Hi, I'm doing my high school graduation project on ataxia, since I myself am diagnosed with cerebellar ataxia. I wanted to include in my presentation other peoples stories. Could anyone please help me out?
Hi, I'm Doug Smith living in Bristol, England. I am 83 and have Sensory Ataxia, which only started 6 years ago.
Have a peek at my Profile Information. Hope it may help you with your project. If you want any more info - please let me know. Cheers.
Hi Navygirlfriend!
I don’t know what type of SCA I have, symptoms have been present for many years prior
to correct diagnosis. Originally misdiagnosed as Epilepsy, and with separate Eye Condition.
If any of this is useful let me know. xB
hello I’m Prudhvi and my age is 23. Years
I’m from India
I’m diagnosed with Friedrich. Ataxia at 7th Year
I have been using many medicines to fine out a cure.
Even ur project may lead a cure.
My best wishes and all the best for your project.
For more details please be free to contact me.
My best wishes… 
Hi Navy girlfriend. I have SCA6. You can have a look at my profile if it helps I have a strange history so any more info let me know. Good luck x
Dear Navygirlfriend, I think it's great that you are doing a project on ataxia for school...,kudos to you! I was diagnosed at age 49, 10 years ago with Sporadic Cerebellar Ataxia (non-hereditary/unknown cause), although I had small symptoms starting about 8 years before diagnosis. It affects my gait/balance (I use a cane when I leave my home to prevent falls, but am able to walk, carefully, in my home without it), dexterity (writing/printing/fine motor skills), speech (slurred) and swallowing (sometimes coughing/choking). I had genetic testing for the known recessive types of ataxia, which was negative. I may have genetic testing for the known dominant types at some point. No one in my family, as far back as we know, has/had ataxia except me. I consider myself "special"...,ha! My ataxia has progressed (59 years young now), albeit slowly. I find exercising for strength and balance, as well as keeping as active as possible (walking with trekking poles) is the only thing that helps me. Also, I try to eat as healthy as possible (lots of veggies and fruit). Ataxia is very frustrating and challenging, but it's my "normal". Therefore, I try to have a positive attitude about it. I do feel sad about it at times, but it passes quickly, as I am truly blessed! Feel free to use any information you find helpful and/or contact me for more...,my best to you! ;o)
Navy ngirlfriend, you are free to use any of my information you can but my case is undiagnosed or of undetermined cause. I am 71 years old and in good health except for the ataxia, especially considering my age. My ataxia became pronounced in Jan, 2012 but I had some slight symptoms for probably a year or year and a half before then. I went from using a cane just to balance in Jan last year to needing a walker in Oct,2012 and seem worse now. About Jan last year I realized I couldn't write though I still crochet and do other fine motor things. My speech seems to be affecdted more and more. It was not affected at first except maybe when I was very tired. My vision has suffered in that the new glasses I got early this year don't always seem to focus right. I know of no one else in the family who had ataxia, but just realized that especially on my dad's dad's side the generations are about 40 years apart and there are no cousins,etc,- even distant ones- that we are in touch with. You might want to look into this weighted vest thingy and include it in your research--it looks so promising to me. Sorry to ramble on, but this is my story, for what it's worth to you. Good luck on you paper and in life.
FYI: The weighted vest thingy that granny h mentioned is a BalanceWear vest by Motion Therapeutics (look on their website). It was invented by a physical therapist, Cindy Gibson-Horn ) lives and works in San Francisco, California). It's a lightweight adjustable black vest, that zips up the front, and has weights velcroed inside, for an individuals specific needs. I have the vest and only have 2 1/4 LBS weight inside, in different places for my needs. It is VERY helpful for my gait/balance. I even write better when wearing it...,what's up with that?...,ha! There's also a waist belt insert, if need be, as well as a plastic wedge insert that supports the back. ;o)
Thank you everyone so much! You've all really helped.
