the future

'' Josie had been telling me I could easily have a few more decades(without loosing my marbles) but I  thought she was just feeling sorry for me and  not telling me the truth but then I met up with Amanda's lovely mum in law who said the same thing. That was also her instinct and she's know and worked with people who have it. She a psych nurse in TO ...so......

believe I will have a few good decades ahead so I think I will go back to using  

anti aging cream:)
and sun block

and not ever start smoking

and eat really good for me food

and have a calm food enviroment and try to elinimate as much stress as I can
also that book you bought me Jenny it really is encouraging me to have as they less stress better food
thanks

and do my dammnest to have Bonnie with me every day


and  buy uggs that I will outlive


love you guys very much thank you for being my daughters

love mum

This is what I emailed them the other day Jenny said it would make a good blog .
I finished the book about HD called 'The woman who walked into the sea.' Written by Alice Wexler' it really helped me to understand the history of it and to wear the badge of HD  as a blessing . The twitches  I have she writes about .

The last paragraph from the book  she writes...

Milwaukee, HD  Society of American annual convention, 2007
See that willowy young woman in a bright red dress and matching lipstick who dances already showing the twitches and grimaces of early HD:the grey haired woman jerking back and forth in her wheelchair, arms flying , head flopping; and that skinny young man in the backward baseball cap who shimmies and shakes out on the dance floor as  if he doesn't have a care in the world, who at the age of 18 found out that he has the abnormal Huntington's gene and carries this knowledge with grace and strength . As we dance this dance of St Vitus, this double dance of illness and of cure, the movement of chorea blend with those of hip hop, salsa and rock and roll. Later  when I am no longer surrounded by people with Huntington's I look at the still bodies near me -and- for an instant- I find something is missing.

whoops meant to put that part by Alice Wexler in quotes but for some reason my computer is arguing with me
that it's for now
peace and love to you all
Kath

what a month lots of challenges

not only of the HD kind but the normal(normal ? what's normal when you have HD?)

Went to the swallowing clinic and speech therapy at UBC I was hoping they'd be giving me some new exercises I  could use when my brain and lips aren't working together . They said no it's just the progression of this disease . They did test my swallowing different things and gave me advice for meals and how to avoid choking.
They did say again  that even when I can't talk I'll still be able to sing so that is very cool.


Emotionally had some challenges this month ..need to keep the positive stuff going I do want to live  as long as I can so I need to surround myself with good stuff

I think the blue moon must have impacted  the people here too lots of craziness this last week..

David passed away
we all said good by to David - in different ways---- it was very hard he was such a healthy vital man who enjoyed life and for him to suffer the way he did seem so very wrong.

as always I am blown away by the kindness of friends and family

I have to keep my eye on good stuff not the things that do impact me but hanging on for a cure so I can drive again and have a life again. All I know is that I do the best I can to hang in there...

I want to learn more songs, eat more muffins , laugh with my grandchildren ,  learn how to crochet,  go out for coffee with friends,  going to Mtl next summer so I have a goal to stay as healthy as I can

thanks again for all the kindness and good thoughts
love you all
Kath