# Support **URL:** https://forum.livingwithataxia.org/c/emotional-support/14.md [Latest](https://forum.livingwithataxia.org/latest.md) · [Categories](https://forum.livingwithataxia.org/categories.md) · [Tags](https://forum.livingwithataxia.org/tags.md) --- ## [About the Support category](https://forum.livingwithataxia.org/t/about-the-support-category/5057)
**Author:** [@ModSupport](https://forum.livingwithataxia.org/u/ModSupport)\ **Replies:** 0
Feeling down? Need to rant? This is the place. Let it rip, we are here to listen --- ## [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… --- ## [Hi my name is billy](https://forum.livingwithataxia.org/t/hi-my-name-is-billy/9241)
**Author:** [@MrWobbles](https://forum.livingwithataxia.org/u/MrWobbles)\ **Replies:** 7\ **Last updated:** [July 29, 2025, 11:07am UTC](https://forum.livingwithataxia.org/t/hi-my-name-is-billy/9241 "2025-07-29T11:07:31Z")
I got diagnosed about two years ago, and ever since then my mental and physical health have gone down hill. 24 years old and prescribed a cane, my doctor tells me i will eventually need a wheelchair for everything. I jus… --- ## [Please help](https://forum.livingwithataxia.org/t/please-help/9220)
**Author:** [@Hass](https://forum.livingwithataxia.org/u/Hass)\ **Replies:** 3\ **Last updated:** [June 25, 2025, 12:33pm UTC](https://forum.livingwithataxia.org/t/please-help/9220 "2025-06-25T12:33:14Z")
To cut the long story short I am a Moroccan / British man married to an English lady for 28 years. I have been diagnosed with SCA7 in 2004. It started affecting my movement in 2014 I gave up work. Now I am … --- ## [Is this site current?](https://forum.livingwithataxia.org/t/is-this-site-current/9210)
**Author:** [@aili](https://forum.livingwithataxia.org/u/aili)\ **Replies:** 7\ **Last updated:** [May 29, 2025, 1:05pm UTC](https://forum.livingwithataxia.org/t/is-this-site-current/9210 "2025-05-29T13:05:57Z")
Hi, I’ve looked around & I’ve done some reading on here, but the real reason I’m here is to gain some support / connect with others. I could use more community (the person who has Ataxia), as could my husband (the spou… --- ## [Your thoughts](https://forum.livingwithataxia.org/t/your-thoughts/9047)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 69\ **Last updated:** [February 4, 2025, 5:39pm UTC](https://forum.livingwithataxia.org/t/your-thoughts/9047 "2025-02-04T17:39:30Z")
Does Ataxia get to you sometimes? I know that it does me. Healthy folks just take their health for granted and I get jealous. --- ## [Ataxia from illness](https://forum.livingwithataxia.org/t/ataxia-from-illness/9115)
**Author:** [@Btuck](https://forum.livingwithataxia.org/u/Btuck)\ **Replies:** 5\ **Last updated:** [December 21, 2024, 3:37pm UTC](https://forum.livingwithataxia.org/t/ataxia-from-illness/9115 "2024-12-21T15:37:46Z")
Im seeing alot of people saying their ataxia was hereditary has anyone got it from an illness? Last October my body went into septic shock they never thought id live. I was put in a coma and stayed that way for two month… --- ## [Having a baby with friedreich ataxia](https://forum.livingwithataxia.org/t/having-a-baby-with-friedreich-ataxia/8940)
**Author:** [@Stephyt](https://forum.livingwithataxia.org/u/Stephyt)\ **Replies:** 6\ **Last updated:** [February 18, 2024, 2:35am UTC](https://forum.livingwithataxia.org/t/having-a-baby-with-friedreich-ataxia/8940 "2024-02-18T02:35:45Z")
Hi I’m 26 years old and live with friedreich ataxia, i am still able to walking using a Walker. I’m in a committed long term relationship and I’m starting to think about babies! I think my question is amid at ladies in t… --- ## [Employment](https://forum.livingwithataxia.org/t/employment/8971)
