I am 58 and get down sometimes with this lousy disease. I had never heard of it before my older brother started talking and walking like he was drunk. Then he was tested and Ataxia came into our lives. No other family member had this - where did it come from? Then I started showing signs and here I am today with Cerebellum Ataxia. I was tested and they can’t assign a number to mine whereas I exhibit numerous traits. Knowing there is no actual cure, pill or lifestyle change that can help, I just try to stay away from stressful situations or people that stress me out, try to eat healthy, take my daily naps. Knowing you are out there to offer encouragement means that we are not alone - we understand all the stuff we all go through. So Thank You to everyone We Can Get Through This Together, We Are Not Alone!!! God Bless…
Suzi,
Although I have Ataxia it is the result of brain tumor surgery. Thank you for your comments.
Suzi,
If none of your parents or relatives have ataxia it might be caused by a nutritional deficiency. I thought for years it was caused by a SCA mutation I went to many neurologists over 16 years and none could diagnose my problem. I finally went to a MD doctor who specializes in nutrition she found my problem on the first visit she knew what test to run It is called
Spectracell micronutrient test. You can Google Spectracell and read what they do. If it is a nutritional deficiency it can be treated and a full recovery. I got treated for my deficiency some 20 months ago and it slowed or stop the progression. The only symptom I have is gait and balance disorder due to my cerebellar atrophy I found my problem at 71 if I had been treated at 58 I would have had a full recovery.
Thanks Steve. I see the Doc next week and I will request this test. Wouldn’t it be wonderful!!! Btw I have an awful diet, the same all my life as my brother!!
Suzi,
If you have a awful diet your body might not be getting all the vitamins and minerals it requires to function correctly.
I was not getting the proper nutrients mainly thiamine and magnesium. I found out Japan had a epidemic in the 1800s up to 30% died in 1926 they found the problem thiamine deficiency my dad had a diet of no thiamine this mutated his thiamine transporter gene and this mutation is passed on to offsprings. So nutrition is very important for good health. If you donot know what to eat and what vitamins and minerals to take you might see a nutritionist they can help you.
Yes there is a lifestyle change that can help, staying active. My sister and I were diagnosed at the same time seven years ago. She took the road of doom and gloom, alcohol and drugs, and physical inactivity. I chose the road of eating healthy, physical activity and mental activity. She got a wheelchair and I got a recumbent trike. My ataxia has slowly, very slowly progressed over the seven years. At my annual appointments my Dr. has said I am rock solid. I know that this is due to a healthy lifestyle and physical activity. On the other hand my sister died in October of the following year. So I would say do whatever you can do that makes you happy and physically active. It definitely helps!
Jack
Hi Suzi! I know how you how you feel. I'll be 58 in Sept. This is a lonely disease. I still work but it can be difficult sometimes. But I keep rollin. Pun intended. Hah! These support sites are great. I get down and frustrated all the time. Just try to hold my head high. Luckily I have a very loving husband. I call him my "blindside". That helps me a lot and I try to do things like raft the Ocoee and be as independent as I can. Like the everyday things…I vacuum on my knees and would rather clean the floors by hand on my knees. It's much safer. A little hard on the knees though. It's still an embossment for me! Thanks for your message. We are not alone!
Allie, how do you get up again? I could achieve more on my knees but cant get up!! I find I can achieve things in sitting position though.. or just holding on to my rollator.
Suzi, I agree with everything you say .. although, according to my neuroloogist, my CA is probably from birth, I didnt start having significant falls until my late 50's. I was advised to stick to healthy diet and lifestyle with as much exercise as possible. I have always used vitamin and mineral supplements according to need. I read a book about how to recognise deficiency when I turned 40 years. I am 72 this year [November] and still walking with aid of sticks or rollator.
I dont have speech or swallowing problems but I dont think that is due to vitamins or exercise.. just the luck of the draw as to which type of ataxia you have.
I run a local support group with help of Ataxia UK and together with this forum, it is my mainstay.
