# \#tips **URL:** https://forum.livingwithataxia.org/tag/tips/4.md [Latest](https://forum.livingwithataxia.org/latest.md) · [Categories](https://forum.livingwithataxia.org/categories.md) · [Tags](https://forum.livingwithataxia.org/tags.md) --- ## [Daily survival](https://forum.livingwithataxia.org/t/daily-survival/9034)
**Author:** [@Saboath](https://forum.livingwithataxia.org/u/Saboath)\ **Replies:** 3\ **Last updated:** [January 30, 2024, 11:18am UTC](https://forum.livingwithataxia.org/t/daily-survival/9034 "2024-01-30T11:18:00Z")
Call your childhood “ imaginary “ friend , very useful nowMy living quarters --- ## [Newly Diagnosed and unsure of the furture](https://forum.livingwithataxia.org/t/newly-diagnosed-and-unsure-of-the-furture/9021)
**Author:** [@Jisw16](https://forum.livingwithataxia.org/u/Jisw16)\ **Replies:** 2\ **Last updated:** [December 9, 2023, 10:27pm UTC](https://forum.livingwithataxia.org/t/newly-diagnosed-and-unsure-of-the-furture/9021 "2023-12-09T22:27:27Z")
After a long 6 years of being put through test after test with no results. The day finally came that i recieved an official diagnosis… Spinocerebellar ataxia type 8 Not sure what to think and cant find too much informa… --- ## [A little help here :)](https://forum.livingwithataxia.org/t/a-little-help-here/8553)
**Author:** [@anon54518290](https://forum.livingwithataxia.org/u/anon54518290)\ **Replies:** 1\ **Last updated:** [February 24, 2022, 10:43am UTC](https://forum.livingwithataxia.org/t/a-little-help-here/8553 "2022-02-24T10:43:56Z")
Hi y’all. I have a non-profit called Hope For Ataxia whose mission is to spread Ataxia awareness globally. Anyhow, we n a blog series called Faces of Ataxia. Here, we share stories of Ataxians, caregivers, friends and re… --- ## [Weighted Vest](https://forum.livingwithataxia.org/t/weighted-vest/1834)
**Author:** [@Wobblymum](https://forum.livingwithataxia.org/u/Wobblymum)\ **Replies:** 14\ **Last updated:** [April 28, 2021, 9:10am UTC](https://forum.livingwithataxia.org/t/weighted-vest/1834 "2021-04-28T09:10:28Z")
I have just returned from San Francisco where I saw Cindy Gibson-Horn, a physio, who fitted me with my weighted vest. After a few tests without the jacket she then put it on me and immediately I was walking straighter an… --- ## [What to expect from your GP or Neurologist](https://forum.livingwithataxia.org/t/what-to-expect-from-your-gp-or-neurologist/8339)
**Author:** [@katebey](https://forum.livingwithataxia.org/u/katebey)\ **Replies:** 14\ **Last updated:** [April 14, 2021, 4:07pm UTC](https://forum.livingwithataxia.org/t/what-to-expect-from-your-gp-or-neurologist/8339 "2021-04-14T16:07:34Z")
Hello everyone, This is my first post. I was diagnosed with Late Onset Cerebellar Ataxia in Feb 21 by a Neurologist in a short appointment after waiting a year for one. I was referred for blood tests and an MRI. My ne… --- ## [Outside or inside?](https://forum.livingwithataxia.org/t/outside-or-inside/8009)
**Author:** [@cross\_eyes](https://forum.livingwithataxia.org/u/cross_eyes)\ **Replies:** 46\ **Last updated:** [January 17, 2021, 12:39pm UTC](https://forum.livingwithataxia.org/t/outside-or-inside/8009 "2021-01-17T12:39:22Z")
I’ve never seen anything about this but I’m 10 times worse outside than inside. These days, during coronavirus, I rarely go out but I did yesterday and noticed a distinct down-turn in my walking abilities which is only m… --- ## [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… --- ## [Members in India](https://forum.livingwithataxia.org/t/members-in-india/7663)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 0\ **Last updated:** [September 18, 2019, 1:34pm UTC](https://forum.livingwithataxia.org/t/members-in-india/7663 "2019-09-18T13:34:54Z")
http://www.swavlambancard.gov.in/ :slightly\_smiling\_face: A helpful link to any member living in India. --- ## [Just my opinion](https://forum.livingwithataxia.org/t/just-my-opinion/7973)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 2\ **Last updated:** [June 27, 2020, 1:53am UTC](https://forum.livingwithataxia.org/t/just-my-opinion/7973 "2020-06-27T01:53:22Z")
I’ve always pushed exercises on you folks. One thing I’ve never presented is that it’s my opinion that if you exercise to the point of creating a sweat you will also psychologically feel better. You won’t dwell on your … --- ## [Mygene2.org](https://forum.livingwithataxia.org/t/mygene2-org/7967)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 0\ **Last updated:** [June 18, 2020, 6:10pm UTC](https://forum.livingwithataxia.org/t/mygene2-org/7967 "2020-06-18T18:10:14Z")
