# Latest **URL:** https://forum.livingwithataxia.org/latest.md [Latest](https://forum.livingwithataxia.org/latest.md) · [Categories](https://forum.livingwithataxia.org/categories.md) · [Tags](https://forum.livingwithataxia.org/tags.md) --- ## [Welcome To Living With Ataxia Support Network](https://forum.livingwithataxia.org/t/welcome-to-living-with-ataxia-support-network/5208)
**Author:** [@ModSupport](https://forum.livingwithataxia.org/u/ModSupport)\ **Replies:** 1\ **Last updated:** [October 10, 2016, 1:20pm UTC](https://forum.livingwithataxia.org/t/welcome-to-living-with-ataxia-support-network/5208 "2016-10-10T13:20:10Z")
Were you a member of our old Ataxia Support Network site? Simply LOG IN with your old user name and click on "Forgot password". We will send you a link to claim your old profile. First time visitor? Please go to our Ma… --- ## [Somnolence - slipping away in the daytime](https://forum.livingwithataxia.org/t/somnolence-slipping-away-in-the-daytime/9387)
**Author:** [@manjad](https://forum.livingwithataxia.org/u/manjad)\ **Replies:** 8\ **Last updated:** [September 23, 2026, 10:29am UTC](https://forum.livingwithataxia.org/t/somnolence-slipping-away-in-the-daytime/9387 "2026-09-23T10:29:40Z")
I thought I had brain fog, but it is more that my brain shuts off completely and I fall asleep in the afternoon. There is no fatigue. It’s unrelated to my sleep at night (usually 8-9 hours). I have ADHD as well as cerebe… --- ## [Sound familiar?](https://forum.livingwithataxia.org/t/sound-familiar/9384)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 1\ **Last updated:** [September 21, 2026, 9:38am UTC](https://forum.livingwithataxia.org/t/sound-familiar/9384 "2026-09-21T09:38:41Z")
Whenever the weather is bad I find that my balance is worse. What about you? I know that barometric pressure affects muscles and joints. --- ## [Door opening?](https://forum.livingwithataxia.org/t/door-opening/9383)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 1\ **Last updated:** [September 21, 2026, 9:25am UTC](https://forum.livingwithataxia.org/t/door-opening/9383 "2026-09-21T09:25:04Z")
--- ## [Received today via email](https://forum.livingwithataxia.org/t/received-today-via-email/9392)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 0\ **Last updated:** [September 13, 2026, 10:17pm UTC](https://forum.livingwithataxia.org/t/received-today-via-email/9392 "2026-09-13T22:17:57Z")
It’s been noticed that in some folks taking weight prescriptions are low in vitamin B1. Being low in B1 can lead to balance problems, lack of coordination and eye problems. Always consult your MD before taking anythin… --- ## [Can't Diagnose](https://forum.livingwithataxia.org/t/cant-diagnose/9380)
**Author:** [@Derek828](https://forum.livingwithataxia.org/u/Derek828)\ **Replies:** 14\ **Last updated:** [August 6, 2026, 8:16pm UTC](https://forum.livingwithataxia.org/t/cant-diagnose/9380 "2026-08-06T20:16:16Z")
Anyone else here do genetic testing, an MRI, an EMG, and consistently meet with their neurologist, only for them to tell you that they cannot give you a diagnosis, or is this just me? Mind you I have had progressive low… --- ## [Navigating ataxia](https://forum.livingwithataxia.org/t/navigating-ataxia/9377)
**Author:** [@KrazyKat](https://forum.livingwithataxia.org/u/KrazyKat)\ **Replies:** 2\ **Last updated:** [July 31, 2026, 6:15pm UTC](https://forum.livingwithataxia.org/t/navigating-ataxia/9377 "2026-07-31T18:15:56Z")
Hi,you can call me Charlie! Not my real name but keeping private info anynomous. I was born a micro preemie at 24 weeks but my parents never told me anything. Now,I’m out of the house and after calling a genetics program… --- ## [What do you do?](https://forum.livingwithataxia.org/t/what-do-you-do/9374)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 3\ **Last updated:** [July 14, 2026, 2:13pm UTC](https://forum.livingwithataxia.org/t/what-do-you-do/9374 "2026-07-14T14:13:25Z")
