My mother was diagnosed with huntingtons disease when I was 17, my dad died when I was young so caring for her was souly on me as well as having to get 2 jobs to pay for the house.
I watched my mother become a shell of the woman she was, I saw her in pain, unable to control any part of her body and as awful as it sounds I was relieved when she passed because she was no longer suffering.
I always knew there was a chance I had the gene but I never wanted to know. I decided to push it all away and make something of my life. I’m now 31M and I’ve gotten married and we have 2 kids. I’ve recently started having muscle spasms and I decided now was the time to confirm it and unfortunately I have the gene and am experiencing early onset symptoms of huntingtons.
I saw what it did to my mother and to me and I won’t let that be the way my wife and kids remember me. They don’t know about this as I’ve been hiding it but I know I won’t allow them to see me slowly wither away. I’m going to find away, to end my life and I will spare them the possibly years of watching me become a shell of a person. My passing they can get over but seeing me like that will stay with them forever, I know that, and I can’t do it to them, I won’t do it to them.
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Why did you have kids you know you could pass the gene on to?
Edit: OP says they did IVF. He should have added that to his original post, not after being called out for it.
You had kids without being tested?? You left your wife in the dark and now she has to get them tested so she knows when to prepare for if her kids may die too.
You will surely leave a mark on your family…. please don’t add suicide to the list. You already made things very tough, don’t make it worse for them.
My aunts husband has Huntington’s disease, apparently so did one of his parents.
He never got tested for the gene and has 3 adult kids who can possibly also carry the gene.
One is showing symptoms of the disease and another has kids who can possibly also have the gene.
I worked in a nursing home from 16-18, one of our sweetest residents had huntingtons and I am so sincerely sorry you’re going through this.
Sorry but they need to know so kids can get tested and mom can see the signs to look for in the kids
Im so sorry for this absolute gut punch
I think it is admirable that you want to spare your family from your experience with your mother, but i would encourage you to get more information. Your prognosis may be different, and treatment options have likely come a long way.
I wish you the very best..
yeah just tell em, you win nothing by not telling them, you’re going to die either way, make legal arrangements now or you’ll just be giving them a harder time
I’m sorry you are facing this.
I want to urge you to consider that your family’s experience could turn out very different from yours with your mother.
You were alone and responsible for her and everything else, and you had also lost your dad. Yours was a traumatic experience in every way.
Your wife and children have each other. They are not alone. Your wife is also not 17yo – she has resources and awareness that you did not have.
Your wife also knew this was a possibility when she married you and had children with you.
You owe it to your wife to share this news with her and develop a plan with her. You started a marriage and a family together – you should face this next phase together. You owe this to her and you deserve it yourself.
Together you can see doctors and counselors to understand your situation and options available to you.
Counselors can also help you both learn how to talk to your kids about it and how to involve them. This will be a devastating experience for them, but you can give them some agency and tons of love within it. That will provide them with comfort forever.
If you keep your wife and children in the dark and just leave their lives, you will be inflicting an intolerable trauma on them. They deserve better.
I’m so sorry. Huntingtons is such a horrible disease.
Hey there, not sure if you’ll see this but I hope you do. I know two different people who lost their dads to suicide. If you think that won’t haunt your kids worse than your mom haunted you, you’re very wrong.
One girl, her brother found her dad hanging when they were kids. When she was 16, we were close friends. She started dating a 34 year old man. She lied to her mom about it. She hid it for awhile and when her friends found out, she threatened us if we told anyone. She’s better now, but I’m convinced her issues stemmed from this. They were pretty significant. She had an eating disorder too. She’s the better story.
The other one, his dad drank himself and ODed on purpose. Left them notes and everything. That child went into a mental institution pretty quickly after that happened. He lived to be in middle school before he did exactly what his dad did
I’m not telling you that what you’re looking at is easy. I’m just telling you that you really need to research what happens to kids when their parents commit suicide.
I wish you every thing good in this universe.
Edit
https://pubmed.ncbi.nlm.nih.gov/35049479/
There’s data from the NIH and two real lives I’ve personally seen effected. If you’re 31, it’s likely these are little kids. You’re the one in control of your destiny, but if you’re only going off of your own experience, I ask you to research others.
Aren’t you now worried that you passed it on to your children? 🙁 Why did you have them? Was it simply youth, denying it was possible? I get that, but now one day they may well wish you hadn’t had them, or maybe by the time they’re diagnosed, there will be a cure!
You have every right to do what you want with your life. I’m sorry you that you feel you have no other answer. I get that.
Talk to your wife. You don’t get to make this decision alone.
They could probably use CRISPR tech to knock out the gene and overwrite it. Check to see if there are clinical trials for this. Definitely worth a try.
Wait wait wait… please please please don’t end your life. You will leave more scaring than your disease will. My father was everything to me and losing him to his own will broke me forever. I have so many questions I wish he could answer. It left me in shambles and lost. A hole is in my heart that will never be filled. The type of trauma you experience when losing someone in that way is unexplainable, a pain like no other and the loss hurts so deep. You will be causing worse pain than your family watching the disease play out. Your family will have answers and know why you’ve passed. If you do this on your own will, they will forever have no answers and feel a hurt that no one should ever feel in their life. Please don’t do this, I beg you. I miss my dad so much, writing this brings tears to my eyes. I would do anything just to have him back. He was such a wise man and good soul. My life changed permanently.
You still have many many years in front of you until it consumes you. Use them wisely. Make happy memories.
Please tell your wife. Your kids may be too young right now, but telling your wife will prepare her for things to come. Get treated so you can live peacefully as long as possible. Health science is always moving at light speed, especially neurology.
Do not end it too soon. It will only end up in pain for your loved ones.
If there’s no way for you to go back in your decision, leave them a letter, explain to them what you have explained here.
