I understand your concern for your children but, in my opinion, it is best to try and put this out of your mind [easier said than done!] .. it's better not to have tests as any positive results would have to be declared on life insurance.
I have several members with SCA2 in my support group and the main thing I notice is their slurring of speech. Speech therapy [I am told] is more beneficial when given before problems arise both with speech and swallowing.
Hope this helps xx
I have SCA 2 also. I believe there are two paths to take. One is finding support, having a positive attitude, finding a good doctor, and a healthy lifestyle that includes a good diet and physical activity, physical activity of what ever you can do.I chose this one on the other hand my sister who had ataxia also, chose the path of drugs and alcohol, inactivity,and a poor attitude. I believe this contributed to her demise, she died one year after being diagnosed eight years ago. I believe the path I chose has definitely helped me in living as healthy as I can. Stay strong.
What stands out to me is how important it is to stay positive. I know that is true. Instead of focusing on what we might not have I need to focus on the life we do and will have. I won't lie... this is not easy just yet. But, it helps me to hear about all of your situations and to know that we are not alone. Maybe there will be a treatment one day? I don't want to hold on to false hope, but it helps to think that maybe, at least in my children's lifetimes, something will be discovered to at least slow down cerebellar atrophy.
Some more advice
I would become an information sponge, gather information from the web, state and federal agencies, and anywhere else you can. Find out what will work in your case, and remember that everyone that has ataxia is effective different. Be careful some information is a hoax. I would seek help in financial, retirement and estate planning. If you have ataxia, you are running a marathon.
I would seek a consultation with a genetic counselor to explain the genetic risks and what information children should know depending on their age.
As far as employment, before letting them know about the ataxia I would first see about programs that they may have and if you would be possible to do his job modified somehow.
I was a firefighter for nearly 25 years and when I was diagnosed they were very supportive and I was put into a desk job and was there until my retirement was approved.
I feel lucky sometimes that I have the ataxia because being retired for nearly 8 years I went to every game that my son played in high school, he played basketball, soccer, and lacrosse. I was even named his soccer teams mascot. I have also spent a lot of time vacationing at my friend's cottage up in New Hampshire. I volunteer every day at our towns Council on aging preparing home delivered meals for the elderly. I am still now involved in the local Boy Scout troop even though my son has stopped going six years ago. I've enjoyed wonderful vacations with my wife including a cruise to Bermuda.
I've modified some things to help me in every day life, like installing two sets of handrails on the stairs around my home. I sometimes use a walking stick on uneven surfaces. I use a recumbent trike for exercise.
I believe, not slowing down has definitely helped me and I always tell people try to do whenever they can do to be active.
Jack
Thanks, Jack. We have three children, also, and they will be at home for many years. I doubt my husband will be able to continue his current job for all of them, and I don't want him to work until his quality of life deteriorates. I hope he can leave sooner than that and enjoy his life, and our life together. I am trying to see that this might be a blessing, somehow, and focus on that. Or, at least, there might be blessings in here somewhere.
I am curious about your travel. Do you find it difficult to get travel insurance with your condition? Is it much more expensive? I was thinking we'd never be able to go anywhere again so I would love to hear how you handle that?
I see from your profile you are from Canada but how travel insurance here worked with a cruise here is that I worked through a travel agent and I purchased travel insurance to cover the cost of the trip in case it was medically necessary to cancel. I believe the total cost of the insurance was a small percentage of the total cost of the trip. Also, I rented a scooter to have on the ship in case walking around would not work, as it turned out the ship was large enough where I did not detect any motion as the ship sailed, on a cruise we requested an accessible cabin which is much larger than a regular cabin and it has a barrier free bathroom, you would need to contact the cruise line directly to request a cabin of this type, also we chose to sail on a large ship so there was much more room to get around. We let the cruise line know I was disabled and they provided great care.
Also I know here in the states there are companies that cater to people with disabilities and also here there are companies that specialize in adaptive sports activities such as skiing, water skiing, golf, kayaking, and climbing. I am quite sure if you look around you may find things in your area.
I was also thinking about activities I like to do, I play cards and do puzzles. there are people in my support group that have started to paint, work with clay, and played the piano. My neurologist told me these things were important to do to build new pathways in the brain since some are damaged from the ataxia. There is a Dr. here in the states that has ataxia that says dancing helps.
My father was diagnosed with hereditary CSA2 and when he was telling me, it sounded like me. I just always thought I was a klutz. I was diagnosed about 10 years ago. The balance has not changed yet but in the last few years my typing/writing and speech have started to be affected. I used to type 65 wpm and now it's about 30 wpm. Sometimes I slur words.
This disease is incurable, progresses however it wants. Some people have some symptoms and others have other symptoms and each symptom progresses differently from person to person.
