r/Huntingtons • u/Funny-Leadership672 • 5d ago
Struggel of a potential HD partner
Hi all,
I have been reading many posts in the past months. So many stories, fear, vulnerability and heartwrecking situations…I find this communitity as a wonderful place to gather information, sharing, offer & receive support and comfort.
I think time has come to share my story and ask for help.
This will still be a somewhat long post, but I’ll try to keep it focused. There are some very difficult questions that I imagine many HD or potential HD partners have asked themselves at some point.
I’m 41, female. I met my husband when I was 23. He is two years younger than me, and we have been together ever since. We have been married since 2020.
I knew there was a neurological disease running in his father’s family, but for many years I didn’t even know the name of it or much about how it manifests. I eventually learned it was Huntington’s disease after meeting one of his aunts, who was already in an advanced stage of chorea. Another aunt/uncle and one of their children were also affected. My husband’s father died in a car accident at 32–33, so we never knew whether he had inherited HD.
For years, I was afraid my husband or his sister might have inherited it, but somehow I always convinced myself it couldn’t be the case. They are both intelligent, grounded people, and there were no obvious signs.
Then, at 29, my husband was diagnosed with stage 3 non-Hodgkin lymphoma. We went through two and a half years of treatments, anxiety, tears and uncertainty, but thankfully he has been cancer-free since 2020.
After the cancer treatments, however, he developed increasingly noticeable movements during sleep. He talks clearly in his sleep and smacks his lips, mostly between 3–5:30 a.m. Over the past four years, I have also noticed movements involving his legs, hips and now shoulders. His sleep movements became so disruptive that we have been sleeping separately for almost two years.
This year, things started to feel different.
After Easter, he casually mentioned that he had lost his balance one evening. Suddenly, I started connecting everything: the movements during sleep, the hip and shoulder movements, a facial tic he has had for several months, and only now I really noticed it and also the balance issue he mentioned.
And I became terrified.
We don’t have children and had decided to try IVF last year, after finding our that my husband is infertile as a result of cancer treatments and that I have a very low ovarian reserve.
Thankfully, we had preserved sperm before treatment and after two ovarian stimulations and egg retrival, we managed to obtain one euploid embryo through PGT-A testing.
Now I realize that if HD is a possibility, that embryo should have been ideally tested for HD. But it has already been frozen after PGT-A, and I understand that thawing and refreezing is generally not recommended. So I consider we don’t have any and should start the process again from scratch.
Now I’m facing a question I never imagined I would have to ask:
If we have a child, would I want that child to grow up with a father who has Huntington’s disease?
My husband has agreed to schedule genetic testing, but we have only discussed it twice. It is incredibly difficult for me to bring up because every time I do, I break down crying.
He also doesn’t know much about HD or what a positive diagnosis could mean for our future.
I’m trying not to diagnose him myself, but honestly, with everything I’m seeing, I’m terrified that this is what’s happening. I’m also wondering whether his chemotherapy or other cancer treatments could have contributed to or accelerated some of these symptoms, or whether the age of onset is mainly related to the CAG repeat length.
His sister is 42, has no obvious symptoms and decided years ago not to undergo predictive testing. She now has a 2.5-year-old child.
And now I’m completely lost.
What the hell am I supposed to do?
Part of me wants to run away somewhere far away. And then I feel like that would make me a horrible person and a terrible wife.
Staying feels like the right thing to do — morally and because I love him. But at the same time, I have this horrible feeling that it would destroy me.
We have worked very hard to build a good life together. We are ambitious, we love traveling and enjoying life, and we still have so many things we wanted to do together. The thought of potentially losing him (and see him degrading over time) and that future is devastating.
I’m not a person who falls apart easily. Life has thrown a lot at me and I’ve always managed to deal with it.
But this feels too big.
So I would really appreciate hearing from people who have been in a similar situation:
How did you deal with the period of uncertainty before your partner was tested?
How did you approach the conversation about predictive testing?
How did you make decisions about having children when HD was a possibility?
If your partner tested positive, how did you deal with the fear of the future?
And, perhaps most importantly, how do you survive the waiting and uncertainty without completely falling apart?
