# Need to vent? **URL:** \ **Category:** General\ **Created:** [September 13, 2020, 3:02pm UTC](https://forum.livingwithataxia.org/t/need-to-vent/8103 "2020-09-13T15:02:03Z")\ **Posts on this page:** 13\ **Page:** 1
**Author:** ![Chas521](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/chas521/32/5683_2.png) [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Post date:** [September 13, 2020, 3:02pm UTC](https://forum.livingwithataxia.org/t/need-to-vent/8103/1 "2020-09-13T15:02:03Z")
I think that venting is a great way to release stress. Even though you might duplicate a prior post doesn’t mean that you shouldn’t express a post. So, lets see what you have to say. ---
**Author:** ![Brandon53](https://avatars.discourse-cdn.com/v4/letter/b/dec6dc/32.png) [@Brandon53](https://forum.livingwithataxia.org/u/Brandon53)\ **Post date:** [September 15, 2020, 3:00am UTC](https://forum.livingwithataxia.org/t/need-to-vent/8103/2 "2020-09-15T03:00:25Z")
If this is to stimulate some dialogue within the members then I have a question. Are you one to vent your frustrations at God (if you believe in such a thing), people, animals, or inanimate objects? My venting is usually directed at myself but God, I hate to say, has heard a few misguided moments during frustration of trying to walk.“Whats the point here Jesus, because this is getting me no where except closer to falling”\> that’s my standard vent at him. Of course time spent on my feet is potentially more rewarding than sitting down, except to rest. ---
**Author:** ![Mari88](https://avatars.discourse-cdn.com/v4/letter/m/e56c9b/32.png) [@Mari88](https://forum.livingwithataxia.org/u/Mari88)\ **Post date:** [September 16, 2020, 12:04am UTC](https://forum.livingwithataxia.org/t/need-to-vent/8103/3 "2020-09-16T00:04:57Z")
I have been waiting for two weeks just to know if any labs nearby can do the genetic testing. I ended up calling directly Athena Labs in the US and sent my paperwork. The genetic testing cost almost 10K but am waiting if I qualify for any economic assistance. Its frustrating but will keep waiting. ---
**Author:** ![Shoaib](https://avatars.discourse-cdn.com/v4/letter/s/c5a1d2/32.png) [@Shoaib](https://forum.livingwithataxia.org/u/Shoaib)\ **Post date:** [September 16, 2020, 12:05pm UTC](https://forum.livingwithataxia.org/t/need-to-vent/8103/4 "2020-09-16T12:05:20Z")
I hear you. Most of the genetic testings costs more than 10K unless insurance pays for it. ---
**Author:** ![Mari88](https://avatars.discourse-cdn.com/v4/letter/m/e56c9b/32.png) [@Mari88](https://forum.livingwithataxia.org/u/Mari88)\ **Post date:** [September 16, 2020, 11:05pm UTC](https://forum.livingwithataxia.org/t/need-to-vent/8103/5 "2020-09-16T23:05:23Z")
Have you done any for yourself? If so, Did it take long for results? ---
**Author:** ![Shoaib](https://avatars.discourse-cdn.com/v4/letter/s/c5a1d2/32.png) [@Shoaib](https://forum.livingwithataxia.org/u/Shoaib)\ **Post date:** [September 16, 2020, 11:20pm UTC](https://forum.livingwithataxia.org/t/need-to-vent/8103/6 "2020-09-16T23:20:19Z")
Yes I did but not until Medicare paid for it. I got the results in about 2 weeks ---