What is MyGene2? MyGene2 is a portal through which families with rare genetic conditions who are interested in sharing their health and genetic information can connect with other families, clinicians, and researchers. Th… --- ## [Tips on ‘stretching food](https://forum.livingwithataxia.org/t/tips-on-stretching-food/7886)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 0\ **Last updated:** [April 5, 2020, 4:50pm UTC](https://forum.livingwithataxia.org/t/tips-on-stretching-food/7886 "2020-04-05T16:50:19Z")
https://www.which.co.uk/news/2020/03/10-ways-which-customers-are-making-their-food-go-further/? --- ## [Disability Benefit (US)](https://forum.livingwithataxia.org/t/disability-benefit-us/7960)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 1\ **Last updated:** [June 16, 2020, 4:51pm UTC](https://forum.livingwithataxia.org/t/disability-benefit-us/7960 "2020-06-16T16:51:41Z")
https://blog.ssa.gov/things-to-think-about-before-applying-for-disability-benefits/?utm\_medium=email&utm\_source=govdelivery --- ## [What's the point in coming here](https://forum.livingwithataxia.org/t/whats-the-point-in-coming-here/7928)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 6\ **Last updated:** [June 7, 2020, 11:58am UTC](https://forum.livingwithataxia.org/t/whats-the-point-in-coming-here/7928 "2020-06-07T11:58:26Z")
… if nothing can be done anyway? If that’s your thinking, then your thinking needs some adjustment. Sure, medically might not happen YET but psychologically might be just as important for now. You can vent here becaus… --- ## [Please consider this](https://forum.livingwithataxia.org/t/please-consider-this/7908)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 3\ **Last updated:** [May 26, 2020, 4:53pm UTC](https://forum.livingwithataxia.org/t/please-consider-this/7908 "2020-05-26T16:53:16Z")
All of us are staying indoors like the medical community suggested - right? However, staying indoors does not mean just hanging out and watching TV. It is very important to exercise and to keep your muscles and cardio … --- ## [Help give peace of mind with technology](https://forum.livingwithataxia.org/t/help-give-peace-of-mind-with-technology/7919)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 1\ **Last updated:** [May 20, 2020, 4:11pm UTC](https://forum.livingwithataxia.org/t/help-give-peace-of-mind-with-technology/7919 "2020-05-20T16:11:40Z")
FALL DETECTORS We know that medical alert systems aren’t new to the scene, but the technology surrounding them is constantly improving. The problem with the old systems was that they only worked when a person in distress… --- ## [Wearing a facemask for Covid-19](https://forum.livingwithataxia.org/t/wearing-a-facemask-for-covid-19/7916)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 2\ **Last updated:** [May 14, 2020, 9:42pm UTC](https://forum.livingwithataxia.org/t/wearing-a-facemask-for-covid-19/7916 "2020-05-14T21:42:37Z")
https://www.which.co.uk/reviews/face-mask/article/face-masks-where-to-buy-them-and-how-to-make-your-own --- ## [Helpful advice about freezing food](https://forum.livingwithataxia.org/t/helpful-advice-about-freezing-food/7885)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 5\ **Last updated:** [April 11, 2020, 11:14am UTC](https://forum.livingwithataxia.org/t/helpful-advice-about-freezing-food/7885 "2020-04-11T11:14:40Z")
--- ## [Qualifying for Social Security benefits](https://forum.livingwithataxia.org/t/qualifying-for-social-security-benefits/7844)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 11\ **Last updated:** [March 14, 2020, 11:31am UTC](https://forum.livingwithataxia.org/t/qualifying-for-social-security-benefits/7844 "2020-03-14T11:31:06Z")
--- ## [A survey into work prospects when diagnosed with ataxia](https://forum.livingwithataxia.org/t/a-survey-into-work-prospects-when-diagnosed-with-ataxia/7854)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 2\ **Last updated:** [March 13, 2020, 12:26pm UTC](https://forum.livingwithataxia.org/t/a-survey-into-work-prospects-when-diagnosed-with-ataxia/7854 "2020-03-13T12:26:25Z")
