the upside of it..rebel with a cause,

The been lucky enough to be talking a lot with with Jenny and spending time with Josie.

Jenny at equinox told me she wished for me is 'when HD makes me fall that with  the  good karma I have  that I  bounce right back up'. Good one for the season of balance with my unbalanced body.

I am blessed with my girls...

Not allowed to be ditzy anymore Jenny told me. I told her can't help it (  too much stuff in the 60's )whoops always hidden behind . I am smart she told me so I have to believe that.
I did some really dumb things the other day so figured I could blame the HD ..I did.

Every night I think of all the things I am grateful for I never have  a self pity party . Jenny  told me I need to  no matter how I feel to make sure I walk an extra block or  walk a little faster so when there is a cure I'll be in good shape  for it. The hardest part of the day is morning I have to force myself to get up..very tired but what can I do ? Switch bodies with someone? Any volunteers out there?


The other day Josie ran in a race for HD a fundraiser on a trail in the cold and rain and she placed first! So proud ....I took pics.

2 things I  learned the hard way I shouldn't drink tea at my computer -the other is  not to  be walking  with a bowl of cereal ...Josie told me I need to be in a place with laminate floors she is right.

  The   gift of having  HD diagnosis means I know what I'm fighting..

Went to a HD support group  starting to get to know the people behind the diagnosis .

Still happy to have run away from asst  living and living with the Bonnie I will never ever go back again .. don't have enough energy to cook so  open a lot of tins of things and spend a lot of time at a deli  buying soup they make great soup ..also a lot of time at Blenz and Starbucks . Been  8 months I've been in this place it was the right choice ...

Had a great time with the kids last week Josie had a bonfire at her lot also went out with them for sushi (I hate sushi)..but it was fun to see them..

very lucky to have them and Jenny and Josie ..and friends and family... blessed

so peace love  to all  think that;s all for now
love kath

post Montreal with walker

well it seems timely to blog about what's been going on lately ....

I flew to Mtl courtesy of a friend and had a great time seeing friends and family but was taken aback at how much pain I'm in these days ...I need to accept this is the new normal .

Robby my sweet little brother picked me up at the airport in Mtl so good to see him after 2 years! He helped me get set up in my hotel room with my computer and all ..

The next  day - very hot and humid - my friend Terry Saba picked me up - we've been friends since we were 4 years old so it 's always special to see her. We have a routine when I'm in Mtl - we go visit our mutual friend's mum (Janice Blue who died of CF at the age of 32) . I get flowers and Terry buys pastries then we go visit her in her little house still the same we;ve been going to for 58 years and for 58 years Mrs Blue with her gentle soul and soft voice opens the door for us.

The next day I hopped a train with my walker to see my dad - my cousin Eileen picked me up from the train station and took me out for lunch . Then she took me to my dad's he lives on the 21st floor of a building where we had a tornado watch ..I was freaking out a bit . My cousin Tommy then picked me up and drove me to the train station .  Got to see quite the lightening show from the train I forgot how incredible the skies can be there . Was in massive pain from sitting on the train for  too long.

On the Sunday Robby picked me up and we headed out to Laval to see Poochie and Doris - Tommy came from Ottawa with smoked meat(to die for  ) , St Hubert BBQ, and 2 guitars so he was the man !
Had a great day at the Pownalls , catching up - eating and singing .

Terry Saba  took me to old Mtl to one of my favourite restaurants Jardin Nelson - so lovely there what;s not to love? The same day Glenn Bertie and his daughter and girlfriend

The second to last day my cousin  Pat  had organized a gathering for me with her sister Pam , brother Chris, daughter Elizabeth with her adorable son Oz ..that was amazing catching up with my family.

I was in so much pain I thought I;d leave early ...now Jenny has promised me  next summer she's going to be my assistant and drive me every where which would make a huge difference..

Came home to flowers and card and balloons and a very happy cat - seeing my old home and friends and family in Mtl did my soul good and now I am back in what I guess my new home is ..

that's it for now kath

om.......finally at peace..

Been too busy to blog moved 2 months ago into an apt - so happy I have Bonnie the brat cat with me -
I can eat  what I want when I want - I have a bath tub and gas fireplace - washer -dryer- dishwasher- etc etc...

When I go to sleep at night it's peaceful and it stays that way-from my living room I'm looking at trees I have lovely verandah - I sit there with Bonnie.

No more chaos at mealtime - I set the tone for my meals  ...

Since I was diagnosed this is the first time I am truly at peace I needed to have control of my surroundings, sounds and food at asstd living I had none of that . No more locked doors and  having to sign out..

My Dr is a few blocks away - the vet is a few blocks -there's a Starbucks right around the corner- a book store a lovely new market.
I;ve seen lots of Josie and the kids - made Easter dinner for Josie since I moved in lots of love and magic in my kitchen also  came out of the broom closet as Jenny words it.

I;ve   been to a HD support group meeting and going to one tomorrow ..it was strange in some ways  but great in others.

