my feet are due to numerous falls, but if I stand feet together and look down at my feet, I fall face forward, if I close my eyes while standing I fall face forward, so it's important for me to be aware of this thus eliminating those types of falls. I have recently discovered that I have to have some type of light on at night because the darkness so greatly affects my balance that I fall. The biggest thing to me is keeping a positive attitude, never give in and never give up. Is there hope? They are finding new cures for rare diseases every day and our hope is that they will discover one for each of us in our lifetime!

My symptoms started in2010 and wiithin 5 years it has progressed. I can walk with a walker 8 steps and find it very difficult to turn and sit on a wheel chair, chair, bed etc. I am confined to my bed but other faculties are in tact. My right hand is affected and anxiety is worse. I take CERAGEM and my therapist transfers me to a chair where I do exercises with weights, standing, balance exercises etc. I continue to fight and stay positive
Hoping to walk to get out of my room in my mobility chair! Stay strong and good luck.

Progresssed rapidly.OK completely 7 years ago.Now can't walk at all,have speech difficulties, violent tremor and have vision probs and depression.Have done all the right things re exercise eating healthily etc but feel I am fighting a losing battle.Neurol is suprised.Just as well we all progress at diffferent rates.

I woke up this past June 26 to go to the bathroom and when I got out of bed started shaking/tremoring so bad I could barely walk. That was the beginning of my experience with Ataxia. I have been to 2 neurololgist, going to pulmonologist day after tomorrow, and going to start trying the Therapy's this week. The violent tremors are only occasionally. But I am having to use a cane most of the time now...(in 5 short months) before that I was perfectly fine..had a job and all. I've had an MRI showing damage to the white matter and a slight stroke. When bloodwork comes back from 2nd neuro doc I'm supposed to have spinal tap. So far the diagnosis is Cerebellar Ataxia, Primary Orthostatic Tremor, and something called "Binswanger's Disease". All with positive family history and I used to be a drinker. My speech is going, I slobber, I'm either crying or wanting to beat somebody up....My daughter ordered me a medical ID that says I'm no drunk I have Ataxia....boy oh boy..BUT Keep Positive!!! Postive Attraction brings Postive!!!! I've always been a big believer in that!

I was diagnosed with Sporadic Cerebellar Ataxia eleven years ago (unknown cause), although I had very small symptoms starting about eight years before diagnosis. I continued to work up until eight years ago (retired due to ataxia) and started using a cane (now a quad-cane) about four years ago, when I leave my home because I fell. I'm still able to walk in my home, very carefully, unassisted. For pleasure walking, I use an Access Active Rollator, which I love! I do exercises for strength and balance in my home, as well as at a wellness center. At the center, I use weight machines to exercise my arm, leg and core muscles, as well as a NuStep machine, because it has a seat you sit on while exercising arms and legs. I just try to keep moving, although it's difficult!!! I also try to eat as healthy as possible and rest when tired. ;o)

Just got out of the shower and had to stop half way thru and just stand there cause I was so tired.....pulmonary doc today...... Thanks for the reply.

I’ve had SCA for 14 yrs. --slow progression. Then faster and had to use walking sticks. I believe i’m struggling with an autoimmune condition that’s really affecting this disease. No longer use walking sticks and rarely have loss of control of leg muscles as before. Conbination of thinks are helping: exercise, diet - have eliminated foods causung inflamation processed foods and for me-milk and use a c-pap (huge help). And elimated a lot of stress.

Thanks for your responses, everyone. I guess I don't know what I was thinking... this is by definition a progressive disease. I guess I'm having a tough time accepting that especially given where I was a year ago (totally physically normal). This is very frustrating

Hi. Find a Neurologist who specializes in Ataxia. Otherwise you are wasting your time. Keep moving and get a Rollator. It helps you balance and therefore you tend to want to get outside and walk. Good luck.