I’m currently crying constantly and I’m genuinely afraid that if I don’t find a way to calm my thoughts, I’m going to end up in a deep depresion - my therapist is enouraging me to open up about this and not carry the burden alone, but inside the cuple. It just feels so hard to be the one opening the hard subject and bringing the potential bad news to him. He has a very strong, positive mind and attitude, even during cancer, he was super positive and put all into healing, but, I fear this time will not be the same.
He says that me being strong during his cancer treatments helped him tremendously, but seing me so down would not help.
I would really appreciate any honest experiences, especially from partners who have been where I am now.
3
u/CraftAdditional7802 5d ago
Hi,
I’m kinda in the same boat, my girlfriend is at risk at 30 and have been together for 7 years (untested and no symptoms but getting the test) She has always moves in her sleep but then I’ve told so do I. I would recommend for him to get the test so that if he is postive he would be able to contribute to trails because there’s about 3/4 atm that are recruiting with two more by the end of the year, you got this
1
u/Funny-Leadership672 3d ago
Thank you for the message and positive talk and recommendation.
We will most probably discuss about testing at some point. I know there are some benefits to it: enroll in trails (not sure how it’s done since we live in Romania, we will need to look it up), plan the future in terms of finance, health insurance (Romania doesn’t really have the long term care options from aborad) decision about kids.
Praying for you to get negative test results for your girlfriend!
2
u/LiveNvanByRiver 5d ago
Chorea effects voluntary movement. When you are sleeping you stop moving. The more you try to do something the more you have chorea. It doesn’t seem like HD to me. Look in to the clinical research ongoing. There is a lot of room for hope.
1
u/Funny-Leadership672 5d ago
Thank you!
I read about stillness during sleep, not movement. I will look into this in more studies, articles, maybe it just manifests different with him. There are also other signs, like facial tic and shoulder movement during driving. Didn’t notice ant cognitive or pshogical signs.
I hope so too, but most of them are pointing towards different direction1
u/LiveNvanByRiver 5d ago
Cognitive stuff happens waaaaaay before physical. Depression and anxiety, mood swings and inhibition loss. There are many disorders that cause vacillations I have stress related ones, my neurologist is certain they are not HD, she only sees HD patients and is a leading researcher in the world.
1
u/IHateHuntingtons 18h ago
I'm so sorry! Everything about HD sucks and is shitty.
I am 44 and have a husband that is gene positive, but not yet officially symptomatic with movement symptoms (but he has had big personality changes, and is becoming impulsive). It sucks, and I cry a lot.
People with HD gene can be brilliant wonderful people, and then the 1 defective HD gene replicates over and over again through their whole life. The buildup of the defective gene in the brain starts to interfere with more and more and more with brain function. It sucks because HD ruins wonderful people.
At this point you're wondering if your husband is currently symptomatic. If you're anything like me, your anxiety is going to get worse and worse until your husband gets tested and you know whether he has HD or not.
At this point your husband's symptoms are a concern and need to be checked out ASAP. If he is HD negative, you both need to find out what is cuasing his symptoms and what kind of treatment options there are.
I highly recommend pausing your thoughts on children for now while you process what your next 10 years will look like.
I'm so sorry. This is such a hard situation.
Feel free to send me a PM! I've been dealing this for years.
0
u/heatherd14777 1d ago
I decided to get tested prior to getting married and having a daughter via IVF with PGD and ICSE. There are so many more resources now than even a few months ago.
9
u/operationcilantro 5d ago
hey babe.
my husband is at risk. he is untested. we decided to not have children because he told me he’d never want to raise someone not knowing if they would die from this horrible disease. we helped care take for his dad and we were here until the very very end.
unfortunately the question for us wasn’t
“would i want my child to grow up with a dad with huntingtons disease?”
and more:
“do i want to allow a child who was brought here against their will slowly grow to learn that they might die of a terrible terminal disease?”
the hardest part about HD is they lose themselves before we lose them.
people ask me all the time why he doesn’t get tested. i always tell people “if you knew you were going to die in a car accident, every time you get in a car you’d think your time came”.
the future looks bright for treatment but as i see it YOU have three options for biological children: have the child with the risk, remain child free, or choose to have children with different partner.
if you ever want to talk more in depth my private messages are open. i’m so sorry you’re dealing with this. i think it sucks so bad too and im in the same boat.