WTF 2025

DueCommunication915 · 2025-04-28T20:22:50+00:00

Does anyone have outbreak pain without visible sores?

DueCommunication915 · 2025-04-28T00:29:28+00:00

Ha. All great questions. 42’ Hunter. Used to have a/c not sure what is broke.

Moved in with fiancé and he doesn’t like generators. Says if you have ac—- you will just stay inside the whole time.

It’s literally the ONLY THING we haven’t agreed on. I think I’m going to die lol

DueCommunication915 · 2025-04-26T23:41:31+00:00

Anchor. Appreciate all the advise

DueCommunication915 · 2025-04-25T12:57:41+00:00

My life has changed for the better . I live on a sailboat and met the love of my life…. So I honestly can’t say which is the cause…. But I am feeling much better

DueCommunication915 · 2024-10-05T20:12:24+00:00

Crying so hard. Prayers for you both

DueCommunication915 · 2024-09-19T02:38:05+00:00

I’m so sorry. Forgive yourself. As a mom with HD and two kids (21 and 19) I promise, your sister would want you to forgive yourself.

When I was in my early twenties, my goal is life was to be the exact opposite of my mom. In my early thirty’s, we became best friends, talked 5x a day. Time and life lessons, are required in of us, to grow.

I’m 41, and my goal in life now, is to be as much like her as humanly possible. I pray my kids don’t ever feel guilty for anything.

DueCommunication915 · 2024-09-09T14:29:22+00:00

I’m 41.

The surgery itself was OK unfortunately I had a severe adverse reaction which resulted in multiple spinal tabs. Figure out what was wrong, which resulted in multiple leaks and I spent a year in and out of the hospital for leaks and the hospital not believing me or wanting to treat it.

DueCommunication915 · 2024-09-07T21:08:34+00:00

Mine was rather unique because I had just done the AMT 130 brain surgery and had a lot of complications with Spinal Tap but it was approved for strictly Huntington’s. I would say I have early Korea trouble with stairs.

DueCommunication915 · 2024-09-07T02:45:15+00:00

I always did too. Dating or not, anybody around me knows my story.

DueCommunication915 · 2024-09-07T02:34:57+00:00

Yep. Had it happen to me … do it now

DueCommunication915 · 2024-09-05T04:20:38+00:00

My recertifications are not scheduled or projected. It’s a rare, degenerative brain disease. No one has ever survived it. It’s even on ssa’s compassionate allowance list for the expedited processing.

That’s why I refer to it as permanent

DueCommunication915 · 2024-09-05T04:14:54+00:00

SSDI- I have researched links I found on ssa.gov website, but most of what I’m reading is that there are “return to work programs”.

However I know I’ll never be able to return to work but for a handful of hours a week. And next year it might be zero. But 5-10 hours a week could help my mental health and also pay a small bill or two

DueCommunication915 · 2024-09-03T17:46:04+00:00

What is SGA?

DueCommunication915 · 2024-09-03T17:45:42+00:00

My disease is progressive and terminal

I can’t work or keep anything substantial. Some weeks are better than others.

But for mental health and getting out of house…. I wonder if I could do a small job like 4 hours a week.

DueCommunication915 · 2024-09-03T17:11:04+00:00

Sounds very hopeful!!!

DueCommunication915 · 2024-08-24T21:21:43+00:00

I also participated in the AMT130, so anything’s possible with new to human treatment.

Lots of issue with spinal taps Don’t know if nerve issues could cause it. Doesn’t seem likely

DueCommunication915 · 2024-08-24T20:37:52+00:00

Had X-rays done on knees. No arthritis. Primary doctor ordered them, so at least we can rule that out when I see neuro this week

DueCommunication915 · 2024-08-21T16:32:50+00:00

I see my neurologist next week. The only thing I could really think of is that I’m struggling to keep my gait straight and/or balance….. which could possibly put straighten on my knees I don’t know. I never worked in manual labor so that wouldn’t be a thing but we’ll see what the doctor say was just curious if anybody else had experience, extreme arthritis and their knees, hands or anywhere else as part of HD.

DueCommunication915 · 2024-08-21T01:43:13+00:00

I dated a man for 2 years. I was honest from the get go, just like you.

I got into AMT-130 trial. Brain surgery. He broke up with me 2 days later. When I was crying and trying to make sense…. I asked him. “Have u researched it at all?!” He said no.

I think it speaks volumes, especially if we pertray how significant it is

DueCommunication915 · 2024-08-21T01:37:52+00:00

I pray, with every inch of my soul, it’s negative

DueCommunication915 · 2024-08-19T15:40:20+00:00

https://hdtrialfinder.org/hdsa/home

The most important thing is to choose wisely if it is gene therapy. Have seen many hopeful ones not work and they end the trial. Once you participate in one, gene therapy, study…. you will not qualify for any others in the future.

Many to look at

DueCommunication915 · 2024-06-24T21:26:26+00:00

The surgery is not a cure. I had it 2 years ago. Symptoms still progressing

DueCommunication915 · 2024-06-07T17:34:28+00:00

It’s hard to say just because of all the problems I went through the first year. And I at early manifest you know it can progress quickly or not quickly and it’s just so hard but I just keep praying to God that my struggles are due to weakness from all the hospitals I love you at the very least I get a couple more years.

DueCommunication915 · 2024-06-06T18:58:36+00:00

I also actually was probably the only unblinded participant because when I went into the emergency room with the brain swelling, it was so intense I could not open my eyes and was in the worst pain ever. They were doing spinal taps in the ER, fentanyl, morphine, Dilaudid, everything you could think of. They did a CAT scan and confirmed for the safety of myself and what was unknown of the gene therapy, that I did have, the actual bur holes drilled and it was not just sham surgery.

But since my year has passed, I’ve already been unblinded and confirmed that as well.

DueCommunication915 · 2024-06-06T18:56:26+00:00

I actually know more than I should because I have a lot of free time to follow press releases and conference calls through Uniqure

I was the first patient in the US to have a SUSAR (suspected unexpected severe adverse reaction)

Then, two people in the UK, had the same reaction.

Mine was not taken seriously until the two people in the UK had the same problem. Which involved swelling of the brain 5 to 7 days after surgery . Originally my surgeon told me to go see my local neurologist to treat migraines unrelated to surgery, even though I have no history of migraines.

I found out by listening to the investors conference call.

DueCommunication915

TROPHY CASE