My husband got his diagnosis of SCA 2 this week. We are in shock, having hoped that his ataxia was not genetic since there is no evidence of it in his family. I am scared not only for him but for our children who may have inherited his disease.
I would love to hear some stories of hope from anyone out there who would care to share their date of diagnosis and some details about how the disease has progressed for them. I wonder how long he should continue working, since I want him to enjoy his life and spend his time working on his health. He is in the early stages now, I think, with some slurring and some instability, especially when he is tired/sick. I would love to think he will be here in 25 years and that some sort of therapy will have been discovered by then to save him, and my children. Maybe that sounds naive, but it's the only thing that is holding me together right now.
I was 35 when I was diagnosed with SCA2. I was a dental hygienist. I was able to work 2 years after being diagnosed. There is hope. I see an ot twice a week. core and shoulder strengthening is key. He needs to stay actI’ve. I go to YMCA couple days a week. I’ve had SCA2 for 6 years.
I was diagnosed with sca2 at age 40. I stopped working in about 1 year and immediately was able to get disability. I also wanted to work on my health. That was a big reason for ending work. I do eat much healthier and exercise regular. I did PT for a while and they taught me some strengthening and core exercises to do at home. The sca is progressing but I am still mobile.
I have had symptoms of ataxia from Cerebellum Ataxia caused by MSA. I have had symptoms since 2008. I quit work as the Manager of a Corporate Fitness Facility a few years ago. I am on disability now but stay active with yoga, an elliptical trainer, rower, and weight training machines. My neurologist ordered P.T. and speech therapy. I found both helpful. Before allopathic doctors I explored many alternative modalities. My progression of symptoms is slow. I still walk unassisted by a rollator. My doctor is hopefully that there will be clinical trials I can participate in. Optimism is always helpful! I do daily gratitudes and count my blessings.
My husband has always been active, and goes to the Y most mornings so that is one good thing. I told him about your tip of working on shoulders and core, thank you!
Stevi said:
I was 35 when I was diagnosed with SCA2. I was a dental hygienist. I was able to work 2 years after being diagnosed. There is hope. I see an ot twice a week. core and shoulder strengthening is key. He needs to stay actI've. I go to YMCA couple days a week. I've had SCA2 for 6 years.
I would like my husband to get physio and speech therapy. He is thinking of trying yoga, and I was also thinking that tai chi might be a good idea for balance?
Debora Warner said:
I have had symptoms of ataxia from Cerebellum Ataxia caused by MSA. I have had symptoms since 2008. I quit work as the Manager of a Corporate Fitness Facility a few years ago. I am on disability now but stay active with yoga, an elliptical trainer, rower, and weight training machines. My neurologist ordered P.T. and speech therapy. I found both helpful. Before allopathic doctors I explored many alternative modalities. My progression of symptoms is slow. I still walk unassisted by a rollator. My doctor is hopefully that there will be clinical trials I can participate in. Optimism is always helpful! I do daily gratitudes and count my blessings.
I don't know anything about disability, but I know my husband will need it at some point. With a SCA 2 diagnosis I wonder if he will have any trouble with the insurance company or if the disability claim will be straightforward, and also how affected he will need to be to go on disability? We are in Canada. I'm not sure where you are, but was the application straightforward for you?
Jodie said:
I was diagnosed with sca2 at age 40. I stopped working in about 1 year and immediately was able to get disability. I also wanted to work on my health. That was a big reason for ending work. I do eat much healthier and exercise regular. I did PT for a while and they taught me some strengthening and core exercises to do at home. The sca is progressing but I am still mobile.
