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Ataxia Support Network

Talk to Distant Daughter


#21

I’m in Oregon also and have had ataxia for 17 years. It does sound like you have hereditary Ataxia but without genetic testing AND/OR a diagnosis from a doctor who is knowledgeable about this rare disease you might not want to rule out other explanations/causes for your Ataxia including stroke. I cannot find doctors in Oregon who really know about this disease (except for 2) and would not rely on information from any of the doctors around who “think” they know something. I am currently undergoing DNA testing thru Dr Perlman’s office at UCLA, probably the best researcher in the country. I’ve had genetic testing–all negative, but this DNA testing is new–what they call Exome testing. My children are only mildly interested in knowing exactly what’s going on. Several doctors told me they may not want to know! Because I wished I’d known, I assumed they wanted to know, they may not. Ataxia hit me at age 50. The kind I have will not affect the walking in a young child. There is a kind that affects children but it doesn’t wait til age 50 to strike, and its not what our family has. After 17 years I’m finally getting medication that is helping but only because the “real experts” I’ve seen are pretty sure exactly what kind I have and knew this medication will likely work for my specific kind. It’s 4-amino pyridine. It is helping my balance. There’s nothing certain about this disease. Your granddaughter may have someting else going on. I would encourage you to see a specialist before jumping to conclusions about anything. If you can, go see dr perlman at UCLA. I would not rely on Kaiser doctors. In Portland, Dr Jeffrey Brown was the first to diagnose me and the Ataxia clinic in Chicago told me he was spot on. If you have nstagmus, see a neuroopthamologist, Dr Hills at OHSU–totally knowledgeable about SCA. The rest of the neurologists there are a waste of time. Its possible with some kinds to improve–I have. Learn as much as you can AND reach out to your daughter to see if you can ejoy your granddaughter more. She’s likely a busy parent and may feel you need to reach out–do. It’s totally worth it to have a relationship with a grandchild :sunglasses:.


#22

Thank you very much for your thoughtful reply. You sound very much like you know what you’re talking about. Unfortunately, I have no funds to travel or to see specialists. My brother has severe ataxic gate. With the lack of funds to do formalized testing, I have to rely on my Instinct that it is indeed hereditary. I’m going to add that I’ve had about four MRIs and they show shrinkage in the cerebellum. It started for me in 2005. Thanks again for your comment. Oh


#23

Oreberry,

I am indeed fortunate to get air miles from my children to travel to see top specialists. But the cost of the specialist is covered by Medicare. I’m 66 and have been on disability for 6 years. I have straight Medicare and a medigap policy about ($125 mo) to cover the other 20% not covered by medicare so I can go anywhere in the country. The big hospitals all take medicare and since SCA is so rare the ataxia clinics want to see anyone who has it. OHSU and others have financial assistance programs to cover what medicare won’t. UCLA is expecting to get Medicare to cover my Exome testing. Lets hope they succeed. Its expensive otherwise. Dr perlman seemed confident they could get it paid for. You are newly diagnosed and I know its all very frightening not knowing what to expect. It can be a slow moving disease and exercise seems to make a big difference. Stay as healthy as possible in every other way, and in time you will likely adapt to the physical changes. Good luck to you.

Mary Englund


#24

Thanks Mary. As far as exercise: I just got a European-style rollator
(offered by Drive Medical, bought on Jet for $165). It is outstanding. When
I bring it into my local Fred Myers I actually can walk pretty fast behind
it. Exercise! Love it. Brake wires are inside column.


#25

Oreberry, I just got an Evolution rollator-is the one you got better?


#26

I saw images of Evolution rollators and I don’t know which one you have. But I can speak about mine and I am very happy with it. Does your fold like an accordion when you lift the strap? It’s really very easy to collapse. Does yours have the wires for the brakes hidden in the column? The Nitro does. I love the big wheels too, very maneuverable.


#27

#28

It’s less expensive on Jet.


#29

What your son wrote is beautiful and a sheer testament to how blessed he feels to have you as a mother, with or without ataxia.

I feel exactly the same as your children. With a mother having been diagnosed with SCA a couple of years ago, I have umm-ed and ahh-ed about genetic testing but have decided against it as I am symptom free at present. But throughout the process of mum’s diagnosis, never did I feel anything but love towards her. I am so happy that the same can be said for your children.

Sending hugs your way. I am from the UK and I hope your husband is enjoying his trip to see his family! God bless.


#30

Thank you, Dressy6. I love him so much. He is always kind to me. I lucked out with that one. :slight_smile: as your mom with you.