I want to start a discussion with those of you in your teens or below who either have been diagnosed with HD or are at risk for inheriting it.
- What issues do you deal with?
- How do you feel about HD?
- What do you want to say to us who are older?
- How can we support you?
- Can you share forums that we can post regarding places for young people to go that have questions and or encouragement that we could post?
Thank You... Julie Sando/Contributing Editor/Huntington's Disease.
What issues do you deal with?
Most teens involved with HD deal with the fact that one or more family members is not normal. This is especially the case when one of these family members is a parent. We have to watch our parent deteriorate from a normal loving parent that would do anything for you to someone that is less than capable of expressing the compassion they would like to because the disease affects their judgement and behavior towards everyone.
This is easily seen in the case of my mother. Although inadvertant, she became unknowingly abusive towards me, and I was forced to go to day care until my grandmother would arrive home from work just so I would not be left alone with my mom.
Also, there is the concept of explaining the situation of your family to your friends. How do you do it? Do you do it at all? These are questions each of us deal with in our own ways. Simply put, things are a lot different when you have a parent with HD, in thousands of aspects. If you can think of a scenario, chances are it's different when HD takes a parent out of the picture.
How do you feel about HD?
I hate it. Everyone does. I wish it didn't exist, but it does, so what can you do about it. You just have to stay positive and not let it beat you. Sit and complain, or stand and fight. Be active, do what you can as long as you are comfortable doing it. Not all people are outgoing and willing to risk criticizm by putting up posters and things of the sort, but those same people can fight HD in other ways. It all depends on the person.
What do you want to say to us who are older?
Not sure where you were going with this question. See last few sentences of above paragraph.
How can we support you?
The discussion groups at this year's convention were great in my opinion, we just need more of them.
Can you share forums that we can post regarding
places for young people to go that have questions and or encouragement that we could post? I think we should just keep an email ring going around, and have questions and advice circulated in that manner.
Thanks for reading
What issues do you deal with?
I deal with the issues of whether to be tested or not when I turn 18. I also have the worry of my brother having it. My main issue right now, is trying to make the best of the moment, my mom is moving out soon, so I'm trying to help my best with her.
How do I feel about HD?
I hate it and the fact that my life was changed so greatly by it, but what can I do. I know that it has made me into a better person now and as well as in the long run. So I do the best I can to not be too big of a baby and do all that I can to help educate and be active with HD.
How can we support?
This really is the same question for me. Personally, I want someone to listen and be there for me when I need a shoulder or helping ear. I don't want them to try to fix my problems, just help and give advice. We all need friends, but with a disease like HD, I depend on my friends to help me not be totally depressed.
Can you share forums that we can post regarding places for young people to go that have questions and or encouragement that we could post?
I think it is great that we have our e-mail chain, I think we should expand it to more like a monthly newspaper or something. I think it's great that we try to help each other out, I encourage everyone to be active in this and feel free to ask anything, whenever possible. And I greatly encourage those who can to come to the National Conventions in California this summer.
what issues do you deal with?
for starters HD shapes the way i make decisions. adults have been telling me for years to not let HD rule my life. this coming from people that know nothing of the situation. marriage and children are an issue, just like testing. testing is a touchy issue, and should be left only for the AR person to decide what to do.
how do you feel about HD?
i don't particularly like this question because it gets you nowhere. what kid will say yes. of course HD sucks and it is awful to have to be a responsible teenager, and look after mom or dad. I'm 19 and already worry about finding good insurance and making sure i can find a good plan to cover rest home costs. so yeah, i guess you could say HD sucks.
what do you want to say to us who are older?
as much as i appreciate the wisdom that comes with age. adults need to respect the decision to test or not to test. it is intensely personal and not for everyone. sometimes the best thing you can do is listen to these AR kids and realize just how much they have seen in such a short amount of time.
how can we support you?
support with your ears and listen to our needs.