Hello, My fiance was diagnosed with SCA2 about two years ago. I'm fairly new to learning about all this, since we have only been together for under a year. I'm also really new to this site so if I post under the wrong thing I'm sorry! I'm wondering if there is anything that can help slow down the progression? I've read alot about physical therapy and purchased a wii fit for us to do but I'm wondering if there is anything else out there? Also, he seems to have problems sleeping, is this a common issue?
Minmay,
See a MD doctor who specializes in nutrition he will know what to do. SCA2 is prone to nocturnal leg cramps the doctor
should know how to treat this also.
I have cerebellum ataxia and it progressing slowly. I do not need a walker. I see an ataxia specialist in Boston, MA. I heard about a balance vest that may help. Your partner is lucky that you are so interested! P.T. did not help. I see a osteopath and did chiropractic and acupuncture for years and I think that slowed the progression.
Yes, I scream in my sleep and talk and jump. I think this is neurotically based as I have other problems. I take an rx to sleep. It only helps some.
Some people get results from anti-depressants or steroids. They help with balance.
Magnesium may help with cramps. I was told to exercise regularly.
I hope this helps! Mangala
Exercise exercise exercise. I have SCA 2 and I work out like crazy, my Dr. believes that a healthy lifestyle and moving has slowed my progression. Find a good doctor that knows what they're talking about
I agree with Jack. Exercise and healthy lifestyle is the best one can do.. my neurologist told me that .. I am 71 now and still walking [wobbling] with a rollator.
1 Like
Dear Minway, Welcome! Exercises for strength and balance is very helpful! Also, physical therapy was helpful. I do stretches each day, as muscles get so tight. Eating as healthy as possible (I'm gluten, dairy a sugar-free), no processed food, lots of fresh (organic) veggies and fruits, as I feel better eating this way. I was diagnosed with ataxia eleven years ago and now (four years) use a quad cane, but am still walking, yahoo...,ha! My ataxia is progressing, albeit slowly. My best to you and your fiancee...,;o)
Hello and Welcome!
My mom and I have ataxia. As of yet we do not know which type it is. I've been really lucky though since mine seems to be progressing slowly. My mom though her's is progressing much faster than mine. We're both able to still drive and I'm able to walk without a cane or walker. In my opinion exercise is the reason why I'm progressing slowly. I go to the gym every day. I lift weights and walk on the treadmill even though I have to hold on. I also ride my bike 20-30 miles a day when the weather is nice. Our neurologist told me since I work out and stay healthy that's the way of keeping my bones healthy and having me still prevent me from falling or having major balance problems. I still have to be careful though especially when I'm in crowds. We both go to a chiropractor and that helps us from becoming too stiff. If I didn't exercise and eat healthy, I'm sure my ataxia would be worse. My ataxia has affected my small motor movements though. I wish there's something I could do to help this.
Thank you everyone for your replies and kind words!
Debora- I’m not so sure he feels quite so lucky when I’m nagging him about exercising:-).
He doesn’t use a cane or walker. Normally just holds my hand when we go out for balance. I’m going to have to see about a chiropractor and look into getting us both on healthier diets.
his small motor movements are definitely affected as well:-/. I know it drives him bonkers because he used to have such nice handwriting, but now I tend to write on things for him.
mariauemura said:
Hello and Welcome!
My mom and I have ataxia. As of yet we do not know which type it is. I’ve been really lucky though since mine seems to be progressing slowly. My mom though her’s is progressing much faster than mine. We’re both able to still drive and I’m able to walk without a cane or walker. In my opinion exercise is the reason why I’m progressing slowly. I go to the gym every day. I lift weights and walk on the treadmill even though I have to hold on. I also ride my bike 20-30 miles a day when the weather is nice. Our neurologist told me since I work out and stay healthy that’s the way of keeping my bones healthy and having me still prevent me from falling or having major balance problems. I still have to be careful though especially when I’m in crowds. We both go to a chiropractor and that helps us from becoming too stiff. If I didn’t exercise and eat healthy, I’m sure my ataxia would be worse. My ataxia has affected my small motor movements though. I wish there’s something I could do to help this.
