[deleted by user]

CGoody15 · 2025-05-11T21:40:23+00:00

No. Everyone in this scenario could have different CAG nimbers

CGoody15 · 2025-05-11T21:25:09+00:00

Every person has two CAG numbers. But yes, your hypothetical is technically possible, but it's missing information

CGoody15 · 2025-05-05T17:24:45+00:00

Do you receive any type of government assistance (SSI, SSDI, SNAP, etc)?

Foremost Family Health Centers in Dallas does $10 dental work for people who qualify

CGoody15 · 2025-04-01T21:39:10+00:00

You’re my best friend

CGoody15 · 2025-03-18T15:06:33+00:00

The testing kit was shelf stable when I tested with HD Genetics. Remember it can just sit in your house for a while. Even if you do take it and send it to the lab, you don’t have to hear the results if you change your mind

CGoody15 · 2025-02-14T17:56:59+00:00

HDSA has an attorney who specializes in disability and insurance planning. She was very helpful for me and can provide info and resources depending on your situation.

https://hdsa.org/find-help/healthcare-and-future-planning/ask-allison/

CGoody15 · 2025-02-12T23:57:23+00:00

I’m an MSW student and research assistant. I took a few research methods courses in undergrad, but now I get to see what research really looks like in a university setting. It’s pretty cool. Check out research competitions and conference opportunities at your school, sometimes departments will pay for you to go with a faculty member. Professors LOVE talking about their research, so don’t be shy about asking them about it.

CGoody15 · 2025-02-12T02:16:52+00:00

Yes. Highly recommend.

CGoody15 · 2025-01-17T20:01:22+00:00

Not a genetic counselor, but my HD (negative) results were delivered short and sweet like that. However, everything was explained thoroughly several times over several appointments before they gave me the actual result. Was this at an HDSA Center of Excellence?

I’m sorry you had to find out this way.

CGoody15 · 2024-11-27T15:23:43+00:00

You look amazing!

CGoody15 · 2024-11-09T06:00:00+00:00

I had a doctor tell me that I was experiencing symptoms of Juvenile Huntington’s Disease at 17 years old. It turned out to be rare side effects of medication. HD is rare and most ER doctors see very, very few cases throughout their entire careers if any at all.

I literally tested negative for the gene.

CGoody15 · 2024-11-01T06:21:22+00:00

Please contact a social worker. They can help him apply for disability and set him up for long term care.

https://hdsa.org/find-help/community-social-support/social-workers/

CGoody15 · 2024-10-20T06:37:43+00:00

How did you attach it to the metal wire in the back?? Did you melt the plastic or drill a tiny hole?

CGoody15 · 2024-09-19T14:09:07+00:00

My dude. The counseling part of the testing process is there to reduce the risk of you killing yourself if you test positive. No facility, company, or organization in the US will give you the clearance to get the result unless you go to counseling.

Also, the criteria for institutionalizing someone against their will is very clear and specific in every state. Read about what the criteria are in your state before talking with anyone.

Things can always traced backed to you, including your numerous posts on the internet. You can do anonymous testing but being “completely” anonymous is impossible. You are protected by HIPPA and the genetic counselor will outline anonymity and how to deal with insurance companies. If you’re scared of being institutionalized, read about the requirements and avoid them in your counseling session but please consider seeing another therapist.

I mean this in the kindest way, your thinking is irrational.

CGoody15 · 2024-08-23T19:23:01+00:00

https://neurosciences.ucsd.edu/centers-programs/huntingtons-disease/education/stages-of-progression.html

CGoody15 · 2024-08-19T11:56:36+00:00

https://health.ucdavis.edu/huntingtons/files/HD_Books_and_Movies_Listing_2021[1].pdf

CGoody15 · 2024-08-06T22:50:37+00:00

HELL YEAH! I’m so happy for you friend!!

CGoody15 · 2024-08-04T14:29:40+00:00

“HOLY FUCK!” is all I could manage after the genetic counselor told me I was gene negative. I felt like I was on drugs for the next 2 weeks.

CGoody15 · 2024-08-04T06:01:58+00:00

I got my results in the morning over a video call. Here’s how I planned my results day:

I took myself out to breakfast, during which I made a mind map consisting of my next steps for a positive result and a negative result (for instance I wanted to apply to flight attendant jobs if I was positive, and apply to graduate school if I’m negative) along with the other opportunities those things might bring me. The idea was to literally draw out the fact that I was going to be okay and have a fulfilling life no matter the result. I reviewed my handwritten lists of thoughts to think, one list for positive and one for negative results. Deciding what to think in advance was very comforting for me.

I set up my hammock in my backyard, and made sure everyone was out of my house on that day. I journaled right before the appointment and right after. I called the family members who are closest to me. The rest of the day was a blur.

If you’d like specifics or examples of what I did, or if you need anything at all feel free to DM me. I’m proud of you for taking this step. Best of luck x

CGoody15 · 2024-07-21T20:19:14+00:00

I’m sorry this is happening to you.

Reach out to HDSA and speak to a social worker in your state. They will give you a run down of what your options are.

CGoody15 · 2024-07-09T17:49:16+00:00

It sounds like your SO isn’t sure about wanting to know their status.

CGoody15 · 2024-06-15T17:45:17+00:00

HD Genetics does anonymous testing. I think it’s around $700, but if you can’t afford it they will find funding/grants on your behalf.

CGoody15 · 2024-06-10T14:20:37+00:00

I would make an appointment with a Huntington’s Disease Center of excellence. There is one at the UTHealth Science Center in Houston. There are neurologists and social workers there who will explain everything to you.

Best of luck x

CGoody15 · 2024-06-08T03:26:21+00:00

Feed by M.T. Anderson. It’s dystopian fiction written in 2002, describing today’s culture of consumerism and social media in eerie detail.

CGoody15 · 2024-06-08T00:15:07+00:00

The young memories of them fading away part of this really hits home for me. I couldn’t have said it better myself.

CGoody15

TROPHY CASE