Do you do anything that makes your Ataxia easier to handle? Why not share your suggestions with your fellow members? As for me, after over 50 years with this Ataxia, I’ve learned to walk with my eyes downward looking a… --- ## [Don't wait until you"re thirsty](https://forum.livingwithataxia.org/t/dont-wait-until-you-re-thirsty/9371)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 1\ **Last updated:** [June 28, 2026, 6:49pm UTC](https://forum.livingwithataxia.org/t/dont-wait-until-you-re-thirsty/9371 "2026-06-28T18:49:46Z")
As we get older, our bodies may not tell us we are thirsty as quickly as they used to. That means hydration can sneak up, especially during warm summer months. Drinking enough water helps keep your body cool, supports … --- ## [Healthy habits for your brain](https://forum.livingwithataxia.org/t/healthy-habits-for-your-brain/9370)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 0\ **Last updated:** [June 4, 2026, 10:07pm UTC](https://forum.livingwithataxia.org/t/healthy-habits-for-your-brain/9370 "2026-06-04T22:07:40Z")
--- ## [Handwriting solution?](https://forum.livingwithataxia.org/t/handwriting-solution/2701)
**Author:** [@Jan1](https://forum.livingwithataxia.org/u/Jan1)\ **Replies:** 20\ **Last updated:** [May 22, 2026, 4:37pm UTC](https://forum.livingwithataxia.org/t/handwriting-solution/2701 "2026-05-22T16:37:31Z")
So I have problems with handwriting, fill in a form, label post envelope... I thing that a solution may be a gadget which look like a stamp but has small keyboard on itself and small display. You write a word, on it pre… --- ## [Can the right footwear really help](https://forum.livingwithataxia.org/t/can-the-right-footwear-really-help/9363)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 0\ **Last updated:** [May 18, 2026, 4:17pm UTC](https://forum.livingwithataxia.org/t/can-the-right-footwear-really-help/9363 "2026-05-18T16:17:49Z")
Could the right shoes or braces improve balance with Ataxia? Join our upcoming webinar to find out! Dr. Jocelyn Curry will break down how foot health, foot drop, braces, and proper shoes can make a difference. Register… --- ## [Assisted Technology](https://forum.livingwithataxia.org/t/assisted-technology/9362)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 0\ **Last updated:** [May 18, 2026, 4:13pm UTC](https://forum.livingwithataxia.org/t/assisted-technology/9362 "2026-05-18T16:13:43Z")
:slightly\_smiling\_face:It’s likely that at some point many of us will find the need to use ‘an assistive device to communicate’. This link..includes a number of suggestions…other than ‘eye gaze technology. --- ## [Podiatry help with Ataxia balance webinar](https://forum.livingwithataxia.org/t/podiatry-help-with-ataxia-balance-webinar/9361)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 0\ **Last updated:** [May 18, 2026, 3:31pm UTC](https://forum.livingwithataxia.org/t/podiatry-help-with-ataxia-balance-webinar/9361 "2026-05-18T15:31:28Z")
--- ## [Falls are dangerous](https://forum.livingwithataxia.org/t/falls-are-dangerous/9345)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 8\ **Last updated:** [May 9, 2026, 8:40pm UTC](https://forum.livingwithataxia.org/t/falls-are-dangerous/9345 "2026-05-09T20:40:18Z")
