Speaking Out ~ Living With HD

Shana-At Risk

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Shana At~Risk
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without the express written permission of the author.
Shana was 22 years old when she wrote this an attending college in Wisconsin.  She is at risk for HD.


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


As a child the burden of having a sick parent was very hard. Currently, not having a mother to talk to in these crazy years of my life is very hard.


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


If anything, it made me try harder in school...one less worry for my family.


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

When I was little and my mom was still at home I did just about every-thing. At first it was just little things like reminding her where she put her purse. Then it turned into a 24/7 task, where it was not safe for her to walk on her own, but she was too stubborn to listen. Thus we always had to be around to help her get from place to place.

After she went into the nursing home, I helped my dad change her, feed her, etc. Believe me, there is nothing harder than changing your own mother's diaper. I feel this is all very fair. She brought me into this world and loves me with all of her heart. I only wish I could do more.

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


When I was younger and my mom was at home, I got made fun of everyday at school. The constant teasing caused me to come home and cry everyday. That did change over the years, but it is still awkward to explain to the guys that I am dating my situation. Some are very uncomfortable with it.


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


No comment offered


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

What Has Worked Best For You?


Every person needs an out. My out was sports. For some it may be art, music, writing, friends, etc. When I went to the gym and did gymnastics, my mind was clear from my problems and I had a great time.

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


It scares me to discuss my future and chances of HD with my dad, he has enough to worry about right now with my mom. I know he is scared, so I hate to bring it up.


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


My parents were incredible. From the moment my mom found out what she had, they both filled me in the entire time, and I am very grateful for that. My dad is always there when I need to talk, which at times, is quite often.


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


Get involved! I've always stayed busy and tried not to dwell on the negative. But for some, that is easier said than done.


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.


Obviously my other form of support would be my father. He has always been there for me, and I'm sure he would not change in my time of need.


The last thing that would help me would probably be a good therapist. No joke, there is nothing wrong with getting professional help.


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.


None around here...just me and Jake.


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