Keep posting and stay safe, Patsy x
Allie, what a good idea. THat (sweeping & mopping) is something that is neglected here as it is the most diifficult for me. I am supposed to get a provider soon but think it is good for me to do what I can--so a provider may be a mixed blessing. I have always "done everything myself" or it has gone undone. It is hard to admit that I can not do what I used to and ask for help even though Hubby tries and wants to help. When girls come I try to work along side them & get exhausted. This site means a lot. It would mean even more to not have this affliction. People who don't know or understand about Ataxia always ask if I am doing better--I wish,
I am 71 now and have had this since 2011, It seems to get prossively worse,
Patsy,
You are doing great for 72. Kudos!!! I do a lot of weights to stay strong. I am lucky that we have a gym at work and it's right across the hall from my office so I spend my lunch hour in there. It really helps. Oh, did I say it was easy getting up off the floor…HAH! That's great you run a support group. We have one here in TN, USA. It's based in Nashville which is 3 hours from us so we make a weekend of it. We usually meet every 3 months at a restaurant and keep in touch by email in between. I don't know what type I have. Neuro didn't want me to know but I am gonna ask him to test me in May. Let's keep in touch!
Granny H, we just have to keep going no matter what! But be safe. I get the same comment "you doing better?" I too have a problem not being able to do things! I used to do everything and was an athlete too. But "it is what it is". Keep on rollin!!!
Dear Suzi, I agree with everything you have said! It's helpful to have understanding and support with ataxia, as it's so frustrating and challenging! I'm so glad this site exists! Of course, I wouldn't "wish" ataxia on anyone, but it is what it is for us! So good to realize we are not alone and can share with others! I too have Cerebellar Ataxia (Sporadic Cerebellar Ataxia - unknown cause), and I have symptoms 24/7. My neurologist and I have no idea why I have this, as no one in my family, as far back as we know has/had ataxia except me! One of my favorite sayings is, "a woman (or man) is like a tea bag, she (or he) never knows how strong she (or he) can be until she (or he) gets into hot water! I consider myself to be like that tea bag...,ha! My best to you and all..., ;o)
No we are not alone. I do wish there was a cure, I wish there was a magic bullet that fit all of us. It is what it is and each of us can only do what we can. I must say it has been an adventure. For me to walk every move is a calculated one even then a fall can occur in a nanosecond. I use a wheelchair most of the time because it listen the chance of falling. I have always been the independent type and asking for assistance at times was a learning experience. I remain somewhat uncomfortable when I have to exercise the option.
Riding my street trike allows a sense of freedom and affords exercise. Ataxia is truly a life changing event.
I do find that people are always asking how are you, do you feel alright or suggesting this that and the other. They mean well. As posters implied, each of us are in charge of doing what works for ourselves.
For me I learned that I had to loose weight in order to make it easier to get up after a fall.
Pasty I too cannot get up. One day I was home by myself and I went in to kitchen to get my vitamins and trying to walk back to the bedroom I got scare and felt I was going to fall, I drop to the floor but found out that I couldn't get up, so I don't do that any more (smile). I too have a wonderful husband who helps me a lot, My biggest hurdle is exercising, I know it will help but it;s so hard to get started, my short term goal is to exercise as much as possible, I am looking for a gym or senior citizen center to go to get out the house. This support has been my life line, without it I know I would be in a dark place. Jack what you said about your sister is sad but it reminds me how important it is to exercise. Love you all!
Hi,
I too have cerebellum ataxia. Although another doctor diagnosed me as having late stage Parkinson’s. I guess the symptoms are similar. There is no known cause and no known cure. I have just joined the group and ,look forward to the companionship of you all.
Kay Z.
Dear Kay, A HUGE welcome to this site! There are wonderful people on here for support and understanding! We sound like our ataxia's are similiar, in that the cause of mine is unknown also. I just keep moving the best I can, as I find that the greatest help of all! ;o)
Hi Patsy. Do you know of any support groups in Kent ? I live near Bluewater and just wanted to connect with others. Thanks Bev x
Patsy said:
Allie, how do you get up again? I could achieve more on my knees but cant get up!! I find I can achieve things in sitting position though… or just holding on to my rollator.
Suzi, I agree with everything you say … although, according to my neuroloogist, my CA is probably from birth, I didnt start having significant falls until my late 50’s. I was advised to stick to healthy diet and lifestyle with as much exercise as possible. I have always used vitamin and mineral supplements according to need. I read a book about how to recognise deficiency when I turned 40 years. I am 72 this year [November] and still walking with aid of sticks or rollator.
I dont have speech or swallowing problems but I dont think that is due to vitamins or exercise… just the luck of the draw as to which type of ataxia you have.
I run a local support group with help of Ataxia UK and together with this forum, it is my mainstay.
Keep posting and stay safe, Patsy x
Suzi,
JC doesn't want me to post a procedure for Spectracell blood test so I have posted as your friend so you can post directly
to my email website. If you want to know of this procedure you have to request it on my email account.
Thańk you all, my fellow Ataxians. You are awesome.