**Author:** [@Nakina\_G](https://forum.livingwithataxia.org/u/Nakina_G)\ **Replies:** 6\ **Last updated:** [February 6, 2024, 8:17pm UTC](https://forum.livingwithataxia.org/t/employment/8971 "2024-02-06T20:17:22Z")
Are there any suggestions for people with our disorder. I have cerebellum Ataxia --- ## [Feeling frustrated!](https://forum.livingwithataxia.org/t/feeling-frustrated/8925)
**Author:** [@Lindyluwho23](https://forum.livingwithataxia.org/u/Lindyluwho23)\ **Replies:** 7\ **Last updated:** [April 6, 2023, 7:57pm UTC](https://forum.livingwithataxia.org/t/feeling-frustrated/8925 "2023-04-06T19:57:32Z")
I am one who never gets down but everything has hit me at once. I found out recently that I have hyperthyroidism and the medication has made me more unstable than I already am I shake so bad right now and find it hard to… --- ## [I feel prejudged](https://forum.livingwithataxia.org/t/i-feel-prejudged/8472)
**Author:** [@Taymay](https://forum.livingwithataxia.org/u/Taymay)\ **Replies:** 21\ **Last updated:** [March 6, 2023, 3:20pm UTC](https://forum.livingwithataxia.org/t/i-feel-prejudged/8472 "2023-03-06T15:20:30Z")
Does anybody else feel alone going through this? Like not alone alone but people just don’t understand how hard day to day life is? I hate being in a wheelchair and I feel as though people always stare at me so I avoid p… --- ## [The future?](https://forum.livingwithataxia.org/t/the-future/6740)
**Author:** [@Dolo23](https://forum.livingwithataxia.org/u/Dolo23)\ **Replies:** 28\ **Last updated:** [January 23, 2023, 1:07pm UTC](https://forum.livingwithataxia.org/t/the-future/6740 "2023-01-23T13:07:47Z")
So I am in a 5 year study under Dr. LASPADA who is working on a treatment for SCA7. He has told me he plans on reversing what I have. My question is what do I do after I get treatment and be normal again? I have had to p… --- ## [You can always surprise yourself 🙂](https://forum.livingwithataxia.org/t/you-can-always-surprise-yourself/8402)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 9\ **Last updated:** [July 11, 2021, 6:18pm UTC](https://forum.livingwithataxia.org/t/you-can-always-surprise-yourself/8402 "2021-07-11T18:18:54Z")
:slightly\_smiling\_face: It’s been almost 10yrs since I last did it … yesterday I surprised myself (and family) by walking on a beach to the water’s edge… It was scary but it felt wonderful :heart: --- ## [Just Feeling Frustrated](https://forum.livingwithataxia.org/t/just-feeling-frustrated/8208)
**Author:** [@John\_D](https://forum.livingwithataxia.org/u/John_D)\ **Replies:** 13\ **Last updated:** [July 2, 2021, 10:38am UTC](https://forum.livingwithataxia.org/t/just-feeling-frustrated/8208 "2021-07-02T10:38:51Z")
First and foremost, I am NOT in danger of hurting myself or of doing anything stupid, so nobody should be concerned about that. The ‘life’ portion of my life is actually pretty good. I started seeing my wife 8 years ago… --- ## [Broken Ankle Blues](https://forum.livingwithataxia.org/t/broken-ankle-blues/8293)
**Author:** [@Mary1](https://forum.livingwithataxia.org/u/Mary1)\ **Replies:** 12\ **Last updated:** [March 6, 2021, 11:51pm UTC](https://forum.livingwithataxia.org/t/broken-ankle-blues/8293 "2021-03-06T23:51:39Z")
Well - People with Ataxia should not take the dog outside during a blizzard. I left my apartment about 9:30 pm during our first big blizzard late in January. I fell down and heard my ankle snap. I reached into my pocket … --- ## [Just got TERRIBLE news](https://forum.livingwithataxia.org/t/just-got-terrible-news/8233)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 11\ **Last updated:** [January 27, 2021, 8:35pm UTC](https://forum.livingwithataxia.org/t/just-got-terrible-news/8233 "2021-01-27T20:35:08Z")
