Speaking Out ~ Living With HD

Lindsay-At Risk

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Lindsay At~Risk
No one is authorized to use any portion of this response without the express written permission of the author.

Lindsay was 14 years old when she responded to this questionaire.  She in Ohio and is at risk for HD.

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


The hardest for me would definitely have to be having to walk on eggshells around my HD affected parent.  Not knowing what to say, or if it's something I feel is necessary to be said, what kind of reaction I will get to it.


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


No, its not affected me with my education.  Thankfully my father isn't at a state where it causes me to be absent and such.  Actually, I think it's helped me because school work is a priority for me now more than ever before and I've actually done better.


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


Well, I do whatever is needed care wise.  This was more with my grandfather rather than now my father but then I was younger so my caregiving was affected, but I still did whatever I was able to do.  I would help around the house, help with dinner, laundry, whatnot.  Actually nothing more of what a "normal" teen would have to do but probably more often.


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


My parents care affects me socially in that I can't really remember the last time I had a friend over.  It's almost frightening to have people over and what they're going to think of me by the time they leave. 


It's just more stress for me, actually.  As well there have been many fights with friends who say things like "I hate my parents" or "I wish my Mom/Dad would just die".  That's one of my biggest pet peeves is people who take things, especially irreplaceable things like parents, for granted. 


To me personally it feels (and Shana said it best at convention) as if I've been an adult since I was 5.  My childhood was pretty much pulled away from me.  And financially there's been some tough times all around, but not specifically towards me.  Yea, I've been told "no" a few times to this and that, but who hasn't?


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


I would say that if you haven't gotten some help, GET SOME!  After the help process has been initiated, just talk.  Let it all out!  If things continue to get worse, more violence and what not, I would consider thinking about finding another relative or someone

such as to live with. 


You don't deserve, NO ONE deserves to live like that.  And I know it may be hard, a little awkward, or maybe an emotion I wouldn't know about, but if you can say "Yes, I've lived in an HD home." then that's telling me you're pretty strong to live with that and that you're strong enough to get through just about anything.


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


Well, I've done a lot of different things when it comes to "anger management".  I've written poems, vented to understanding friends, and I've gone to our teen support group that we have here in Ohio.  That helps the most to be able to know that I'm not alone in this thing...and yes, the NYA helps too but when there's someone right there with you that's the best support you can have, especially when there are hugs involved :).

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


Well, one thing I would say that I'm most afraid to discuss with my parents are their status.  What doctors have said, what neuro's have said, etc.. 


It actually scares me is why.  I don't really want to know "Yes, he's on this and this and this when it comes to meds, or yea, he has to get this or this done."  I don't want to know what they're doing to possibly hurt him or actually speed up progression. 


I want my parents to seem "normal" in every aspect although I know they're far from it.  But I do it anyways for THEIR own support. 


My mother has Multiple Sclerosis so I do the same things with her as I do with my HD affected father.  Though they're different diseases, you still have to treat them as parents and as humans and I've realized they have needs that SOMEONE needs to nurture, so why not be me!  I figure I'm one of the best people to do so...their daughter.


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


My affected parents aren't so much into discussing anything as my step-parents are.  I talk with my step-parents to see that, hey!, we do have the same feelings about things.  It's amazing what I've

found out by just listening rather than complaining how bad that I've got it.


What Things Have You Done To Help

You Live With Being At Risk For HD?


Well, as I stated before I go to a teen support group.  It's awesome! 


Our social worker, Barb Heiman, she arranged the whole thing.  The parents bring the kids, Barb takes us kids to another room and the adults sit together and there they have their own support group.  It's wonderful for both the adults as well as the kids!


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'm at risk.


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, once again back to the teen support group.  Barb Heiman is a WONDERFUL social worker!  She was at the convention and did a few adult workshops but with my experiences with her as, I guess you could say, a "teen counselor", she's been absolutely amazing! 


(Ms. Heiman - Ohio-Central )


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


Definitely!  Anyone can contact me at my e-mail!