--- ## [11 Exercises for Ataxia Patients - National Ataxia Foundation](https://forum.livingwithataxia.org/t/11-exercises-for-ataxia-patients-national-ataxia-foundation/7790)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 12\ **Last updated:** [March 2, 2020, 10:50pm UTC](https://forum.livingwithataxia.org/t/11-exercises-for-ataxia-patients-national-ataxia-foundation/7790 "2020-03-02T22:50:26Z")
--- ## [Tanganil 500mg](https://forum.livingwithataxia.org/t/tanganil-500mg/7238)
**Author:** [@henry.n](https://forum.livingwithataxia.org/u/henry.n)\ **Replies:** 18\ **Last updated:** [January 26, 2020, 11:06am UTC](https://forum.livingwithataxia.org/t/tanganil-500mg/7238 "2020-01-26T11:06:58Z")
Hello everybody, I would like to know if anybody has any additional information on where to purchase this item? I only found this French company called Pierre Fabre: pierre-fabre.com/en/healthcare-medical-products-conta… --- ## [Disastrous 24 hour bug](https://forum.livingwithataxia.org/t/disastrous-24-hour-bug/7757)
**Author:** [@Scamom](https://forum.livingwithataxia.org/u/Scamom)\ **Replies:** 3\ **Last updated:** [December 10, 2019, 2:49pm UTC](https://forum.livingwithataxia.org/t/disastrous-24-hour-bug/7757 "2019-12-10T14:49:02Z")
A few days ago, my five year old got a stomach illness. Throwing up for about a day, and then sporadic diarrhea since then. He dealt with it pretty well. The day after he got it, I started feeling a little gross. One ho… --- ## [Deficiency of Vit B12 can lead to Sensory Ataxia](https://forum.livingwithataxia.org/t/deficiency-of-vit-b12-can-lead-to-sensory-ataxia/7703)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 4\ **Last updated:** [October 21, 2019, 3:07pm UTC](https://forum.livingwithataxia.org/t/deficiency-of-vit-b12-can-lead-to-sensory-ataxia/7703 "2019-10-21T15:07:24Z")
Apologies for the way this has posted, I did try editing. \[B12 Deficiency and Unsteadiness Timothy C. Hain, MD Page last modified: September 12, 2017 Vitamin B12 deficiency is common in the population over 80 (about 1… --- ## [🙂 A variety of interesting reads](https://forum.livingwithataxia.org/t/a-variety-of-interesting-reads/7669)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 1\ **Last updated:** [September 24, 2019, 11:58pm UTC](https://forum.livingwithataxia.org/t/a-variety-of-interesting-reads/7669 "2019-09-24T23:58:23Z")
\[https://www.thebimblers.com/\] --- ## [Zinger Mobility Chair](https://forum.livingwithataxia.org/t/zinger-mobility-chair/7101)
**Author:** [@ModSupport](https://forum.livingwithataxia.org/u/ModSupport)\ **Replies:** 9\ **Last updated:** [September 18, 2019, 1:08pm UTC](https://forum.livingwithataxia.org/t/zinger-mobility-chair/7101 "2019-09-18T13:08:11Z")
I know nothing about this and have never used it, saw an ad for it and immediately thought of this group: 888-828-3989 azurelle --- ## [Lanyard scheme for Hidden Disabilities](https://forum.livingwithataxia.org/t/lanyard-scheme-for-hidden-disabilities/7636)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 2\ **Last updated:** [September 9, 2019, 2:58pm UTC](https://forum.livingwithataxia.org/t/lanyard-scheme-for-hidden-disabilities/7636 "2019-09-09T14:58:50Z")
:slightly\_smiling\_face:Available in the UK. https://inews.co.uk/news/health/sunflower-lanyard-scheme-hidden-disability-explained-meaning-how-get-one/ --- ## [Explaining Dystonia](https://forum.livingwithataxia.org/t/explaining-dystonia/7629)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 14\ **Last updated:** [September 5, 2019, 4:21pm UTC](https://forum.livingwithataxia.org/t/explaining-dystonia/7629 "2019-09-05T16:21:55Z")
--- ## [A new mobility device](https://forum.livingwithataxia.org/t/a-new-mobility-device/7445)
**Author:** [@Sharon\_3sca](https://forum.livingwithataxia.org/u/Sharon_3sca)\ **Replies:** 17\ **Last updated:** [August 21, 2019, 6:47pm UTC](https://forum.livingwithataxia.org/t/a-new-mobility-device/7445 "2019-08-21T18:47:32Z")
Hi everybody! I have visited a website that has lots of information about a walker-type device, but so much better! : https://www.mylifeglider.com I’m hoping to get one soon! I am going through the process of getting p… --- ## [Supplement](https://forum.livingwithataxia.org/t/supplement/7616)
**Author:** [@JanH](https://forum.livingwithataxia.org/u/JanH)\ **Replies:** 3\ **Last updated:** [August 20, 2019, 1:42pm UTC](https://forum.livingwithataxia.org/t/supplement/7616 "2019-08-20T13:42:33Z")
Anyone here tried Amino acid-dL-leucine? I read it can decrease ataxia scores by 20% Also says improvements in gait and speech.