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

again been way too busy to blog

this moving and pushing a walker back and  forth, making sure Bonnie is ok and packing and unpacking and  all the details that moving involve compounded  by doing everything with a walker instead of a car.

I had friends and family help out and I'm almost done packing at the old apt....down to  5 hours of stuff left.  Still have to do all the calls too ...that involve moving( like tomorrow - calling telus to give them hell for  charging me for the next month when I had called twice to cancel.
Also they want me to lug all the shiny boxes and little black things and the remotes to the post office of course! A piece of cake when have a walker!
SO that I 'm getting my friend Amanda to help me with that on Thursday and a few other scary things I  can't handle on my own.
My friend Helen is here right now with Bonnie and she is doing so many things to help me including  driving me to Ladner to get a microwave I need to take to PR.
In the meantime I have to eat my words from my last blog -- I was really having a hard time my first here was frightening and lonely. I kept seeing Bonnie in the shadows .
Well assisted living as it turns out is like staying at a hotel - they make my meals, my bed and check on me every morning and night . The aides and nurses are  really kind and I like 99% of the people here.
I must be getting used to the food because I east every scrap -always hungry too with the HD.
It's almost like a hotel except they don't chocolates on the bed !
The other night I was sick I  walked down to where the nurse is and had a chat with her - I really feel safe here.

I sit at a table with 3 other women well it turns out they are sweet ladies - they are they look me in the eye and have  love in theirs like mums to me . My mum has been gone 32 years now and these women say to things like 'make sure you take a taxi it's too cold out .' They're all hard of  hearing and some have altered taste buds so some of the conversations are like this ' what is the soup like ... I don't know what I'm doing later ...no the soup ...oh it tastes like beets well it's actually dessert it's strawberries...' and so on I make sure if they care to tell them  what they're actually eating .
The fellows at the next table are the loud ones I warned them I have supersonic hearing and can hear everything- they said 'well be better tone this down' but they forget.
The old lady next door to me is 97 and has been teaching Tai Chi for 30 years - she is amazing no walker - great posture and she;s teaching me in the hall every morning .
Now this week moving to PR for 2 weeks with the Bonnie til Keith gets up  here....that's why I'm frantically packing in my old place .
Josie has arranged for movers and is staying at my old apt while they get my furniture loaded up on  a truck and I 'll Bonnie for a few hours here til they are ready to  drive to PR that's when she and I will be in this lovely cosy home the  painters are painting like crazy right now Josie also arranged.
My goal after Keith gets up here( can't wait Keith for you to see the house ) is to stay healthy til there's a cure.
In the meantime I don't have to stress about getting groceries in my walker - Keith will be living in our place with the Bonnie, I;ll be living here in assisted living . I do understand now why my Dr and Josie recommended it  - it's good for someone like me who really does need help but not so much and I feel this huge wave of support from the people who live and work here.
So far Lynnie - you did a great job of packing thank you much. Down to last 20 boxes and I always get panicky when I think I can't finish  but I always do.

Helen is taking me to PR tomorrow to get  do some errands with me and I want to show her a few things she's never been to PR I think she'll like it.
Jenny is settling into her new little apt and posted a sweet  youtube video of her deaf cat knocking things over and Jenny is giggling in the background she has no idea how that does my heart good to hear her voice. I am very proud of my girls and love them and my grandchildren very much.
Can't wait for the first time we hook up in PR - I can stay there very limited time because Assisted living guidelines but I love that place so much it does my heart good.
Oh and in my usual black humour I said to Keith last night..I haven't changed much,;' hahahaha right
Even the fellow at London drug s today said he noticed a diff after only a few months.
SO folks even tho  I';m on a slippery slope lets hope theres lots of  laughter and love and music and kindness and ice cream and my cat ..
The women who work and lived here have certainly made that difference...
It's all been amazing really
that's all for now I am so danged tired

kath

honey I wish I wasn't home

well I didn't know I could cry so hard and my first night here. After a long day having to get up at 7 to pack some last minute things I moved into here.
Josie had  been here since 9 for me setting up my furniture and making my bed all nice and cosy and so on putting my (way too m any ) clothes in the closet.
I had my first lunch here, sitting with a few 90 year olds. Canned veggies and  white pasta . The women were nice but still not what I thought I'd be lunching at the age of 61 and yes I am the youngest mostly women in their 80's and nineties. Some of them even if I smile at them they ignore me and others very sweet .
I unpacked a few boxes went in to dinner(canned veggies and white rice) one of the workers was yelling at the 90 year old woman at my table .That did not sit well with me I asked her if this was how she normally operated and she said yes. Seeing as I had only been here a  few hours I was tentative to say anything but next time I hear her yell at anyone I'll give her hell.
I went to my  room and realized there was no Bonnie to curl up with I started crying and called jenny and Josie they both called the nurse to come and check on me . Gee even the  nurse can't help my sad heart.
I had to get up early yesterday morning for the man who was setting up the cable for my computer and tv . He was such a help and was moving some furniture around for me to make it easier. He also unwound my bag of massively knotted wires. I meant to but didn't have time he was so patient with it but understood how that really helped me as his dad has Parkinson's . I am trying to set him up with Josie so got his phone number - he seems like he has a very kind heart.  He's going to help me set up my dvd and vcr when I  bring them over  so will make sure Josie's here :)
I am very very tired from this move still have a lot of unpacking to do  . I was starting to have another meltdown last night and my friend Linda came over and talked with me gave me advice.
She's a gem.
Talking to Jenny right now -- she is dealing with a lot also   - I have great faith in her wisdom  on her path in life.
Feeling  lousy today but still want to go see Bonnie I"ll take a bus boy do I miss driving .
When I arrived yesterday the first thing she did was jump on my walker and I pushed her up and down the hallway.
Then I curled up on the bed my cat at my feet she gave a great sigh and fell asleep.