Because of our physical problems we have to be very aware of our situations at ALL times. Recently I made a sudden quick turn about a month ago and I wound up falling and banging into a wall Fortunately I didn’t break… --- ## [🙂 Calendar of Events-Meetings during May 2026……all are welcome](https://forum.livingwithataxia.org/t/calendar-of-events-meetings-during-may-2026-all-are-welcome/9360)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 0\ **Last updated:** [May 7, 2026, 4:02pm UTC](https://forum.livingwithataxia.org/t/calendar-of-events-meetings-during-may-2026-all-are-welcome/9360 "2026-05-07T16:02:33Z")
:slightly\_smiling\_face: Information from the National Ataxia Foundation Click on the Event to find out how to register. --- ## [Hurting and afraid](https://forum.livingwithataxia.org/t/hurting-and-afraid/2702)
**Author:** [@Carlous\_B](https://forum.livingwithataxia.org/u/Carlous_B)\ **Replies:** 27\ **Last updated:** [April 21, 2026, 2:47pm UTC](https://forum.livingwithataxia.org/t/hurting-and-afraid/2702 "2026-04-21T14:47:44Z")
Is anyone afraid ofalling steps or unlevel surfaces. Do anyone have severe pain walking and body is always tense up tight as if you are afraid you may fall. What are people doing to help? --- ## [Falling backwards](https://forum.livingwithataxia.org/t/falling-backwards/1299)
**Author:** [@Lassie-Elena](https://forum.livingwithataxia.org/u/Lassie-Elena)\ **Replies:** 34\ **Last updated:** [April 21, 2026, 12:35pm UTC](https://forum.livingwithataxia.org/t/falling-backwards/1299 "2026-04-21T12:35:37Z")
has anyone of you experienced falling backwards? For me it was the first thing that happened with me after damage to my cerebellum. it is like a magnet is pulling me back from my waist to my head. --- ## [Falling over](https://forum.livingwithataxia.org/t/falling-over/2724)
**Author:** [@Linda1](https://forum.livingwithataxia.org/u/Linda1)\ **Replies:** 32\ **Last updated:** [April 21, 2026, 12:31pm UTC](https://forum.livingwithataxia.org/t/falling-over/2724 "2026-04-21T12:31:50Z")
Hi all I fell over this morning, nothing unusual about that. Today I smashed into the side of a drawer. I have just come home from the Dr with stitches in my head, nothing serious but still annoying. Do you find when you… --- ## [🙂 Ataxia UK Glasgow Roadshow](https://forum.livingwithataxia.org/t/ataxia-uk-glasgow-roadshow/9356)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 0\ **Last updated:** [April 21, 2026, 12:19pm UTC](https://forum.livingwithataxia.org/t/ataxia-uk-glasgow-roadshow/9356 "2026-04-21T12:19:53Z")
--- ## [Insomnia age your brain faster?](https://forum.livingwithataxia.org/t/insomnia-age-your-brain-faster/9353)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 0\ **Last updated:** [April 15, 2026, 9:16pm UTC](https://forum.livingwithataxia.org/t/insomnia-age-your-brain-faster/9353 "2026-04-15T21:16:07Z")
--- ## [Becoming a 'dead weight', a rag doll](https://forum.livingwithataxia.org/t/becoming-a-dead-weight-a-rag-doll/9346)
**Author:** [@manjad](https://forum.livingwithataxia.org/u/manjad)\ **Replies:** 12\ **Last updated:** [April 6, 2026, 9:53am UTC](https://forum.livingwithataxia.org/t/becoming-a-dead-weight-a-rag-doll/9346 "2026-04-06T09:53:31Z")
I’m wondering if any of you had this too. Or have an explanation? A few times now I’ve had this. While suffering from something else - be it fever or kidney problems - I experienced a sudden, complete loss of muscle ton… --- ## [🌟Please give a warm welcome to our new community members! 🌟](https://forum.livingwithataxia.org/t/please-give-a-warm-welcome-to-our-new-community-members/9307)
