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.
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. :)
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! :)
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.:)
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 :)
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?
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.
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.
MattIn reply to Alexandra
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.In reply to Matt
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 :)
MattIn reply to Alexandra