Hi John,

I’ve got a lot of support from the people on this site. If I didn’t have my online friends I would definately have a harder road to travel. I’m glad you liked my suggestions, I like to think I’m giving something back.


John Gurhy said:

Hi Sara

Glad you got it and thanks for the supportive suggestions Hope you are ok dont be a stranger.

Hi Sara,

I'm 58 and was diagnosed at 56. I, too, was always very active and now I find learning how to live well with this is challenging. I work full time, but just this week I am cutting back to 4 days - I'm too tired all the time.

My Grandmother had this, so I kinda knew what to look for. A long time ago I went ahead and identified Drs "just in case" So my diagnosis was easy (luckily) and getting to a supportive doctor was easy too. So I have had no physician problems. Even my GP is supportive.

As far as acceptance, I think I am relatively accepting on my own behalf but I think that's because I spend so much energy trying to get other people to accept it, MY acceptance is a forgone conclusion.

New things to replace some of my old things? I'm still going to my Toastmasters group - I figure it will help with my slurred speech. I'm trying to exercise more but that was never my thing. I found I really like water aerobics, and I can't fall very far! I signed up for a Learn-to-row program in the fall because it will be great exercise that is done sitting down. I'm trying to find a sailing program for physically challenged people.

I've finally located a hippotherapy program. I love horses and I used to ride a little. It's part of occupational therapy and I like riding so I am eager to start that. You may find a similar barn near you.

I've applied for a balance therapy dog but they warned me it will take years to reach the top of that list.

And I've started a "Vision board" . Its a large cork board hung in my office for me to pin pictures to for inspiration. Of course, there's Pinterest on the computer too.

And I can still crochet without too much difficulty. I know that one day I won't be able to, so I am crocheting baby blankets for my grandchildren NOW to save for later (I don't even have any grandchildren yet).

I wish I could travel but everyone I'd like to travel with is too busy to go with me. My husband would like to but always "next year" but I worry that when next year comes, I won't want to or I won't be able to enjoy things. I have thought about finding a travel organization that I could go with.

Hope this helps! I'd like more ideas from everyone else too!


Fascinating to read through this thread which was started so many years ago. I dont remember writing the posts I contributed!

Pleased to say that I now feel I have accepted my CA and coping much better than I could ever have imagined.


My question to all of you is:
1. How long did it take you to accept this disease? Finally Diagnosed Sep 2013, still trying to deal with it.

(Take Zoloft at night and helps with stress, anxiety and or depression) I don't like taking meds but it does help.

2. How long before you were properly diagnosed? Years --- 20 plus++

3. Have you ever been treated badly by the medical community? Yes, I was made to feel like I was the problem and there was not a problem. I have SCA unknown cause.

4. What new hobbies have you taken up? I have taken up working on family trees and spending time with those I grandkids are my world.

I am going to go as long as I can. You can't give up and give in. Take each day as it comes and do what you can. I am working on this everyday. Hang in there!

1) I believe that I am where I am by GOD'S design

2) don't have a clear Neuro gave it a name (senile chorea)

But admits it's just a.'name..I believe he thinks it's in my head

3) YES..yes..Yes!! Western medicine is..just what they are TOLD!!

4) my jerky movements.Are worse than..ever..

I was an Interior.Decorator..

I have all I can do to get to the bathroom..

But I do have a new tablet..and.I can use a stylus to..type

I've met a new man..who..I'm going to month..

Travel ing handicapped..but.I CAN do ALL..things through...Christ..who strengthens me!!

Hang in Sara..we are here..for you!!

