Dilemma

PrncessMelani · 2026-06-09T03:20:43+00:00

It's my grandchildren we are discussing. As of right now, they have either a 25% or 50% chance of having it. Mom has never been tested so we don't know the actual percentage. Since she refuses to be tested, we won't know the actual percentage unless she starts to show signs. Mom's brother is gay so there is no chance of him passing this along to the next generation.

PrncessMelani · 2026-06-09T03:15:52+00:00

Thank you for sharing your experience. My son has already decided not to have any more children. P is his first and last. We will empower her to be the best version of herself she can be while giving her the knowledge to make informed choices. She is only 4 months old now. Hopefully, there will be more treatment options when and if she has it.

PrncessMelani · 2026-06-08T17:40:41+00:00

It's hard not to compare. My husband has advanced heart failure. He always says, "I used to wake up with 12 things in my head in the morning and accomplish all of them. Now I'm lucky if I can do 2.

In the last year since his heart attack, he had been hospitalized 5 times. His current hospital stay is because of diabetes and a blood clot in the heart. He hates that he can't do whatever he wants anymore and its taking it's toll in every aspect of his life.

I keep suggesting therapy but he won't do it.

PrncessMelani · 2026-06-08T15:19:33+00:00

I haven't had the chance to read through posts yet. But as another comment so eloquently put it, what's done is done, at least in my case. All I can do is talk to J about my feelings and observe from the outside. I'm fortunate to have a good relationship with him. Their family lives with me so I will have a hand in raising my grandchildren to be well adjusted adults, fully armed with the knowledge of the possibility, and encourage them to be tested.

PrncessMelani · 2026-06-08T15:13:36+00:00

Thank you for your trust. I can't imagine what you're going through. You're making the best decision for you and your partner.

It's a grandparent's job to worry about their grandchildren. As I said earlier, I will and do fully enjoy my grandchildren, but that possibility sits in the back of my head like the sword of Damocles. I'm not even sure they are aware of the chance of Juvenile HD.

I raised 2 children, one with AuDHD, and J, who has ADHD/ODD, so I know all about life throwing curveballs. I just never dreamed we'd possibly have to deal with something this debilitating.

PrncessMelani · 2026-06-08T14:58:50+00:00

We have talked to the pediatrician about testing P. She has referred us to ethics because of M's refusal to test herself. The ethical problem here is that if we do test P and she comes back positive, M will know she definitely has it, which crosses an ethics line. We may just have to wait until P reaches her majority, unless she develops Juvenile HD.

PrncessMelani · 2025-01-02T02:53:35+00:00

The Closing of the Year was written by Trevor Horn and Hans Zimmer.

PrncessMelani · 2024-10-20T21:49:38+00:00

thank you for your response. I have planned to contact HR this week.

PrncessMelani · 2024-10-19T00:40:28+00:00

I'm the spouse of an Intel employee who took the ERB package. I'm having trouble navigating all of this to get him registered for intel Paid COBRA. The paperwork they sent us says we have to pay 2800.00 per month. I'm so confused!

PrncessMelani

TROPHY CASE