**Author:** ![Mari88](https://avatars.discourse-cdn.com/v4/letter/m/e56c9b/32.png) [@Mari88](https://forum.livingwithataxia.org/u/Mari88)\ **Post date:** [September 16, 2020, 11:50pm UTC](https://forum.livingwithataxia.org/t/need-to-vent/8103/7 "2020-09-16T23:50:58Z")
Oh wow…It’s a reasonable time. Well my Neurologist suspected my Dad had FA but he passed away before we could do any type of testing. I am 39 and my neurologist confirmed a few months ago I had ataxia but suggested the genetic testing for prognosis purpose and further symptoms. I am having problems with coordination, at times slurred speech and other symptoms. So hopefully I get that lab response sometime soon. ---
**Author:** ![Shoaib](https://avatars.discourse-cdn.com/v4/letter/s/c5a1d2/32.png) [@Shoaib](https://forum.livingwithataxia.org/u/Shoaib)\ **Post date:** [September 17, 2020, 12:54am UTC](https://forum.livingwithataxia.org/t/need-to-vent/8103/8 "2020-09-17T00:54:49Z")
I am sorry about your dad. My dad had SCA 6 Although he was never diagnosed and passed away 20 years ago. Everyone thought he had stroke. Me and my sister has it. But I was the only one that got genetic testings. My sister lives outside USA. At present I am seeing neurologist at Johns Hopkins. I am 69 and forced retired due to my disability. I am still waiting for a breakthrough for all genetic diseases. ---
**Author:** ![Mari88](https://avatars.discourse-cdn.com/v4/letter/m/e56c9b/32.png) [@Mari88](https://forum.livingwithataxia.org/u/Mari88)\ **Post date:** [September 17, 2020, 11:15pm UTC](https://forum.livingwithataxia.org/t/need-to-vent/8103/9 "2020-09-17T23:15:23Z")
What age were you when first signs of symptoms appeared? ---
**Author:** ![Shoaib](https://avatars.discourse-cdn.com/v4/letter/s/c5a1d2/32.png) [@Shoaib](https://forum.livingwithataxia.org/u/Shoaib)\ **Post date:** [September 17, 2020, 11:52pm UTC](https://forum.livingwithataxia.org/t/need-to-vent/8103/10 "2020-09-17T23:52:35Z")
Looking back, by age 55 I noticed something was not right. But it was not until I was 60 I was forced to retire from my work. After I got Medicare through disability, I was able to get genetic testing around age 62. With high hopes, I tried BHV-4157 (an experimental drug) without any improvements. It’s progressive and I don’t know if there would be a breakthrough in genetic engineering before it’s too late. ---
**Author:** ![Mari88](https://avatars.discourse-cdn.com/v4/letter/m/e56c9b/32.png) [@Mari88](https://forum.livingwithataxia.org/u/Mari88)\ **Post date:** [September 18, 2020, 1:08am UTC](https://forum.livingwithataxia.org/t/need-to-vent/8103/11 "2020-09-18T01:08:48Z")
Ok…Don’t get your hopes down. We hope something appears soon… ---
**Author:** ![Shoaib](https://avatars.discourse-cdn.com/v4/letter/s/c5a1d2/32.png) [@Shoaib](https://forum.livingwithataxia.org/u/Shoaib)\ **Post date:** [September 19, 2020, 11:15am UTC](https://forum.livingwithataxia.org/t/need-to-vent/8103/12 "2020-09-19T11:15:22Z")
> **[Gene therapy corrects the cardiac effects of Friedreich's ataxia](https://www.eurekalert.org/pub_releases/2020-09/mali-gtc091820.php?fbclid=IwAR1CsrfbnVZ9yf44r5bx7LdmcfH0b1SHBIDUVbVi7dpfvOSg2WPUDyX2fm0)** > > Gene therapy was successfully used to overcome the cardiac effects of Freidreich's ataxia (FA) in a mouse model of the disease ---
**Author:** ![Scamom](https://avatars.discourse-cdn.com/v4/letter/s/aca169/32.png) [@Scamom](https://forum.livingwithataxia.org/u/Scamom)\ **Post date:** [October 13, 2020, 12:16pm UTC](https://forum.livingwithataxia.org/t/need-to-vent/8103/13 "2020-10-13T12:16:51Z")
I had Athena labs done years ago and it was half that. That sucks.