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Ataxia Support Network

Mother to a son with ataxia

#1

Hi, I am a mother to a 15 year old son with Ataxia. Looking for any kids out there and or parents in my situation ?

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#2

Hi​:blush: If you don’t get a good response immediately, it’s likely because the majority of people are 'casual users’:slightly_smiling_face: So, there’s no reason why you shouldn’t repost on the Forum at regular intervals​:slightly_smiling_face:

A good place to contact others is at a local Ataxia Support Group🙂 Look on the National Ataxia Foundation website www.ataxia.org where there’s a state by state list🙂 Even if a group isn’t exactly local, they may be able to put you in touch with someone who ‘fits the bill’ re your query🤔

Your son will at some point be 16🙂 www.ataxia.org.uk have a specific 16-30 group🙂 Have a look and see what you think🤔 On www.ataxia.org.uk scroll down the home page and click on Ataxia 16-30 :slightly_smiling_face: Also, on our home page here, scroll down until you come to Blog, and click. You may see an archive post which relates to your enquiry :blush:xB

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#3

:blush:I just saw this on Facebook.

Log onto it and click on BLOG, it’s aimed specifically at children with rare conditions😊xB

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#4

I know this may be unhelpful. Due to the lateness and the situation. But I am an 18-year-old and a senior in high school with Ataxia.

I might be somewhat unhelpful as my ataxia is derived from a brain tumor that was located in the cerebellum vs. an inherited disease. Most of what I suffer from is an ataxic right side of my body (specifically my hand) sometimes the left side likes to join the fun too. I also have balance and coordination issues, no one knows if these come from the ataxia, the tumor, or treatments for it.

I would love to share some of my coping mechanisms as well as what I’ve done to make it more manageable if you want.

-Jakob

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#5

:slightly_smiling_face:It really doesn’t matter how someone ‘got’ ataxia, we all know what it’s like to experience the frustrating, seemingly nonsensical and often mindnumbingly challenging symptoms, we’re all in the same boat :wink: xB

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#6

Hi!

Where do you live ? Trey will be 18 this year. I would love to here any advice you may have. Trey was diagnosed in 2010 still Unknown what is causing it.

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#7

Please consider having the proper blood test for gluten ataxia not celiac.

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#8

We did cane back fine

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#9

I live in Salt Lake City, Utah. One of the things that helped me most was playing with Legos. I still do this a lot. I think its also important to exercise. Specifically, it is important to exercise outside. One of the things to keep in mind (as I’m sure you’ve figured out) is that it takes a ridiculous amount of times to be able to complete these things on a normal level.

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