Select your wallpaper: Select your wallpaper: Sign up to save your choice Close
Forum Store Donate

Experiences of living in a family with HD

United Kingdom
Life is to be lived
Avatar
Young adults Forum support

There can be various ways to experience living in a family with HD. Some good elements and some not so good parts. If you live in a family that has been impacted by HD then share your experiences of that if you want.

We are hear to listen.

Matt

Poland
Happiness is easy.
Avatar
Young adults

We haven't known about HD in my family years ago. My Dad used to be very aggressive (right now we can easily say it was HD's fault), it would be understandable if my parents got divorce. But for my Mum the marital oath (wow!) was very important, she was (she still is) very patient and luckily now we can live all together, we can look after my Dad and we all have a good contact with him. Because of HD we - the family members - are closer to each other.

United Kingdom
Life is to be lived
Avatar
Young adults Forum support

Hi Marianna,

That is a really interesting post you have made. Normally we make the assumption that the impact of HD is always a bad thing on a family. But you've stated that there can be benefits to being in a family with HD too and that is good to hear.

Matt

United States
Avatar
Young adults

Our family relations really have not changed significantly with the diagnosis of HD. My Dad always was a quiet man and He still is, even after we knew about him having Huntington's. Though, it is difficult to see him having problems with staying focused on a task and just puttering around every day. I think that it really has been good for him to do things outside of the home, like when he volunteers at soup kitchen close by. This helps him to feel like he is helping people and really doing something for good, which makes all my family feel better. :)

Poland
Happiness is easy.
Avatar
Young adults

I strongly agree with you, Sierra. If we are able to encourage our patients (parents, siblings) to do sth, we have to do that! They love being involved in any actions and events (if they aren't too weak and they don't have depression). For instance yesterday we adopted a puppy from shelter, he's great and I see that my Dad loves playing with him! :)

United States
Avatar
Young adults

Yes! It is good when you can get the person that you love ( that has HD) to do something, to really live. My Dad does not have alot of chorea yet so he can still do some physical stuff. Alot of his issues right now are cognitive (like staying focused, etc) so he enjoys being active, exp. when they're are other people around.
He just needed to feel like he was still productive.:)

Norway
Dream as if you'll live forever. Live as if you'll die today.
Avatar
Young adults

My grandmother had HD, she passed away about 7 years ago. In my experience she was mostly happy and smiling, at least when I came to visit. I remember her sitting in her wheelchair with her smoke. She could barely talk, only close family understood what she said. I do remember the time when she could walk, even though i was about only 6-7 at that time.
My mom haven't showed any signs of HD and hopefully does not my mom or her sisters get it. But many of my moms cousins and aunts have it, and I hope the generation of HD in my family stops at my mother :)

United Kingdom
Life is to be lived
Avatar
Young adults Forum support

Hi Renate!

Welcome to HDYO!

Thank you so much for sharing your experience.

It sounds like you have nice memories of your grandmother, despite being very young! Glad to hear that your mom does not show any signs of HD. Let's hope that continues for a long time! :)

Great to have you here on the forum, nice to see young people from Norway have found the site! How is support for HD where you live in Norway?

Take care,
Matt

Australia
Avatar
Young adults

Obviously HD has a bad impact that goes without saying but it also has extremely good impact on me and the family and that’s what I want to share.
My dad sung on the weekends ‘Roy Orbison’; Huntington’s made little imperfections in his voice which I loved.
He also use to shake my nephews (his grandsons) hands and jump up and down acting like they were so strong they lifted him off the ground.
He was daring and courageous; he climbed a mountain/rock on holiday in the pouring rain and wind even though his body did not want to comply.
I use to love watching him sleep as this was the only time he was still.
My family benefited as we learned patience and resilience. We became so close as we all were going through the same thing. I hated that my dad suffered through Huntington’s but now I couldn’t imagine living all those years without it.

United Kingdom
Life is to be lived
Avatar
Young adults Forum support

Alex - you said in your welcome post that you wanted to share your experiences with others. You are sharing a very good experience here and I thank you for it.

Sometimes it is easy to focus on the negatives of HD, but there are positives to be had too and you display that here with your stories about your father. It sounds like he was a lovely man, with his singing, playing with his grandsons and determined too climbing mountains!

HD can push families apart sometimes. But it seems like yours got closer and the fact you feel you couldn't imagine living those years without HD impacting on your life is a really good sign that you have accepted HD and have perhaps got your father's determination to live life despite what it throws at you. Would that be a fair comment?

Thank you Alex for your posts today, they have been really helpful to hear.