Exercise and sometimes diet seem to help, but there is no standard of what exercises he should do. He should do things that challenge his balance. i.e.- yoga, tai chi, dancing (couples), swimming. I'm working with an occupational therapist and a physical therapist to help me, They seem to be helping. They are teaching me how to use my core and how to shift my weight where it needs to be. It is changing my balance. It's not perfect, but it's better.
As far as working, work as long as he can. I'm on disability and I can't do the work that I used to so I've had to find different interests. I'm not sure where you are located but here in Wisconsin, USA, the state has a Division of Vocational Rehab that helps people find jobs that have disabilities.
My husband tried yoga in the past but quit because he fell over... He decided to try again today :)
He is going to try to work as long as he can. I feel really guilty about this but I think it is probably good for him to be productive and keep busy, for now at least while he can.
eire said:
My husband tried yoga in the past but quit because he fell over... He decided to try again today :)
He is going to try to work as long as he can. I feel really guilty about this but I think it is probably good for him to be productive and keep busy, for now at least while he can.
There is something called "chair yoga" where you do yoga from a chair. I am sure there are other exercises you can do from a chair, also look into a recumbent trike (Sun)
I will suggest the chair idea to him, thanks. He said it went well but parts were pretty challenging for him today.
The recumbent trike looks great for both of us :) Where do people buy them?
check this out http://sunseeker.bike/ they even make tandem trikes that two can ride, http://www.terratrike.com/tandem.php
My trike has 21 speeds I have put 1000's of miles on it, the only draw back its two wheels are in the back of the rider, other designs the two wheels are in front of the rider, which I think is more stable, http://www.catrike.com/
eire said:
There are lots of seated poses in yoga. Maybe try a gentle class or work with a yoga therapist on a personal at home practice. Classes may not be right for him.
My husband tried yoga in the past but quit because he fell over... He decided to try again today :)
He is going to try to work as long as he can. I feel really guilty about this but I think it is probably good for him to be productive and keep busy, for now at least while he can.
Those look really interesting, thank you! How do they do on hills?
Jack said:
check this out http://sunseeker.bike/ they even make tandem trikes that two can ride, http://www.terratrike.com/tandem.php
My trike has 21 speeds I have put 1000's of miles on it, the only draw back its two wheels are in the back of the rider, other designs the two wheels are in front of the rider, which I think is more stable, http://www.catrike.com/
I live in an area with big hills and I have no problem, but I am in good shape. I ride a 10 mile route several times per week. There are also bike paths in the area I go to. I also get together a few times a year and go on rides with people from our support group that have ataxia, but I think if you can find a route with out big hills would be best.
If you are interested in getting a recumbent trike there are two styles one is a tadpole style and the other is a Delta style.
I have a Delta which sits higher and is easier to get on or off, but this has two wheels back. The tadpole is lowered to the ground which may be difficult to get on or off but the wheels are in front which I believe makes it more stable if you have to turn fast.
In our area there are companies that rent several types of recumbent trikes to people with disabilities. I would definitely try to find a place like this to find one that fits. I definitely love to go on rides with others.
Also the bikes tend to be long, but I have a vehicle that it fits in. They make a special bike rack also.
Thanks for all the info, Jack! I'm looking into geting a recubent bike..., ;o)
Yes, thanks! Very interesting. So much information here! We live in a very hilly place now but part of our plan for the future includes a move somewhere flatter where there are lots of bike paths. This would be perfect!
If hills are a problem try to find a gym that has a stationary recumbent bike, one where you sit down like your on a chair, build up stamina on that first then if you can hit the road!
In the U.S., social security has certain conditions they automatically approve as long as you have the documentation. One of them is neurological conditions. CSA falls under this. I don't know how Canada is. Hope this helps.
eire said:
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.
We are in Canada. I don't know how disability works here but we are looking into everything now to understand how life will look in the future. When the time comes I want to be prepared. I think he could stop now, based on fatigue and stress, but he wants to work. It is normalizing our lives while we process all that has happened this year while we have been waiting for the final diagnosis.
Right now my husband is working and making time to exercise every day, focusing on weight training, aerobic exercise (elliptical) and some swimming. I feel that we caught this very early but I don't know how it compares to others? His speech is slightly slurred and his body seems to fall backwards at times. He has some numbness in his foot/leg, which is new since we sought out a diagnosis, so I see that it is progressing. I hate the words "disease duration" - a whole separate post I want to make! - when I read all of the studies. It's so upsetting. We both want him to stop working as soon as he feels he needs to, and I am trying to get a plan in place for that time so that we know what to do. When I read the "disease duration" I want him to quit immediately, though, and enjoy his life....
Kay said:
In the U.S., social security has certain conditions they automatically approve as long as you have the documentation. One of them is neurological conditions. CSA falls under this. I don't know how Canada is. Hope this helps.
eire said: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.