A no-nonsense, no medical jargon, no everything is awesome, totally relatable to your life look at ATAXIA.

My name is Jonas Cepkauskas, and I was diagnosed with an unknown SCA (spino-cerebellar ataxia) about 1995. That was before social media, commercial DNA testing, and even before everyone had cell phones. Yes, it was a different time, although not pre-historic.

Some types are fairly mild, some are aggressive and devastating, and many are somewhere in the middle.

I inform you of this not to toot my horn, or because I want a hearty handshake and a pat on the back, but because it is just fact, and is meaningful to most people.

I do what I do because like many of you, I was overwhelmed with frustration at the lack of info when I was first thrown into this bizarre world of ataxia, and wished for some sanity.

 


Trying to make sense of what seemed impossible, I decided  to start and still run today The Chicago Ataxia Suppport Group. In the past 20 years, I have seen many people with all types of ataxia come and go.

After a while, I found that about 14 people in my family were affected. I was the first of my family in the USA to pursue medical help.

My diagnosis was confirmed by Dr. Christopher Gomez, professor and chair of the neurololgy department at The University of Chicago, who was at The  University of Minnesota at the time. He runs The Ataxia Center there, and is well known and renowned among the highly specialized ataxia medical community, and is a foremost researcher in the field, doing guest speaking all over the globe.

A while back, he moved to Chicago, and I reconnected, and started The Fight Ataxia Project, a support and information network. I started to do events,  fundraisers and seminar/workshops, and did some guest speaking at some ataxia events.

Knowing and working with Dr. Gomez greatly reduced my learning curve. Along with other efforts and experiences, it might be safe to say that I know a little about ataxia.

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Karen K. -A concise and easy to understand  (no medical jargon) explanation of ataxia. There are also tips, exercises, and hacks learned through personal experience. As everyone's situation is unique, some things will be helpful, some not. Overall, very informative. It makes you think about how you can handle and improe your own situation....
Debbie L. Great job! Every neurologists office needs a copy in their waiting room. Can you tell I've been bit by "the awareness bug?"!!!

UNEDITED REVIEWS

Pennie H. The book is great. . .it describes the things that those of us with ataxia go through. I loaned my book to someone that just found out that he had ataxia and did not know what to expect. He described the book as "ataxia 101" and told his daughter abo ut the book. She found and bought it. She and her fiancee are now organizing a fund raiser in Topeka, KS. It is amazing what a simple gesture like loaning a book can do. I recommend this book!!

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Kelly H. The book is Awesome!!
Rebecca J. Great book!
Lori G . Jonas, your book is excellent. I also have had this for over 20 years. I was initially diagnosed with OPCA. The NAF publication was put out about 15 years ago. I see Jeremy Schmahmann at Mass General.

Hi Jonas,
I just finished reading your book "Life with Ataxia". You are awesome for writing it! Thank you!
My husband has Ataxia #17 and is becoming more impacted with it. It is extremely difficult for him to talk about. I appreciate your book because it helps me better understand what he is going through. You also give great tips! I am going to buy more copies of your book and give to family and friends. Others have a really hard time understanding what is happening to my husband and I think your book will help. My husband's brother also has ataxia and his wife would like a copy of your book. I was telling her how great it was to read and I am going to send her a copy too!
Again, thank you. I think you are helping a lot of people. I know it must have taken some courage to write.
Sincerely, Marete

Your book is really terrific! I’m the latest in my family to be diagnosed and it’s been a huge learning curve. I appreciate your insight and humor, your practical, commonsense approach. Your inside scoop is invaluable! I’ll definitely be buying more copies.
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