My opinion & view on my diagnosis of Ataxia, & having to live with it from day to day...?

I became aware on Sept of last year, of my diagnosis of SCA5 Ataxia. Eventhough my Neurologist said that I actually start showing symptoms of the disability around 2003-2004(around the age of 35, I'm now 45). I hear a lot of things about Ataxia, that will or can possibly put you into a depression & it's hopeless kind of mood. But I see having Ataxia to really be, more of a state-of-mind, aswell as a physical one. Don't, get me wrong...I've definitely, being to my fair-share of Therapy sessions...& I still follow my Therapists exercise regimen that was giving to me, for necessary strength training & control for my lower-body & legs...But that was actually being alittle pro-active on my part, recommending that I would like to start for my own future benefits & well-being. I even recommended sessions with a Health Counsler, because I knew that I could & possibly would fall into a depression & it's hopeless type of mood without any kind of help or local support group...& I didn't want to go down that road if possible, & was willing to do what I could to not be in that situation. Please, don't get me wrong. When I say the actual day I was diagnosed, had me feeling alittle down, & scared. Because I knew then that this was something I just could get over like I once thought, & this would actually be a life changing event for me.

I'm just thought to give my honest opinion & true feelings, & hopefully alittle inspiration aswell...Because, being diagnosed with this disability...Has definitely being challenging for me, inwhich I have had to make changes & try to adapt the best I can...I've just heard so many things dealing with the negative side of having Ataxia, I just felt to say something or add alittle inspiration aswell.

-Ataxia, that will or can possibly put you into a depression & it's hopeless kind of mood. But I see having Ataxia to really be, more of a state-of-mind, aswell as a physical one-.

This is an important element you state Steven, and overlooked, as it conflicts with specialists uncharted area, and one that I personally uphold in connection to my living now in a more relaxed country/culture.

Well put Steven

I was diagnosed this year in July.So I understand what your saying first hand.But what discouraged me the most about my ataxia was other peoples comments.I had friends and family say that I had given up.I even had them say to me just get over make yourself walk.I wished I could do that and get vision and mobility back.And be able to move arms and legs right.If I had listened to them I would have gotten really discouraged.But the Lord and praying and one daughter has really helped me.I had some really good physical therapist also who have encourage me.So ataxia may be a battle for me but I never am alone fighting it.Thanks for your comments.I have sca7 I have been told.Earlene

Where do you Steven? I am 49 with FA and run the Leeds Ataxia branch. It helps to meet other similar people and to know you are not alone. Mark

I'm so impressed with your opinions and candor! We can't go back with this disease and yes it's a HUGE surprise-I constantly make deals with the devil to no avail! We just have be a positive influence, not have pity parties and be great spokespeople for Ataxia. Have a wonderful and blessed life!

It sounds like you have a great attitude! Remember that the mind and spirit do affect your physical health, so a positive attitude is wonderful. My Dad was never diagnosed but to this day I believe he had one of the Ataxias. He never gave into it, was grateful every day for my Mom’s good care, and insisted he would live to be 100! He helped others by participating in research, and he never complained. He died 10 years ago this December at age 76 and lived a more fulfilling life than many who never experienced a neurodegenerative disorder. So keep the faith! God Bless and Happy Thanksgiving!


Yes this is inspiring. I am thinking of going into graphic design as a career and work from home... I just hope that dexterity isn't crucial and that I can do it without too much adjustment. I could retire, start studying graphics design and do it for extra money... I still have hope. I have my eyes (for good I hope), I have my brain, I have friends etc. Just be thankful for the small things because when you're on your deathbed, you realize that that was what life is about in the long run. It would be physical therapy, classes, and friends... side money through graphics design.

Keep going. It's hard but just keep going.


I, like the rest of many of us, had never heard of this and have been trying to deal with it for about 3 year. I had to leave my kids with their Dad (divorced) and move to FL near my folks. I was depressed about everything for a long time and then realized I was just feeling sorry for myself. That was not helping anything. I now workout about 3-4 hrs/day and went from dragging my butt on the ground and taking a shower while sitting in the tub, to a walking sticks with basically leg braces. My thoughts are that you can give in or try harder. I may slide back any day, but not today! Get mad!!! and fight with everything you have or can learn. Smile :)

Dear Steven, How refreshing to hear your positive out-look! I also do everything I can to keep my muscles as strong as possible, going to a wellness center at least two times a week. I do weight machines for my arms, legs and core, as well as 20 minutes on a NuStep machine. When I take pleasure walks outside, I use my Access Active Rollator. I also do balance exercises in my home. No, it's not easy, but definitely worthwhile!!! I use a cane when I leave my home, but am able to walk, extremely carefully, in my house without it. I've done physical therapy and aquatic therapy (my insurance will only pay for so many visits per year) each year. Currently, I'm seeing a chiropractor twice weekly for pain in my back, neck and knees. I was diagnosed with ataxia eleven years ago, although had very small symptoms starting about eight years before diagnosis. Anyway, keep on keeping on, as you're an inspiration! ;o)

Steven -I love your attitude, we should all take a lesson from it. I think sometimes when we are told we have a disability we become more disabled than what we actually are. I know there is probably canes, walkers and wheelchairs in my future but I'm going to do everything I can to maybe prolong the inevitable. I'm going to go down fighting!!!