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

times does fly when you have HD

I think maybe  I should count my life in dog years . I know I'm worse than I was last year and I have no idea how I'll be next summer so I think from now on I'll count my life in dog years.

Went to the HD clinic for another assessment this week - they checked my brain and my meds and my walking. I had to walk one foot in front of the other well I don't think even real people can do that it was tricky. I learned  a few things like when you have this the singing  part of my brain will be the last to go. That made me happy I mean if I have to have something when everything else has gone I'll still be able to sing to my daughters and my  grandchildren.
One thing that bothered me quite a bit is seeing a woman there who doesn't use a walker or live in assisted  living she lives alone near here and according to her friend sits home alone each day and  feels sorry for herself and cries .  The woman had the googly eyes you get with this, was very skinny and I couldn't understand a word she was saying . It scared me  - I know at some point I'll end up like that but what I was thinking was who will visit me  ? If I look too scary I can still  hear and understand so I'm hoping my friends and family will still visit me.

Been settling into life at assisted living  getting used to the quirks of everyone who live and work here and getting used to talking loudly. Some days I am quite spilling with my food (crackers went flying up my sleeve the other day) I said to every one guess I can';t say 'nothing up my sleeve' because there are crackers.
I dread the change of season -it means white shirts and pants and I'll make a mess of no doubt I seem to be having a lot of trouble  getting the fork from the plate to my mouth without the food falling off. Though I like to live dangerously and  so will eat carefully this season:)

I still make a lot of HD humour jokes  and I think that as long as I can keep a smile on my face and love in my heart and a muffin  and cup of tea,  see my friends and family I am a very lucky woman ..


Now that Keith is nearby  he picks me up so I can see Bonnie every day and he's been helping me do all the things I was having such a hard time with like getting groceries or  watching the kids do their activities. What a big relief ....

that's all for now
Kath