What's your relationship to HD?

Poll Started April 25, 2008 by Angela Coleman

Just curious to see the numbers of the people on this site and how many are touched by HD in the different ways.  So how does it relate to you personally?

What's your relationship to HD?

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Comments

Displaying 1 - 7 out of 7 comments

  • Bruce Kleinpeter

      Is this poll saying that most on this site are either HD+ or at risk? Middle aged? Well I thank God for this site.There are just not many people who even want to hear about this disease.My ex girlfriend just told me that I am obsessed.Well it's getting hard not to be when at every wakeing moment my hands and arms shake uncontrolled

    6 months ago

  • jenny

    Where's the spot for the ones who are carers or who have children at risk? "Other" just doesn't seem appropriate somehow.

    I agree with Bruce...it's hard not to be 'obsessed' when you live with it  or have those closest to you struggle with it 24/7.

    I love the fact that this site has all ages and stages. Lets keep talking......

    6 months ago

  • Patrick Kelly

    hug

     

    6 months ago

  • Sue McGann

    You forgot the caregivers. Also HD occupation could mean a lot of different things.

    6 months ago

  • Donna

    Watching your family slowly deteriate is very frustrating. They are so sick and angry. It is so hard to communicate with them. It is up and down constantly. It is so hard to find the right help especially for my neice who is only 26 yrs. old. She is always being taken to a crisis center and they just release her because they can't do anything. The family is totally fractured with all the upset. SOmeday or somehow there is an answer.Needs the right help. Constantly flipping out. Her parents are considering putting her in a live in facility.

    4 months ago

  • Lauren Holder

    Definitely being obsessed when dealing with this disease is very natural. I'm like that, too. Not a day goes by that I don't think about it and what it's effect is going to be like on me, what HD is doing to my dad now, whether I'm going to be like him, etc. Is that wrong? I don't believe so. I think the key is to remain as positive as possible and put all the obsessive energy we have into something good to make a difference in the community and bring awareness to others.

    4 months ago

  • Karen Bradley

    I must agree with Lauren.  My dad had HD and I recently found out I am gene positive.  Everyday I am thinking about it but how can you not think about it.  It's HUGE and it sucks.  I did start the COHORT study and am volunteering whenever I can.  I have recently accepted being the chairperson for the St. Louis Local HD chapter amarylsis campaign.  I do feel like I can make a difference that way.......awareness is everything as we all know.

    4 months ago

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