**Author:** [@rmcn](https://forum.livingwithataxia.org/u/rmcn)\ **Replies:** 6\ **Last updated:** [April 5, 2026, 5:48pm UTC](https://forum.livingwithataxia.org/t/please-give-a-warm-welcome-to-our-new-community-members/9307 "2026-04-05T17:48:26Z")
Hello everybody, I hope you’re all doing well! It’s finally starting to feel like fall around here. I’ve had to throw on a jacket for my morning runs this week. The weather is not quite cold, but it’s definitely not t-sh… --- ## [National Ataxia Foundation Conference 2026](https://forum.livingwithataxia.org/t/national-ataxia-foundation-conference-2026/9350)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 0\ **Last updated:** [April 5, 2026, 5:23pm UTC](https://forum.livingwithataxia.org/t/national-ataxia-foundation-conference-2026/9350 "2026-04-05T17:23:55Z")
Four leading pharmaceutical companies. One conversation shaping what’s next in Ataxia. Join us at AAC for a panel featuring leaders from Sarepta Therapeutics, Lexeo Therapeutics, Vico Therapeutics, and Solaxa, bringing … --- ## [Constipation - Ataxia or not?](https://forum.livingwithataxia.org/t/constipation-ataxia-or-not/6618)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 113\ **Last updated:** [March 26, 2026, 8:01pm UTC](https://forum.livingwithataxia.org/t/constipation-ataxia-or-not/6618 "2026-03-26T20:01:42Z")
I apologize in starting this distasteful thread but I would like to know your thoughts. I’ve had problems since my Ataxia has gotten “worse”. I now take Psyillium for bulk every day - once a day \[rounded teaspoon\] - wh… --- ## [Arizona Dry Climate](https://forum.livingwithataxia.org/t/arizona-dry-climate/9053)
**Author:** [@Sfields1](https://forum.livingwithataxia.org/u/Sfields1)\ **Replies:** 6\ **Last updated:** [March 16, 2026, 5:29am UTC](https://forum.livingwithataxia.org/t/arizona-dry-climate/9053 "2026-03-16T05:29:43Z")
Hello I have Ataxia Telangiactasia and I currently live in Southeast Michigan I was wondering if anyone found that living in a dry climate such as Arizona helped ease symptoms? --- ## [The Vestibular System…in addition to Ataxia](https://forum.livingwithataxia.org/t/the-vestibular-system-in-addition-to-ataxia/9341)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 0\ **Last updated:** [February 21, 2026, 2:22pm UTC](https://forum.livingwithataxia.org/t/the-vestibular-system-in-addition-to-ataxia/9341 "2026-02-21T14:22:11Z")
:slightly\_smiling\_face: I cope with these symptoms….a diagnosis of ataxia doesn’t just refer to mobility issues. --- ## [18-24 ataxia support group | Facebook](https://forum.livingwithataxia.org/t/18-24-ataxia-support-group-facebook/9337)
**Author:** [@Breanna](https://forum.livingwithataxia.org/u/Breanna)\ **Replies:** 0\ **Last updated:** [February 4, 2026, 1:53am UTC](https://forum.livingwithataxia.org/t/18-24-ataxia-support-group-facebook/9337 "2026-02-04T01:53:09Z")
If you are older, please consider joining The Dominoes Support Group for Adults 25-35 Living with Ataxia or Age 30-55 with Ataxia Support Group --- ## [Visually Induced Dizziness……..’Supermarket Syndrome’](https://forum.livingwithataxia.org/t/visually-induced-dizziness-supermarket-syndrome/9318)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 5\ **Last updated:** [January 11, 2026, 11:06am UTC](https://forum.livingwithataxia.org/t/visually-induced-dizziness-supermarket-syndrome/9318 "2026-01-11T11:06:35Z")
SUPERMARKET SYNDROME" Do you dread going to the grocery store because it makes you feel bad? The maze of tall shelves, the bright lights, patterns on the floor, the overwhelming selection of items, bending down or turni… --- ## [Happy New Year](https://forum.livingwithataxia.org/t/happy-new-year/9330)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 1\ **Last updated:** [January 11, 2026, 10:58am UTC](https://forum.livingwithataxia.org/t/happy-new-year/9330 "2026-01-11T10:58:44Z")
Happy New Year to all! :+1: [Next page](https://forum.livingwithataxia.org/latest.md?page=1)