Speaking Out ~ Living With HD


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Stacy JHD
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without the express written permission of the author.
Stacy has the Juvenile form of Huntington's Disease.  She lives in Michigan with her parents.

What Issues Do You Deal With Living With HD That Is The Hardest For You?

Swallowing, being in a wheelchair, I think people are always looking at me in public places so I rarely go out anywhere and refuse to eat out in a restaurant.

Has Living With HD Affected Your Education? (Absenteeism/Lack of Concentration/etc.)

Of course!  I was in my first semester of college when I found out I had HD.  I had big college plans and they were shot to hell....I tried the second semester, but had so much trouble focusing/
concentrating that I couldn't continue.


What Things Do You Do To Help In The Care of an HD parent?  Do You Feel This Is Fair?

I am 21 and got the gene from my biological father who I didn't know well and my folks divorced when I was 6 weeks old, so this whole HD thing is new to my family and I don't have to care for anyone, they care for me.

How Does Helping With Your Parent's Care Affect You Socially?  Personally? Financially?


Again, I am the one with HD and my mom and stepdad take care of me. It has been a toll on them socially (because I never want to go anywhere and no one takes care of me except them, so they can't go out). Financially, we have good insurance, but the Q-10 is very expensive and that really digs into my folk's wallet.


What Advice Would You Give to A Young Person Living in A Volatile HD Family Environment?


Keep busy ..... mind and body.


How Have You Handled The  Anger You May Feel Living With HD?  What Has Worked Best For You?


I don't believe in God anymore, I'm agnostic. I really don't know how I've handled the anger, I'm still angry, but am lucky to have lots of loved ones who show they care in so many ways.

What Is The ONE Thing In HD That You Are Most Afraid To Discuss With A Parent?  Why?


Sexuality .... because it's embarrassing, though I still have desires as a 21 year old.


How Open Are Your Parents In Discussing HD With You And How Does This Make You Feel?


Although my parents are very open and honest, we don't discuss it too much, we don't like to dwell on it, just take it one step at a time and do the best we can. One thing though, I have already planned what I want for a funeral and they don't discuss that with me, they just say "Whatever

you want/decide will be done".


What Things Have You Done To Help You Live With Being At Risk For HD?


I got the test ASAP after I was 18 and tested positive as I was already having problems with my gait, so "at risk" means nothing to me now. I do know that I'll never have children or

a boyfriend.


If You've Tested HD Positive, What Are Three of The Most Important Things You Feel Would Help You?   Are You Getting That Support?


The love, support and caring of family members, the understanding they should have, if strangers in public wouldn't stare and wonder what my problem was.


I also need friends, I have none, except once a year when I see the NYAer's. The local HD support groups are full of old people and a 21 year old just doesn't fit in very well, so I don't do those anymore.


What Type of Support Is There Available In Your Area For Young People Living With HD? Would You Recommend This Support To Others?  If So, Please list Contacts.


Not much really, there's an exercise class near me every Sat. morning, but I'm not interested in that. There is an HD camp in August that I just found out about and I'm on the waiting list for that, but I don't know if I'll get to go or even if I'll be contacted.


Would You Be Willing To Communicate With Someone Your Age Dealing With These Things?


I'd LOVE to talk with someone my own age that has my problems, there just doesn't seem to be anything out there for me.