My oldest and best friend just died from COVID-19. I am sick in the heart. Everyone, please be careful and follow ALL the guidelines. --- ## [Bad EA Episode](https://forum.livingwithataxia.org/t/bad-ea-episode/8152)
**Author:** [@unajenkins](https://forum.livingwithataxia.org/u/unajenkins)\ **Replies:** 5\ **Last updated:** [October 23, 2020, 9:22am UTC](https://forum.livingwithataxia.org/t/bad-ea-episode/8152 "2020-10-23T09:22:12Z")
I’m waiting for genetic results for Episodic Ataxia. I had my first bad episode in June this year. Up till now I’ve had good and bad days but today I can hardly walk. I haven’t yet bought any mobility aids so I’m bed bou… --- ## [Hi, my hame is Pat](https://forum.livingwithataxia.org/t/hi-my-hame-is-pat/7986)
**Author:** [@pmw](https://forum.livingwithataxia.org/u/pmw)\ **Replies:** 6\ **Last updated:** [October 14, 2020, 4:00pm UTC](https://forum.livingwithataxia.org/t/hi-my-hame-is-pat/7986 "2020-10-14T16:00:42Z")
I’m 70 and retired after 32 years with the VA as a Blind Rehabilitation Specialist. My Ataxia was diagnosed about a year ago after my Neurologist ordered an MRI. Specifically, it’s Cerebellar Ataxia from Dilantin toxicit… --- ## [Episodic ataxia type 2](https://forum.livingwithataxia.org/t/episodic-ataxia-type-2/8131)
**Author:** [@rooman94](https://forum.livingwithataxia.org/u/rooman94)\ **Replies:** 5\ **Last updated:** [October 5, 2020, 8:30am UTC](https://forum.livingwithataxia.org/t/episodic-ataxia-type-2/8131 "2020-10-05T08:30:46Z")
Hi, my name is Roman from Slovakia, I’m 26 years old and 9 years ago I was diagnosed with hereditary episodic ataxia type 2, CACN1A mutation with hemiplegic migraine. Who has found this diagnosis and what to give effect… --- ## [Need some help](https://forum.livingwithataxia.org/t/need-some-help/7842)
**Author:** [@Dolo23](https://forum.livingwithataxia.org/u/Dolo23)\ **Replies:** 9\ **Last updated:** [February 16, 2020, 2:50pm UTC](https://forum.livingwithataxia.org/t/need-some-help/7842 "2020-02-16T14:50:29Z")
I’m having a really hard time. It’s really bad I’m filled with alot of panic. So much u cant even sleep it keeps me awake and makes me shake. Alot. And also I have this blotch in my vision. It’s big and right there. In m… --- ## [Getting sick of this](https://forum.livingwithataxia.org/t/getting-sick-of-this/7809)
**Author:** [@John\_D](https://forum.livingwithataxia.org/u/John_D)\ **Replies:** 4\ **Last updated:** [January 24, 2020, 10:09am UTC](https://forum.livingwithataxia.org/t/getting-sick-of-this/7809 "2020-01-24T10:09:43Z")
I was born with this disorder. I actually got diagnosed 23 years ago. It’s been a challenge to deal with, but I’ve always managed to get through it with a smile on my face. I’ve actually been lucky enough to avoid seriou… --- ## [Girlfriend gone](https://forum.livingwithataxia.org/t/girlfriend-gone/7693)
**Author:** [@Pat\_G](https://forum.livingwithataxia.org/u/Pat_G)\ **Replies:** 5\ **Last updated:** [October 10, 2019, 10:52pm UTC](https://forum.livingwithataxia.org/t/girlfriend-gone/7693 "2019-10-10T22:52:06Z")
So I’ve been dumped after a two relationship with an amazing women. I knew we were in a funk and my anger and emotions got the best of me at times. I knew There were issues and I was working on that with conciling. I had… --- ## [Crisis/Help Line](https://forum.livingwithataxia.org/t/crisis-help-line/5500)