If you are Japanese I might know what you and your mom might have. There is a special blood test to find the problem it found my problem. I am Japanese and I am 72 years old and I was able to solve my ataxia. I was treated at 71 and have no new symptoms and the ones I had improved. I have only one symptom
now gait and balance disorder do to my cerebellar atrophy and peripheral nerve damage in my lower legs. If you are interested in finding out post a reply.
mariauemura said:
Hello and Welcome!
My mom and I have ataxia. As of yet we do not know which type it is. I've been really lucky though since mine seems to be progressing slowly. My mom though her's is progressing much faster than mine. We're both able to still drive and I'm able to walk without a cane or walker. In my opinion exercise is the reason why I'm progressing slowly. I go to the gym every day. I lift weights and walk on the treadmill even though I have to hold on. I also ride my bike 20-30 miles a day when the weather is nice. Our neurologist told me since I work out and stay healthy that's the way of keeping my bones healthy and having me still prevent me from falling or having major balance problems. I still have to be careful though especially when I'm in crowds. We both go to a chiropractor and that helps us from becoming too stiff. If I didn't exercise and eat healthy, I'm sure my ataxia would be worse. My ataxia has affected my small motor movements though. I wish there's something I could do to help this.
Everyone has given you very good information but no one has touched on a subject which I cannot, in good conscience, ignore. Knowing that SCA2 is the definite diagnosis is one thing and can be addressed accordingly.
I am the caretaker for my 67 year old husband who first exhibited symptoms about 20 years ago. He is now almost totally bedridden. When we got married there was no testing available and very little was known about ataxia. We knew it (whatever it was) was present in one branch of the family but did not think it extended to my husband's side. Of the family branch where it was present - the father's condition was fairly stable for nearly 40 years. Of his four children, however, one passed away in his 20's, another in his 30's, one is in a nursing home, and one child is apparently does not have the condition.
My strongest advice to you is that, if you plan on having a family, you get genetic counseling. If I had known then, what I know now, I would still have gotten married, but I would not have put another generation at risk. Because the knowledge and testing was not available back then, I have 3 children and 2 grandchildren at risk for a condition that I would not wish on my worst enemy.
I realize that this is a support group, and what I'm saying may not seem supportive, yet, in a way it is. The knowledge and technology is present today that was not available years ago. My strongest advice is to use that technology, get genetic counseling, and act accordingly, using their information and help to protect a future generation, a generation that cannot choose for itself whether to be born or not, but will have to live with whatever choice you make.
If I have offended anyone, I am truly sorry, but, as I said, I cannot, in good conscience, say nothing.
Hi Kat,
He and I have already discussed this in full between us. We are in our early 30's so that is definitely something that has come up. I've had my own issues though so the chances of that happening are not very good. He already has a wonderful 10 year old who will be my step daughter and we've discussed adoption and other options as well.
KatCap21 said:
Everyone has given you very good information but no one has touched on a subject which I cannot, in good conscience, ignore. Knowing that SCA2 is the definite diagnosis is one thing and can be addressed accordingly.
I am the caretaker for my 67 year old husband who first exhibited symptoms about 20 years ago. He is now almost totally bedridden. When we got married there was no testing available and very little was known about ataxia. We knew it (whatever it was) was present in one branch of the family but did not think it extended to my husband's side. Of the family branch where it was present - the father's condition was fairly stable for nearly 40 years. Of his four children, however, one passed away in his 20's, another in his 30's, one is in a nursing home, and one child is apparently does not have the condition.
My strongest advice to you is that, if you plan on having a family, you get genetic counseling. If I had known then, what I know now, I would still have gotten married, but I would not have put another generation at risk. Because the knowledge and testing was not available back then, I have 3 children and 2 grandchildren at risk for a condition that I would not wish on my worst enemy.