Matt

Australia
Avatar
Young adults

Hey Matt,

Couldn't have put it better myself :)

Being on here and reading about other experiences is strange because some of the things I definitely identify with but some are very different from mine.. It's really helpful :) great site.

United Kingdom
Life is to be lived
Avatar
Young adults Forum support

Hi Alex,

Yes, we all have different experiences of similar situations, which I guess is what makes HD so interesting and varied.

I am very glad that you like the site :)

Matt

United Kingdom
Avatar
Young adults

Hey, I was wondering if anyone else has had this experience.
My dad has HD and he has 2 brothers who don't, my dad has always been a family man, and from a young age, he wanted to have a family and a wife, and children etc. my dad struggles to walk, but his speech is fine, he can't barely pour the water from the kettle into a cup without spilling it. Now, my uncles don't have the gene, but they go out and get drunk every weekend, go to gigs, go on holiday, and neither of them have any interest in settling down or having a family, and I just feel like it should of been one of them that got it and not my dad, and I get very annoyed at the fact, and I know my mam does too, I don't want to feel like this, but more times that others I juts wish they got it and my dad didn't, I envy them for not having it! Don't get me wrong, I love them both so much, but I just feel like they should have it, and me dad should be able to drive me places, and stuff!
Kirsten (17)

Canada
Things happen for a reason
Avatar
Young adults Forum support

Hey Kristen,

Thank you for sharing your experiences. It is understandable that you are frustrated at your family circumstances and are jealous that they can live without worrying about HD.

I am from a family of three and we all got tested a few years ago. At the time I was in university and felt somewhat well adjusted. The results came back that I was the only one out of my siblings to be gene-positive. There were times when I was frustrated that I was the only one that was gene-positive because to some extent I felt like I was going somewhere compared to my siblings who had essentially dropped out of high school without finishing. It took me some time to appreciate that my family is lucky that only one of us tested positive because all three of us were at risk. Then I thought that I was dealt this card because I have the ability to take it in stride and not let it control me.

Hope this helps. Your Dad is very lucky to have you as part of his support system. Thank you for sharing!

Cheers,
Chelsie

United Kingdom
Avatar
Young adults

Hey Chels
Thanks for replying to me, it has helped me a lot! And I know, everyone in my family understands and accepts the facts, and don't get angry at my dad of he doesn't want to go somewhere, because he's having a bad day!

Kirsten

United Kingdom
Life is to be lived
Avatar
Young adults Forum support

It sounds like you have a dad to be proud of Kirsten :) HD or no HD.

Matt

United Kingdom
Avatar
Young adults

I do, I love my dad so much, he always makes fun that he has it, saying we should buy him one of those cups that doesn't spill when it gets tipped over, and a bib aha!!
Thansk you guys:-)

Australia
Avatar
Teens

Hi, I'm Hannah :) I'm 15 and found out my Dad has HD last year. His HD is only mild so it's not so bad at the moment but nothing had changed for a while so I felt I could forget about what he told my sister and I. He has just recently left work as he was finding it too hard. This means he is home all of the time. I may sound ungrateful but I am not coping with this well now that it's obvious he has HD. I keep thinking about what is going to happen and what if my sister or I have it. I try to focus on my studies but with holidays coming up I don't know how well that's going to work...If anyone would mind sharing how they coped/are coping I'm in need of some ideas please :)

Jem
United States
Avatar
Young adults

Hi Hannah,
I saw your post, I was actually exactly your age when I found out my dad has HD. It doesnt get much easier living with him, but you just have to remember to focus on yourself. Try to get a hobby you can do at home so that you're not thinking about it so much. Not saying to completely stop hanging out with your dad, but if you have a friend you can go to whenever you need to get out, it helps. You really just need to focus on your life (still). Anything that you might go through with your dad; just remember, its not him, its the disease. All I can say, is enjoy your time with however he is now. Itll get a little easier to cope with after a little while. Im 21 now, still at home with my dad, helping him however I can. It saddens me about the future, but theres nothing I can do to stop it. I just try to enjoy being with him now, and I also try to have fun outside of home.

United Kingdom
Avatar
Young adults

Hey Hannah! Yeah I was your age a little younger when my dad told us, and tbh I deal with it best by not ignoring it, i feel like if I sit alone and don't speak to my dad about anything then I feel worse, I went through a period where I couldn't get to sleep on a night like constantly over analysing things, but I talk to people, I've been to a few weekends away with some kids my age and it's really helped, like we stay in contact and I can just speak to them when I want:-) idk if you can message people on this bit if you want to speak to me, I'm more than happy to:-)