Don’t leave them wondering if you weren’t happy with your life or your family, don’t leave them wondering if they’re guilty of your decision in any way. Explain to them why you took that decision instead of any of the alternatives.
I understand your wishes and why you feel this way. It is a horribly devastating disease. I am not saying suicide is ok or not. I do not live in your shoes.
That said make sure you have your affairs in order and nothing you do voids something that can help your family. Plan your living will so no life savings measures occur if you are unable to make choices for yourself and put someone in control that has shared values to honor your wishes. I would also see a therapist and make sure you talk this through with someone out side your circle. Your experience with your mom is its own trauma and you would be causing trauma to your family. Get a perspective what that will look like for them.
I would take what time you do have to make memories. Spend the time and soak it up. Make videos and write each member so they have parts of you.
I am so sorry you have this! I pray you feel loved and have a peaceful transition how ever it comes.
I wanted to post because Huntingtons runs in my family as well. It’s a rare disease so I imagine most people commenting here have NOT seen what this does to individuals and families.
I am so sorry. I feel deeply for you and I know what kind of monster this is to battle – you are very brave and I imagine you’ve been brave your entire life.
Big hugs to you. Life is so unfair.
You had kids without having the test and now you care how your death will affect them instead of how their own lives will be affected?? Some may call what you plan to do selfish… I say you e already done the selfish thing.
First, Im so sorry you and your family will have to go through this. Progressive neuromuscular diseases are particularly cruel on everyone involved.
What country are you in? In Canada, we have MAID (medical assistance in dying). This method would allow you to pick a certain point in the progression of your disease to go peacefully, surrounded by your family. It could be discussed in advance, and they could all have time to prepare themselves and say their proper goodbyes. The result would be far less traumatic for everybody involved.
This is why I’m glad here in my state (Australia) we have voluntary assisted dying laws – you can go with dignity on your own terms for cases like this. I’m so sorry for what you’re going through. Please don’t leave your kids in the dark, be open and let them love and celebrate you before you go.
Anyone I know who has had a parent die randomly/suddenly through suicide has just as much if not more trauma/challenges as losing a parent through illness. At least have them understand the reason behind it, so they don’t think they were not enough to keep you around. Also they need closure/goodbyes etc. If you tell them. frame it as assisted death due to medical reasons to them but don’t just suddenly go and not explain to any of them. I guarantee that will haunt them more than any other option.
I saw my aunt go through cancer so I’d also kill myself if I ever had to go through that.
There is a lot of word going into stem cell therapies for many diseases, including HD.
It’s worth investigating!
You’re taking that decision away from them. You’re not giving them the option to love and care for you. I would be eternally angry at my husband if he just decided I didn’t get to love him in sickness and in health.
ffs, If nobody here is able to convince you otherwise, at least explain in a note or smth. But seriously.. reconsider. You’re running from this, without letting anyone get the chance to carry you- the most deeply human experience of love
It must be so difficult for you handle. See it is a genetic disease. It is kinda bond to happen one way or the other. I would really urge you to tell everyone and make the progressive disease slower. Hiding it will make it go worse. You deserve the care and nobody is sufferer here. Your wife and kids want to see u as a warrior.
My heart goes out to you OP. I am a nurse and you can go on hospice as you will qualify. Hospice will be able to make you symptoms manageable so you can spend those good days you have making good memories with your family. Also if at some point your symptoms have become unmanageable and you feel you are ready Hospice may be able to transport you to a state where physician assisted death is legal. I pray that everyday you have in the now is filled with love, happiness and sharing beautiful moments and memories with your family.
I read a book by someone in your shoes. It’s called five days left. Absolute heartbreaker but beautifully written and very educational. Not sure if it will help/harm you but I encourage anyone curious to pick it up.
You have my sincerest sympathies, op ❤️
As a widow who lost my 39-year-old husband 19 months ago that is absolutely cruel of you to do to your wife and kids. It’s one thing if you want to end it before you deteriorate, but you’re absolutely should give your family a chance to say goodbye to you and tie up loose ends
A close family member died suddenly recently. The hardest thing about it was not having a chance to say goodbye. One day he was here, the next day he wasn’t.
Don’t take that away from your family.
It will be painful in the moment. The alternative will be painful for a lot longer.
As someone who as worked with Huntington patients and who lost family suddenly for various reasons.
Talk with your wife and together with her with your kids…you may find that you would want to endl your life at some point Andi can’t say it’s unreasonable but talk with your family and give them the chance to say goodbye…
You had children knowing they may inherit the disease from you. You owe it to them to show how ugly the disease is so that they can make informed decisions about their future and if they have children.
My husband had terminal cancer and passed away when our kids were 12 and 13. The say 9 months of his life he withered away. But he was still with us. We still made memories and had time to say what we needed to say to one another.
It’s awful and it’s hard, but you still have time. Don’t rob them of that. When he was sick my husband would express concern that he was a burden and we would be better off if he just passed quickly. I used to tell him I didn’t care if he ended up as a head in a jar, as long as he was still alive and fighting we would figure out a way to make it work. Unfortunately, we didn’t get that chance, but the sentiment still stands. They love you and they will want to spend what time you have left with you. Don’t take that from them.
I am so sorry. I lost my mother to Huntington’s in 2012. I took care of her for 3 years, and she was in a nursing home the last 3 years. I’m 45 and also have never been tested, but my husband and I decided to never have children because of the risk. I also had two friends (sisters) who had it. It ran on their father’s side and their father ended it when he was 29 because of it.
This is a very difficult situation either way, but your wife and children need to know the situation. Your wife married you knowing the risk. She deserves to know what is happening.
Made a bad decision back then now going to make another one…. Stop making bad decisions and talk with your loved ones…