I run because it helps me feel at peace
It lets me shut down from the rest of the world
I need to take a break from the decisions that I have had to make lately
Deciding if I want to get tested for Huntington's disease
has been a decision that has been weighing on my mind for some time now
I remember I was overhearing my mum talk to a relative who wanted to come to visit
I don't think I was surposed to hear the conversation because she mentioned something about my dad
I knew something was up, I remember talking to her about it, trying to get it out of her
and my mum didn't want to tell me, she didn't want to worry me
but eventually she did and I just remember going to the book store and looking up what Huntington's disease meant
and reading the paragraph that I had a 50/50 chance if my dad ended up having this disease
I have been to a few conventions and I hear young people talk about as soon as I get 18 I am going to get tested
I got to know, I got to know
But I always thought, why do you have to know?
Why not try to put it to the side and try to live your life the best you can
and really only test if you absolutely need to
you can ever go back, once you get tested you can't go back
December 3rd is my 2nd appointment to meet with my doctor
to go over the exam and get the blood test
I think about it every day
I think about being in the waiting room
I think about her opening the door
Calling my name out, and going in there
and I am so scared that if I answer something wrong or do something odd she will think that is a sign, that's a symptom
This isn't fair but what is fair?
I'm grateful that, even if I did test positive I know that my life is worth something
I know I have made a difference in people's lives
For me that is worth it, if I can tell people my story so that things may be a little easier for someone else
That's really why we are here
Huntington's disease is a family disease
It's a neurological disease, it impacts the person in many ways
cognitively, emotionally, psychologically
This disease has impacted my family unbelievably
This disease can start at any time
If you accidently trip, spill a glass of milk, whatever it may be...
if you check things 5 times to make sure the door is locked, you wonder is this the beginning
when I was 17 and we first found out about my dad
the doctor told me if I got pregnant it would be ok if I had an abortion so that is something that is weighing on me
the difficult choices, if I was positive, and I got pregnant and we found out it was positive
then would you have an abortion? I don't know if I could live with myself for that
I want to have kids
I think I would be a good mother and I know my husband would be a great father
But we just got to get creative and we got to pray, figure out what is the best thing for us
I would love to have a baby one day
He is used to tell me, people with HD can get quite repetitive, so he used to tell me over and over again that he loved me
He wanted to make sure that I knew, I am grateful because those are the times I remember fondly of him
Hi dad
Just wanted to come and bring you some flowers
I miss you so much, every day
and I know that you are looking over me, helping me through
this very tough time, I know you wanted to be here to see me get married, to see me have a family of my own
I want you to know that you are in my heart and this is the reason why...
I have made my 2nd appointment for the test, I always wonder what you would say
would you tell me to get tested or not?
I know you were so scared, that it would actually happen to us
But I know that you will be watching over me when I go in there
I just have faith and I'm staying positive and that is is going to be ok
They are going to find a treatment... I love you so much
You are always in my heart
This is my best friend, Melina. Staff: nice to meet you
My mum, Barbara, and husband Jeremy
So your results came back...
and you will not develop Huntington's disease