I realize that this is a support group, and what I'm saying may not seem supportive, yet, in a way it is. The knowledge and technology is present today that was not available years ago. My strongest advice is to use that technology, get genetic counseling, and act accordingly, using their information and help to protect a future generation, a generation that cannot choose for itself whether to be born or not, but will have to live with whatever choice you make.
If I have offended anyone, I am truly sorry, but, as I said, I cannot, in good conscience, say nothing.
hi KatCap, I totally agree with you, my partner had signs of ataxia when he was in his thirties, he thought the way he walked was caused by being a jockey in his twenties and his speech he said was the way it was normal,as you say back in 1975 in australia, doctors didnt know about ataxia, alot still dont know about the condition. We had a son, when I look back now from about 13yrs old his and co-ordination was not the best but he played sports, swam etc . It was only when he hit 25 that he was having trouble speaking and eating, we went to St Vincent Hospital here in Sydney, found a wonderful specialist who diagnosed him with ataxia, he struggles every day, fights the condition, and feels so angry about it, he doesnt blame his father, but he feels it sucks, he has trouble being excepted by groups especially if woman are in the group. He is 39yrs old now and has lost hope in ever getting married, and is very sad that he will not have children even if he did find that special lady he said he would not have children in case they got this condition also. My heart breaks to see him struggle, his balance is getting worse he has had some falls, thank god nothing broken . He reluctantly uses a walking stick, his speech is getting to where myself or his sister find it hard to understand him at times. So I do agree with you, thank god there is a test now , I dont know about here in australia and will have to get him to ask his specialist if there is. thank you for enlightening me about this. He cant get work, as no one will give him a go, because he cant speak clearly, and his balance is bad they wont take him on .This is so humiliating for him and he feels that his goals and life are just passing him by, his depression at times is debilitating for him
KatCap21 said:
Everyone has given you very good information but no one has touched on a subject which I cannot, in good conscience, ignore. Knowing that SCA2 is the definite diagnosis is one thing and can be addressed accordingly.
I am the caretaker for my 67 year old husband who first exhibited symptoms about 20 years ago. He is now almost totally bedridden. When we got married there was no testing available and very little was known about ataxia. We knew it (whatever it was) was present in one branch of the family but did not think it extended to my husband's side. Of the family branch where it was present - the father's condition was fairly stable for nearly 40 years. Of his four children, however, one passed away in his 20's, another in his 30's, one is in a nursing home, and one child is apparently does not have the condition.
My strongest advice to you is that, if you plan on having a family, you get genetic counseling. If I had known then, what I know now, I would still have gotten married, but I would not have put another generation at risk. Because the knowledge and testing was not available back then, I have 3 children and 2 grandchildren at risk for a condition that I would not wish on my worst enemy.
I realize that this is a support group, and what I'm saying may not seem supportive, yet, in a way it is. The knowledge and technology is present today that was not available years ago. My strongest advice is to use that technology, get genetic counseling, and act accordingly, using their information and help to protect a future generation, a generation that cannot choose for itself whether to be born or not, but will have to live with whatever choice you make.
If I have offended anyone, I am truly sorry, but, as I said, I cannot, in good conscience, say nothing.
Hi Minmay,
You have relieved my mind considerably. No one seems to ever address this issue which should be every bit as important as how we manage to survive the day to day challenges of living with ataxia. Since you have already discussed and settled the issue of future generations you can now concentrate on the battle. You have all my best wishes for a successful fight. K
Hi piaf -
I can understand your feelings re your son as I am dealing with them myself re my children.
My experience is with Spinocerebellar ataxia type 2. If I remember correctly from info given me years ago there are 7-9 types of SCA but testing was only available at that time for 2 of them. I don't know how far they have progressed since then.
My son is in his early 40's and is still working. However, he has prepared for the future by establishing 3 Internet businesses which will enable him to continue working if he becomes disabled to the point that he can't continue in his present job. Does your son like computers? If so, maybe he could turn that into something positive as my son did.