**Author:** [@ModSupport](https://forum.livingwithataxia.org/u/ModSupport)\ **Replies:** 2\ **Last updated:** [October 10, 2019, 12:02am UTC](https://forum.livingwithataxia.org/t/crisis-help-line/5500 "2019-10-10T00:02:16Z")
Are you in crisis, or maybe even feeling suicidal? Do need someone to listen and to support you right now? Take a deep breath, and find the helpline in your country: USA https://suicidepreventionlifeline.org/ Canada … --- ## [One letter can make/break your whole day](https://forum.livingwithataxia.org/t/one-letter-can-make-break-your-whole-day/7453)
**Author:** [@John\_D](https://forum.livingwithataxia.org/u/John_D)\ **Replies:** 3\ **Last updated:** [September 29, 2019, 6:00pm UTC](https://forum.livingwithataxia.org/t/one-letter-can-make-break-your-whole-day/7453 "2019-09-29T18:00:50Z")
Some days, it’s ‘WTG!’, but on days like today it is very much ‘WTF!’. --- ## [Sporadic Cerebellar Ataxia, Just Diagnosed and Still Wondering What to Do](https://forum.livingwithataxia.org/t/sporadic-cerebellar-ataxia-just-diagnosed-and-still-wondering-what-to-do/7673)
**Author:** [@RawrRawrLadyPerson](https://forum.livingwithataxia.org/u/RawrRawrLadyPerson)\ **Replies:** 13\ **Last updated:** [September 28, 2019, 2:07am UTC](https://forum.livingwithataxia.org/t/sporadic-cerebellar-ataxia-just-diagnosed-and-still-wondering-what-to-do/7673 "2019-09-28T02:07:06Z")
Hi There I got a diagnosis finally of “Sporadic Cerebellar Ataxia”, and I felt a bit conflicted. The Neurologist said that insurance basically won’t touch the testing for SCA’s unless I can find family members with symp… --- ## [Need more surgery](https://forum.livingwithataxia.org/t/need-more-surgery/6105)
**Author:** [@Geri](https://forum.livingwithataxia.org/u/Geri)\ **Replies:** 7\ **Last updated:** [September 25, 2019, 7:45pm UTC](https://forum.livingwithataxia.org/t/need-more-surgery/6105 "2019-09-25T19:45:07Z")
Good morning all. I will be off-line for a month or two. I need more surgery to clean out a cyst in my spinal cord. This will be surgery number six. I will be at HUP in Philadelphia PA. My surgeon is excellent but he do… --- ## [Earning Income](https://forum.livingwithataxia.org/t/earning-income/7514)
**Author:** [@bearfan1968](https://forum.livingwithataxia.org/u/bearfan1968)\ **Replies:** 9\ **Last updated:** [July 21, 2019, 10:24pm UTC](https://forum.livingwithataxia.org/t/earning-income/7514 "2019-07-21T22:24:12Z")
Many times I have called lawyers to help get Social Security and always getting turned down. I apparently haven’t acquired enough work credits. I have been disabled from Cerebral Ataxia, came aware of it quite a few year… --- ## [Four-letter word for Ataxia](https://forum.livingwithataxia.org/t/four-letter-word-for-ataxia/7464)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 6\ **Last updated:** [May 29, 2019, 1:24pm UTC](https://forum.livingwithataxia.org/t/four-letter-word-for-ataxia/7464 "2019-05-29T13:24:34Z")
Feeling a little down right now. Not gonna do anything stupid. I can think of other four-letter words to relate to Ataxia but since this is a family place, “HATE” is the best that I can come up with right now. However… --- ## [I just don't understand](https://forum.livingwithataxia.org/t/i-just-dont-understand/7090)
**Author:** [@Gizmo512](https://forum.livingwithataxia.org/u/Gizmo512)\ **Replies:** 6\ **Last updated:** [December 9, 2018, 12:43pm UTC](https://forum.livingwithataxia.org/t/i-just-dont-understand/7090 "2018-12-09T12:43:02Z")
It has been awhile since been to this site. I probably shouldn’t have left. I have been dealing with something with my life partner that I just don’t get. We have been together for 27 years, and with the exception of … [Next page](https://forum.livingwithataxia.org/c/emotional-support/14.md?page=1)