Speaking Out ~ Living With HD

Michelle-At Risk

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Michelle At~Risk
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without the express written permission of the author.
Michelle was 16 years old when she wrote this.  She is graduating from high school June 2003. She is at risk for HD and lives in California.

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

The hardest issue for me is probably my at risk status and not having a daddy like everyone else. Sometimes I just need some testosterone in the house some stupid male advice to make me laugh. J Its also hard knowing that it was my choice not to see him very often and now hes dead.

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

Definitely. Not so much absenteeism, though I am gone a lot, but concentration. I find myself not being able to concentrate on anything or worrying persistently. "The worrier" and "the crazy one" are my two nicknames at school.

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

I didnt care for my HD parent. He was always in a nursing home. I did care quite a bit though for my non-HD parent. I was very angry with the fact that I was caring for someone who was fully able to care for herself but who wouldnt.

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

Personally? Financially?

It feels weird to answer this question. Finances are something I am pretty much in charge of now. I am 16 and my income is what we live off of. I think we are all affected personally. Over the years, I have become a mini version of my mom, which is not a good thing. Ive got a lot of things to twist back into shape and figure out.

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

Dont be afraid to ask for help. Take time for yourself, even if its only a few hours every week. Talk to people! friends, relatives, anyone you trust. Counselors are good. Counselors are very good. Just find a safe place for yourself.

How Have You Handled The  Anger You May Feel Living With HD? 

What Has Worked Best For You?

I have yelled and hit and refused to talk. I have turned it against myself and into depression or into denial. Dont do that. It gets too confusing and it hurts. The things that have worked best for me have been food, writing, talking, and sleep.

Also, if I can get away from the situation, by all means, I do. It gives me some time to cool off and think.

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


Everything. I am afraid of upsetting her.


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

Shes not. I dont think shes mentioned it in literally years. I honestly dont remember her ever mentioning it at all.

It makes me feel like Im all alone in this confusing thing. Like Ive done some-thing wrong, or its not acceptable to associate with HD. It distances my heart from her even more.

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

First of all, Ive prayed a lot. When I feel like I cant get anywhere, I pray. It brings me peace to tell everything to God uncensored. Ive written a lot of letters. When I was in fifth or sixth grade, I started writing letters to people I didnt even know dance teachers in Tennessee and Georgia. I needed to share with someone and it seemed safe to send my life off in an envelope never to be seen again. Ive written to them now for six or seven years. Lots of letters and at times a drought of words. Ive never gotten a letter back, but when I see them they thank me for the letters and it feels like someone cares, even if they dont understand.

I've talked to a therapist and become very attached to ice cream and stuffed animals. I tend to stay super busy too.

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 number one form of support I would fall to is others in the same situation...as well as fellow NYA members.


What I love most about conventions is within the group of young people, statistically, half of us will get Huntington's. But there is a very comforting feeling that no matter what happens to any of us, the others are always there to support.


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.




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


Anytime. I don't care if its three oclock in the morning. And if you need someone and can't find the words, just call me. I understand. Just make sure to tell my mom its important if I'm asleep or she

won't wake me up. :) And don't feel bad! I'd want someone to do the same for me. Okay?