You can use my story.. I went to my primary Dr. complaining I was falling twice a month for aprox 3 years.( I always had an excuse,) I was 53 and started dragging my feet. She sent me to a neurologist who diagnosed me through testing. He confirmed through an MR my cerebellum was shrinking. Tried DNA, X-link Vitamin b,, brain tumor or damage, and alcoholism all ruled out. Sent me to a specialist who ordered genetic testing, tried amantadine and buspar-they didn't help but gave me side effects, went back to my neuro was afraid to try Chantix. I was dx in 2008 and went on disability in 2011. I tried Rilutek Which lasted a year, Now I'm on clonazepam. I haven't had that shakey feeling (feels like shivering on inside and turns into fingers and wrist twitching while rersting ) and I have not acted out my dreams or let out a blood curtling scream in my sleep. One dr said if it was hereditary 4 out of my 12 siblings (all older but 1 and 2 deceased) would have it and none do. my parents are deceased but did not have it either. I have Pure Cerebellar Ataxia of Unknown causes. I now use a rollator and am waiting for my balance vest
known causes
granny h said:
Navy ngirlfriend, you are free to use any of my information you can but my case is undiagnosed or of undetermined cause. I am 71 years old and in good health except for the ataxia, especially considering my age. My ataxia became pronounced in Jan, 2012 but I had some slight symptoms for probably a year or year and a half before then. I went from using a cane just to balance in Jan last year to needing a walker in Oct,2012 and seem worse now. About Jan last year I realized I couldn't write though I still crochet and do other fine motor things. My speech seems to be affecdted more and more. It was not affected at first except maybe when I was very tired. My vision has suffered in that the new glasses I got early this year don't always seem to focus right. I know of no one else in the family who had ataxia, but just realized that especially on my dad's dad's side the generations are about 40 years apart and there are no cousins,etc,- even distant ones- that we are in touch with. You might want to look into this weighted vest thingy and include it in your research--it looks so promising to me. Sorry to ramble on, but this is my story, for what it's worth to you. Good luck on you paper and in life.
Oh Yes, I forgot aboout the dreams. I started in the fall 2011 talking and hollering in my sleep-- This after 40+ years of no sleep talking. I did it as a child and through college age. Now it is more of an acting out of dreams and talking in them. So far, no swallowing problems which I understand are common among ataxians. I have suffered from constipation since Jan 2012, and dr. just last month admitted it may be ataxia related.
Hi,
I am 26 and from Tyne and Wear, England. I was diagnosed with Cerebellar Ataxia around the age of 20. I drive, horse ride (my horse is named Melody), own a Guinea pig haha, have a 6 month Rottweiler puppy who is training to be my assistance dog and have been to University, where I recently graduated in the summer. While at University I completed my undergrad project on Ataxia and other neurological conditions etc.
If you want to talk to me or get more information feel free to get in touch! I am on facebook Taryn L Cotton, message or I can email. Hope that helps x
Way to go, Taryn! You're truly an inspiration! ;o)
Hi,
You can use my story, and thank you for doing this project, any attention brought to this disease can only lead to further treatments and possible someday a cure. I haven't been positively diagnosed yet, but it's looking more and more like that is what I have as time goes by. When I was 34 I started dragging my leg and was seeing double and very weak, and was tested for MS. Back then (in 1982) they didn't have MRIs so I had a lumbar puncture, Evoked Potentials lab test and EMG/NCV. It was decided that I didn't have MS. I continued to have the symptoms off and on for 2 years. When I 52 I couldn't stand without leaning/holding onto something. I swayed all over from the trunk, and I had blood test that showed very low B12 level - it was 71. It is supposed to be over 200 - some doctors say it should be between 400-500. The nerve damage from the low level caused permanent nerve damage, so I have some nerve problems like numbness and tingling, and coordination problems leftover from that. In 2006 I had another episode. I was exposed to pesticides and herbicides sprayed on the lawn at the apartment where I lived. I had a raw scratchy throat, and instantly lost coordination and became very weak. At the same time I was having flattening of my spinal cord in my neck, and was going through the workup for having my cervical spine fused. That also causes trouble walking from Myelopathy.
I had the Anterior Discectomy with fusion of C5/6 and C6/7 a few months later. My walking got better for several months, then Ataxia returned.
In 2011, I had a Fluzone H1N1 Flu Shot, and a severe neurological reaction to it. That was followed 2.5 months later by being exposed 3 different time to Ant Pesticide sprayed at my apartment in apt. below me. I instantly got incoordination and severe weakness, and needed a walker to get around my apt. I used a scooter to grocery shop, and had to pull myself up each step to my apt. for months. It gradually improved over 2 years and again it was off and on (Usually more on than off). I was sent for an Allergy workup, and 4 months later to University of MIchigan for a workup there. I had a MRI of my lumbar spine, and EMG/NCV. I was told I either had a Demyelinating Disease (type not specified) or Hereditary Episodic Ataxia. Again it took 2 yrs. to partially recover. It's back again just 3 years later. I had a Corneal Transplant in April 2014. The Prednisone Eye Drops caused immune weakness, and my Zoster (Shingles) flared back up without lesions - I just had the pain and tingling in my ear, side of face, temple and top of head. Shortly after that the Ataxia started back up. I am having severe spells that last about 4 hrs. where I have severe weakness, numbness/tingling all over, sometimes one of my legs goes totally numb for several hours. I am going to start PT soon, and have a followup appt. at University of Michigan Neurologist I saw before in early September. Sorry this is so long - it's been a complex history. I also have had eye movement disorder this time around. I am using Gabapentin 100mg (2 capsules 3x a day) - that helps with eye movement but doesn't help the Ataxia at all. I wish you luck with your project, and good luck with your Cerebellar Ataxia. Maybe someday they will know how to treat this better, or come up with a cure.
Best Wishes,
Nancy J