Speaking Out ~ Living With HD

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Rhonda At~Risk
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Rhonda is from the Cincinnati area of Ohio and is at-risk for HD.

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

That I won't be able to take care of my mom, and watching my dad pace the floors, dad and brother are terrified and I can't take that away for them.

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

A little yes, but I will be okay there.

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

I am her main care giver, and I am fine with that. I realize my dad or my brother can not do it. It is a role that I knew someday I would have to take.

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

It really hasn't begun to affect me in that way at the moment, down the road I am not sure how it will affect those areas of my life.

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

I don't know.

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

I'm not so sure I have handled it. I don't allow myself to feel it. When it begins to creep in, I get distracted with other things. I keep busy or I go to sleep. I know I need to learn to deal with it, but not sure I can right now.

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

I don't know really, we talk about all aspects of it pretty openly. But I guess you could say telling her she is getting worse or is gonna get worse is the hardest.

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

Completely open. Relieved.

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

Nothing. I don't worry that. It might not ever happen, and I am not gonna allow to myself to worry over something that might never happen or if it does might not happen till way later in life. I will deal with that day when/if it happens.

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

N/A never been tested and I am not gonna be tested.

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.

Well, I haven't really connected with anyone local at this time. At one time when I was caring for my aunt, I did go to some support groups. But to be honest they were too far away, and I stopped going.

Would You Be Willing To Communicate With Someone Your Age Dealing With These Things? If so, please show how to contact you.

Yes. I am not sure I would be much help, but would gladly be a friend to someone who needed it. After all we can all use a few good friends, and I know it helps to know that you not are alone.