Hi Sara, After reading your first paragraph I thought of my own story and how it is so simular. in 2006 I was having some back trouble and also some energy and walking issues. I went through several doctors, mri's and ct's. I then was sent to a neurologist who did a EMG/NCV test on me and a lot of blood work. He told me I had peripheral neuropathy because of a severe B12 definecy. Had lots of shots then sublingual pills and I slowly started getting better. Then was sent to another doctor (Endrocronolagist) and he did some blood tests and found that I had vitamin D defiencey. after taking these vitamins I felt like myself and did fine for about 3 years then My blood pressure went crazy high, I went to the ER (I worked at the hospital) and they immediately gave me nitro to get my blood pressure down. Well I felt real woozy and then flat lined, code blue. I was dead for about 2 minutes. They finally got me going and had more tests (heart cath.) I seemed to be ok then came back to have a stress test and the same thing happened again. My cardiologist found that I had an AV bock Which keeps the signals to the heart muscles work with each other. I had a pacemaker put in. Ok, so after all that, I'm doing real good again and work is going well. I got a horrible flu in January 2013. I noticed in March of 2013 I was having trouble walking and had fallen several times. I went back to the neurologist and he did the same EMG/NCV tesst on my and found that I was significantly worse. So bad he set me up to go to the university of colorado neuromuscular dept. They did blood tests my B12 was fine My vit. D was fine They Did a EMG/NCV test and found I was even worse than 2 months before when my original neurologist did them It was also in my arms and fingers. They also found I had no reflexes. When my primary doctor found out the results she immediately took me off of work for a month. 11 days into that I was driven to the ER for a very serious myoclonus attack. Jerking and tremoring with almost no control. My primary Doctor sent me to yet another Neurologist who look at all the tests CT's MRI's and blood tests and told me I have SCA (Spinocerebellar Ataxia) We did the genetics tests and I have SCA type 14. Now here we are a year and a few months later, I was a pro guitarist, Engineer and now I can not walk, Have trouble talking, My eyesight is now 3 times worse, I get around in a electric scooter. Fortunetly my was was a Certified Nurses Aid and takes care of me as I can not take care of my self properly. I went through the denial stage when I was first diagnosted with B12 deff. but after that it was more like, what's next. The only anger I had really wasn't the disease but my ex-wife trying to drain my savings and benefits. I use the computer more and program some when I'm not shaking. We have 3 dogs that keep us busy. The people at my church (catholic) look after me and check up on me as well. I'll be taking a lot of recorded tracks and putting them together on the computer to finish a final album. I'm always drain physically but emotions go up and down a lot. I take meds for depression now. At least with disability, my wife and I can do a lot more together.

Hi Sara. I have hereditary ataxia. I was diagnosed in 2007. I have learned to live with it. I have found a good doctor who is working with my voice, and teaching my husband how to help me with it, and my balance. Sometimes I use a cane for it. Because my voice is clearing, I m learning how to speak Russian and Spanish. None of my children or grandchildren have it, thank God. So, like you, I thank Jesus that I am still alive and doing good. I can still garden and play with my grandchildren. And that is enough.

1. about six months

2. 25 years

4. Joined a motorcycle association and ride in a sidecar

I first showed symtoms of hereditary sca6 15 years ago, I could pay or wait a year, I paid and was seen the same week.

We decided to move to France,a decision not regretted!

New hobbies:-bird watching, astronomy & photography.

best wishes Fiona

Hi Sara

My name is fahareen hudda age 45. I live in uganda and when I was 13 I was reserve champion of kenya in horse riding. I too was brilliant at public speaking debating, toast masters and MUN. When I was 36 I was diagnosed with SCA 2 a form of ataxia which causes emotional and movement imbalance. No one here could help except put me on Zoloft, Prozac . I stopped writing, dancing, wearing heals, drank much less, could not catch a ball, I felt stupid. I danced like a spastic. Lat year my cousin suggested to go to India for physical and occupational therapy. Wow I can write now, I can walk down stairs without holding the side. I can dance a little, but the main thing is to strengthen your core, body, hands and legs. I still ride but no shows, I can’t scribe perfectly but I have accepted what I have. I found a physiotherapist in uganda who does a one on one with me 3 times a week. She makes the exercises harder every week. I feel better. I did not use a wheel chair this time when I travelled to kenya. The Physio therapist limits my day to 2 things. Monday horse ride and shopping
Tuesday flower shop and Physio
Wednesday gym and bridge
Thursday horse ride and Physio
Friday horse ride and flower shop
Sat Physio and home excersise
Sun home excersise and walk the dog

I own a flower shop which I go to twice a week, I must nap an hour a day or I. Start shaking and mix my white wine with soda water.
Keep strong

All the best fahareen

Answer to your questions.

  1. Not fully accepted as I am scared it will dash hope
    2.Diagnosis was over a year…"I went private but finally got diagnosis on NHS
  2. Never been treated badly and I was 3 months in ITU with respiratory infection.
  3. Started to paint but have to learn how to steady my hands.
    The condition is hard and the goal keeps moving.
    I have to hope.
    I was diagnosed with idiopathic cerebellar ataxia and while I was in hospital the neurologist there said I should think about MSA but my neurologist thinks otherwise.


My primary physician told me once I accept my SCA the better it would be, there is some truth to that. I pray each day to accept the things I cannot change,

1) I have accepted it but that doesn't mean it's easy

2) I started noticing something was wrong in 2010 and I was diagnosed 11/28/2012

3) My neurologist is very helpful and accommodating, He is open for suggestion and anytime I wants to see him he is okay with that

4) I don not have any new hobbies, I was a workaholic and now that I am working only seasonal I love to read and watch TV, I would like to do puzzles and make exercise my new hobby

Thanks Sara