The day  after I was diagnosed I couldn't drive anymore which was a tough one but I  saw my car the other day parked down the street here..including the dents I put on it!!Whoops .......
In one way I felt bad I miss driving like crazy on the other hand I thought I'm lucky I'm out of asstd living and I live in a beautiful bldg- I have my cat so I can't complain...

A few times   a week I have help  doing things here - oh and I have an electric wheelchair  still a little afraid of it...
Looking forward to when Jenny moves up here too I miss  her so much  ....

that;s it for now
kath



I have wo

haven't blogged for awhile

I think things are taking longer than in my old world . I swear it's true was taking to Lynn tonight about something this winter she said that's 2 months away I said  'not when you have HD.'

ok I 'm  really trying to once again be positive but things happen today a woman in the drug store was sighing impatiently looking at her list and not able to find the item in that aisle  I felt like saying to her
'you know what hard is ? Pushing a walker not allowed to drive being fitted for a wheelchair in 2 weeks,  living with a bunch of old farts at asst living , not being able to cook and so on.

Anyhow Jenny can't come for Christmas but I know she'll be here next year for sure..my little minou ..that girl and I can power shop like you wouldn't believe..

Christmas eve bringing my guitar to Josie;s new house - sing with the kids and Josie is making the big meal then for us. The next  day going over early when the kids open their gifts ..
We're making new memories for the kids and this first Christmas without their granddad I want to fill the empty pockets in their hearts with love , music and new memories .

Went  to the HD clinic with Josie  2 weeks ago - 3 hours of  questions and tests. I 've lost 7 pounds  they wanted to know why I said because the  food at asst living is terrible..:) They didn't laugh.
The good news is that they think they'll have gene cell therapy 5 years down the road.. I have to stay healthy but still no cures yet..

Went to watch the kids in a Christmas concert at their school yesterday  so sweet their little faces and voices love this time of year the magic - the music the kids excitement. had lots of unexpected treats and  visitors ..Thanks Linda (candy) and Lynnie(haven;t opened it yet)  and liz...(haven't opened it yet)..

The thing I find hard is the pain -  all night I dream I'm in pain then I tell myself to wake up - I  won't be in pain but when I wake up I am - hard to deal with.

That's it for now as always am very grateful for my family and friends and even strangers who smile and say hello. I am thankful I may not be able to cook anymore but  I  can still enjoy food , the amazing clouds we see out West here, that I have 2 daughters and 2 grandchildren more precious than anything.. I love them so very much.  I get to see Bonnie everyday  but still plan on getting an apt with her.
I am so thankful I can move my arms and read a book and pat Bonnie and hug my grandkids(not in public they tell me ) we all love each other I am blessed
Kath

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

the HD seems to be  creating multiple one liners ...I ;ll get to those in a bit

I've been getting adjusted to living here at kin village - the people are all great who work here - most of the people who live here are good people but a few make me weary -the whiners and the loonies.
The food I will never get used to but the thing that really get me is  how much I still miss Bonnie.

I see her every day for a few hours and that is still not the same and when we live together .
 I miss having her do things to make me laugh as laughter is a bit on the thin side here.
I miss how she jumps on my keyboard when I 'm on the computer .
I miss how she sits on the kitchen table watching me eat and how she waits til I've just gone to sleep before she jumps on the bed and startles me then curls up in my armpit.
She's a rescue cat and the first few nights she slept with me she had her 2 paws around my wrist all night and didn't let go..
Now she likes Keith and Josie and the kids  but I guess she's a one  woman cat ...

I had the nurse from Delta --she is really cool she's a MacDonald- she brought me hope and a hug and smile which I can always use.

ok one liners courtesy of my HD whacked out brain......

I fell into a wall the other day I looked at Keith and said 'it's just one bruise after another.'

trying to figure something out the other day at the lawyers I said 'I think I have a black  hole in my brain.'

the leading cause of death with HD  is trauma to the head when Jenny was here about 6 weeks ago I was hanging crookedly onto her onto her arm to walk to the car. I said to her 'is the leading cause o death trauma to the head because the family gets fed up and gives them  a little shove.?

the other night I was looking in the mirror before I went to sleep  and I said to myself 'I'm going to miss you when I 'm gone'. ok that cracked me up
guess I like my own company...

also I was wondering if God laughs at jokes

I realized playing guitar was hurting too much  =- so I grabbed my autoharp and I dropped it so  instead of doing damage to my autoharp I'll stick to the guitar.

Josie sang with me at asstd living last week for the other inmates -- so nice to sing with her again
I was listening to Cradle hill by the Once and thought that would a perfect funeral song(mine) so I called Jenny she agreed it's a good idea so somehow I record this and get all my family and friends on it then ..also I like Jenny Lindbo "redbird ' song...
Guess I have more than one but I want to sing them now is that so diva-ish  of me?
So have to figure out recording me then get my girls and grandkids, Peter Little and the gang from Kathy's kitchen ,  Bryan Leckie, Lynn,  Jeannie, Tim Harrison (?) would you ? sing with me  mean?

I am still the same old Kath just living in a different body
hmm
deep like the ocean
I still believe in the goodness in life  my friends and family, laughter  muffins and music and good old cup of tea
Kath