after the clinic

at the clinic they tested my brain and my  walking over and over  I finally said 'my brain is too tired I need a rest'
I had to learn to accept this that I have it and that they didn't make a mistake and that I really can't drive.
I said ok fine I'll put a big "h" on my forehead as I was too embarrassed before when my walking  was off or when I'll fall into the car. Now I proudly say 'I have Huntington's '.....

Josie was a big help she talked to them about things I didn't understand and  when I needed it held my hand..
First the social worker, neurologist, geneticist then psychiatrist ....honestly the last one was the hardest .
There is no cure I may go loopy or not ....
I guess I need to even more than I did before be in the now...I'm on the waiting list for assisted living not exactly where I thought I'd be at 60 ...tho I hope that I don't need it and they say 'well you are a miracle you just stay in that condo.'
that's what I hope

my smart daughters

one fixed my blog site and the other is taking me to the Huntington's disease clinic which  from now on will be known as the HDC ..
a little nervous scared of the unknown

I think we have 4 appointments tomorrow


thanks for the humming birds Jenny..


kath

Huntintons disease and eye liner...

I think I really must be losing my marbles along with my driver's license - I have Huntingtons not Parkinsons.
For one thing you hear more about P than H and I guess I was tired last night when I posted it .
I had my daughter check and she didn't even notice anyhow having lots of pain today as well so will forgive myself.


kath

my first blog

My dear friend Louise and my Dr suggested I start a blog about my new life with Huntinton's not sure why but given this a new diagnosis( a week ago) and I'm still reeling and feeling confused.
Maybe they know I like to talk but will anyone hear this out in computer land?
I am no longer allowed to drive and I am only 60 - so much for visualization - I had this idea of me in my 70's and  80's with a convertible, blasting Celtic music on the cd player, lavender nail polish.
I have to sell my car now- get a little scooter thing I can take into grocery stores geez.
Of course before I knew what was wrong I was driving my car into a lot of well sidewalks and pillars so I should have known I just thought I was a lousy  driver.
That's why I can't take a photo of it for Craiglist too many scrapes including the indent of someones license plate.
I told my daughters and I told my friends, family and Dr---I will get  through this will all the love I'm feeling from everyone, cups of tea, my knitting, my books, music ...
I used to play guitar, perform, teach guitar sell real estate and I had to quit all that because  of this crazy pain I have and folks I thought at least when I got this  diagnosis last week I'd be finally have an answer  to the pain but it's not even remotely connected.
One of my  friends says she understands  finding out I have Huntington's and she sees how strangely I walk she said she know how upset I am as  she felt the same way when she found out she couldn't wear high heels anymore because she has arthritis  in her feet and she is 70!!!!
I was steaming !
The day I was diagnosed on the way home from UBC I was drinking a beet juice and thinking to my self why am I drinking beet juice , why do I  try to do yoga and walk and eat well   and make myself look nice and put eyeliner on and so on to find myself with this  at the age of 60.
My daughter came over that night and held me I still haven't really cried yet..much.
My daughter and I went to our Dr the next day I said the same to her what the heck is the point of taking care of yourself if this happens ? What is the bloody  point?
I'm still confused but did go see my dr again yesterday   I told her as long as I wear eyeliner that means I have the will to live
anyhow don't really know how this works
Kath