Dear Eire, I am 61 year young woman diagnosed with Sporadic Cerebllar Ataxia eleven years ago (unknown cause/symptoms 24/7), although I had very small symptoms starting about eight years before diagnosis. I continued to work as a social worker for three years after my diagnosis, but retired (28 years total) due to worsening ataxia symptoms. I started using a regular cane about five years ago after a bad fall, and now use a quad-cane for more stability. I bought an Access Active Rolator (I LOVE it) on Amazon last year for pleasure walking outside when the weather permits (I live in the US, in the State of Michigan, and we have bitter cold temps and snow right now, as it's Winter). I joined a wellness center and use it to exercise my muscles a couple days each week. The rest of the time I do exercises for strength and balance at home (I agree, core exercises are very important). I've done physical therapy and aquatic therapy, and found both very helpful. Also, I think it's very important to eat as healthy as possible, no processed foods, little sugar and little dairy. Try not to worry, although I realize this is difficult! Keep a positive attitude and live one day at a time, as no one, ataxia or not, knows what the future holds...,my best to you and your husband..., ;o)
It is important to remember that ataxia effects everyone differently. Sca types do not predicate progression as much as it simply effects you. All people get it differently. All types. And the amt. Of repeats ie cag repeats can also be a factor. Strengh and balance exercises are huge! Www.walkingwithataxia.comqtnsite. that guy is great is a gre
I was diagnosed with SCA2 in December. My symptoms are very mild, mostly poor balance. I’m also worried about my kids having it. Mine is hereditary.
I do PT and take Chinese medical herbs which help alot. I highly recommend tai chi, but qi-gong may be better. It is lower impact, I’m actually certified to teach it. Good luck
Thank you. I have taken down the name of the Rolator for future reference. It is all so scary. You are right, none of us knows what the future holds. It gives me so much hope to read about how others are living with ataxia. I really appreciate having somewhere like this right now...
rose said:
Dear Eire, I am 61 year young woman diagnosed with Sporadic Cerebllar Ataxia eleven years ago (unknown cause/symptoms 24/7), although I had very small symptoms starting about eight years before diagnosis. I continued to work as a social worker for three years after my diagnosis, but retired (28 years total) due to worsening ataxia symptoms. I started using a regular cane about five years ago after a bad fall, and now use a quad-cane for more stability. I bought an Access Active Rolator (I LOVE it) on Amazon last year for pleasure walking outside when the weather permits (I live in the US, in the State of Michigan, and we have bitter cold temps and snow right now, as it's Winter). I joined a wellness center and use it to exercise my muscles a couple days each week. The rest of the time I do exercises for strength and balance at home (I agree, core exercises are very important). I've done physical therapy and aquatic therapy, and found both very helpful. Also, I think it's very important to eat as healthy as possible, no processed foods, little sugar and little dairy. Try not to worry, although I realize this is difficult! Keep a positive attitude and live one day at a time, as no one, ataxia or not, knows what the future holds...,my best to you and your husband..., ;o)
I will look into gi-gong, thank you. Did other people in your family have it? How old were they when they got it, and how did it progress for them?
Stephanie said:
I was diagnosed with SCA2 in December. My symptoms are very mild, mostly poor balance. I'm also worried about my kids having it. Mine is hereditary. I do PT and take Chinese medical herbs which help alot. I highly recommend tai chi, but qi-gong may be better. It is lower impact, I'm actually certified to teach it. Good luck
I inherited sca 2 from my mom, my grandfather had it. He got it way into his 40’s, my youngest uncle got it when he was 11, my mother got it at 24, my aunt who is now 53 has just taken disability after working with it for 15 years. My onset is slow thank God but I control it with exercise and I’m 26 and Adopting children because I’m scared to lose my health and pass it on. My point is sweetheart don’t be afraid, live life and do as many things with him for as long as you can slowing down is inevitable but you can’t put a time on it. By thinking about it your just messing your self up. As for your children get them DNa tests when they are older and involve them in sports and exercise.
I slurred my speech real bad for years. After doing intense core strengthening exercises since October, my speech has improved. Ot says speech comes from core mucles.
I battle with fatigue. Tell him to go at his pace and rest when he needs to. Preserve energy by getting handicap tag for car. sometimes I go in a store, and get fatigued after my shopping trip, so thankfull my car is in handicap!
There are 12 people in my family who have/had ataxia spread over 3 generations. I’ve seen family who let their ataxia rule their lives. I refuse to be that way! I have done everything physically possible to fight this disease. You have to fight!