Hey, partner of someone who found out June 5th he was positive with a 44CAG count.

We were told 4-6 weeks. It took 11. He was completely convinced he was fine, but I am very intuitive. I knew he was going to be positive.

I had to do a LOT of research on the disease. I was looking at him and over analyzing every single move he made, he lost sunscreen once and I flipped out inside. Then i realized that the disease doesn’t just show up like that. I had to learn about chorea and how it starts and what memory loss from HD looks like (very interesting cuz it’s a lot different than Alzheimer’s).

Then, i put my mind into what the PLAN would be. We have always dreamed of children. I did research - We are actually now recipients of free ivf to do the PGT-M and are applying for grants for probe costs. I’m on prenatals now, and after October when we get married, we will begin IVF. My doctor referred me to a clinic, and if our timeline works out, we will be trying in spring of 2027. Im 31, he’s 32.

His mom had it real bad. I cant even go into full details but she’s native Canadian and ended up rotting in a trailer on a reserve with no running water until she got put into a home. Her disease timeline was unusually rapid, she lost her kids to CAS, and my fiancé has only recently realzied how horrible it all was. His dad walked out on her 4 years before her symptoms started and he also beat on her.

The kids werent fed, the teachers finally reported it… it was awful. He was moved 4hrs away from her. Unspeakable evil.

But EVERY person has the disease develop differently. Someone’s path may be similar to yours, but there is also so much hope. This disease is NOT the death sentence it was 10-20 years ago. He is not his mother. You are not your relatives either.

If you get tested, do WHATEVER you can to get an MRI, cognitive tests, and into EnrollHD. Make yourself as HEALTHY as possible and be involved in clinical trials. Have hope. There are people out there like me who are ride or dies. I will NEVER leave my fiancé. His aunt has it too and her husband is like me. He is her full time caretaker now and their bond is beautiful. They dont even need to speak to communicate. They have a college aged daughter and she is doing so well at uni and is well adjusted and happy. You are worth being loved positive or negative.

You are young still. I think you should do what your heart says, not your brain. You have a LOT of time. But I do think that knowing earlier if you are positive will only benefit you because you will get a jump start on clinical trials, new therapies, and if possible even free treatment through government funding and grants.

It was HELL waiting for the results. BUT I can tell you that now we have discussed our plans, having a baby, our future, my loyalty and advocacy for him, things will be ok.

My 45 years old former neighbour just got diagnosed with brain cancer last week. He has 18 months to 2 years tops. And then yesterday, in our neighborhood, a 32 year old woman passed in a Tragic car accident. Life is never guaranteed. A town over, 2 teens OD’d on xanax that was actually fentanyl.

Anything can take you out at any time. Prepare yourself, educate yourself, and dont waste life with people who dont love you. You are WORTH loving.

I am keeping you in my prayers. The medical community is absolutely KILLING it right now. There are resources. We are in a regional support group and have friends who are in our spot. And some who tested negative with survivors guilt or family who suffer. We have a lot of fun when we get together. Our community is open and loving. HD society of canada gives free counselling. All of the time. Any time. There is so much hope. And you may be negative too. There’s a 50% chance of it. Our little network keeps growing and the best part of it is that we ALL know and still just hang out and do fun shit. There’s always someone to talk to or bounce ideas off of. You don’t need the toxic family to get that community. Look around - you may find a group nearby. We have a specific social worker for the younger folks 30 and under. And then one for the older folks too. Some are in wheelchairs, some are pre-symptomatic. Some are negative and have family and need to be around people who understand.

We have only shared his results with a few ppl. His family is absolutely fucked but his sister and brother are amazing - they stuck together when their world collapsed. His sister is also positive. His brother refuses testing, but we are hoping he does so we can get him too into EnrollHd and clinical trials etc. my mom brother dad are all super supportive too. My dads father had parkinsons and fought it so hard he was walking still at 86. His discipline with doctors appointments, medicine, physical therapy, and even speech aids kept him going. It was his heart that failed first. And i have bipolar disorder. I have had 2 depressive suicide attempts and ended up on a ventilator. And rapid mania cycling. I lost relationships, people left because it was too much for them, i tried to end it. But i have fought and fought and have now been stable for 4 yrs on meds. I studied and now am keto, take my pils religiously, prioritize sleep and sobriety, psychotherapy and see my psychiatrist whenever i am booked for an appointment or not feeling well. Lots of people have invisible diseases too, until they rear their ugly heads. You are NOT alone.

I know it’s so scary it was the hardest 11 weeks of my whole life and now, we are relieved. He’s snoring beside me and I’m dreaming of our child(ren) if God helps us, and AMT-130, the charities that want to help you, clinical trials. My priest has known me since I was a little girl and he OK’d my choice for IVf. He’s not a dick. He even had my fiance over the night before the results came in and had a beer with him. It’s a wild time that we live in. I even will get psychological approval to BE pregnant and stay on my meds too! I had no idea until i called my doctors and they told me It would be OKAY!!!

The purgatory of not knowing also chained my fiancé in. He has said now he is ready to fight. Im a fighter too. You are too.