Speaking Out ~ Living With HD

Joe - At Risk

Home | Index | Guestbook/Tell A Friend


Joe At~Risk
No one is authorized to use any portion of this response
without the express written permission of the author.
Joe was 27 years old when he responded to this questionaire.  He is married and has one child at list.  They live in Oklahoma. 

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

The hardest thing that I am dealing with would have to be watching my brother who lives with me. As you know he is at risk and showing many signs.


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


Not really I had plenty of chances to finish high school and go farther I just made bad choices.


What Things Do You Do To Help In The Care of an HD parent? 

Do You Feel This Is Fair?


Well I did a lot to help care for my father before he passed away. From taking him to the bathroom to feeding him, really just about everything I helped with. 


Was it fair? I don't think there is much that is fair when it comes to HD, but it did not bother me one bit to help. We were able to keep him at home

until he passed.


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

Personally? Financially?


Well it affected me socially because although I was old enough to do what I wanted, I had to be there for my dad so that took most of my time.  Personally it was just hard seeing my father get worse and worse. Financially I did ok.


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



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

What Has Worked Best For You?


This is a tough one Jean. Unfortunatley my response to this one would not be the best advise so we'll forget this one.....


What Is The ONE Thing In HD That You Are Most Afraid

To Discuss With A Parent?  Why?




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


Can't offer much help with this one either my mom was always willing to talk about anything.


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





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


I have not been 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.




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


Yes, I would be happy to talk to others in the same situation.