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
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!