Just had lunch with 2 of the only fellows I've seen here - and a woman who had a stroke and at least had a few laughs - turned our place mats into paper airplanes and  threw them at each other.
Yep good thing I actually had a good life .
I  asked the fellows could I sit with them for dinner they aren't as serious as the other women I sat with and I need all the laughs I can get .
Having pain today too but have to walk to the bus to go see Bonnie
well that;s all for now

Kath

the no name blog and feisty attitudes

now that made me laugh for some reason (small things amuse small minds ) or maybe it's the HD attitude 'take  advantage of this opportunity to laugh it may not pass by too soon again.'

I am looking at everything around  my place that has to be sorted and packed - very confusing at the best of times. I have to go through everything and I mean everything, bins of sheets, clothes I made for the kids when they were little, recipes, music,  paint,  patterns,  frames ......get the picture? Not to mention the abundance of clothes. I am mildly ADD but just enough that I'd rather do anything than sort through stuff I have a hard time reaching.
So that;s why I took my walker for a walk, got a salted caramel hot chocolate sat outside Starbucks with my book, patting strangers dogs.

Yes I'm still happy to be alive still happy I can walk still happy about everything except the thought of sorting. I wish I had a twin who do things like that for me . I have crazy waves of fatigue it feels sometimes  like my brain is detaching itself from my body. I will not let this disease beat me as far as attitude goes . I've always been an observer and as a child I'd watch women  who had nothing to complain  a bout but would make great dramas. Then there the mothers (like mine and Mrs Blue) who were lovely feisty gentle souls. No matter what happened  to them they were strong and kept going. Also my grans had rough lives but they never complained . I look at my daughters who are going through  pretty brutal times right now . They haven't given up they keep going , my granddaughter as well.
I  look at my grandson always a smile on his face, he's a gift too.
I am so lucky to have my family all of them even when they tick me off (well I do have walker rage according to Josie) but that's ok..
I'd rather be out having walker rage than curled up defeated on the sofa feeling sorry for myself.
Well the only time I have walker rage is when someone beeps at me to hurry up .
I look around and would still rather be me than someone else- I  love my friends and family and feel that support and love  lifting me all the time...and I am thankful
that's it for now
kath

well I've been thinking...

the one thing that (aside from being able to bring Bonnie my delightful cat ) that was bothering me was that I  wouldn't be able to create things from nothing.

When I was in high school remember the excitement of forming a folk group, organizing a coffee house at RHS ,creating a fashion show to raise $ for the choir to go to new York. I just walked into a  trendy boutique in Alexis Nihon and asked if I could borrow their clothes for a good cause.
When I explained why they thought I had a lot of guts so asked  me to work there part time(I was 16 or 17 at the time) during one of the fashion shows I organized for them National film board asked me if I would do the same for them they wanted to do a documentary on models in the 60's . So I played the role of fashion coordinator and was the FC for that film. It was shown in theatres that summer.
When I moved to Owen Sound I created a choir of neighbourhood kids, then moved to NB where I created a choir of teens....then I moved back to OS and created amongst other things "Bread and  Roses' coffee house to raise $ for the women's crisis centre, a few different groups all with Peter Little my musical buddy, including Kathy's kitchen .

Even when I was living in Nanaimo I had nobody to walk with so  I created a group we met every day for almost 5 years.
I had been feeling at such a great loss thinking what the heck I'm too young to be doing nothing with my creative brain  and I didn't want to lose my spark for life.
Well between what my daughters said and a friend Ruth said a light finally went off in my brain. Guess I had to hear it 3 different ways(my perfect excuse I have HD and it takes time to sink in) so Ruth said to not get rid of my  craft supplies etc she said maybe I can teach a class in crafting or guitar or just sing and I will for sure start a Scrabble group there (there is none) well this is all assuming I'll be allowed to do this so hope it all works out for me then that creative part of my brain and that side of my spirit that needs  to create all will be sparking along quite nicely.
Thanks again everyone for the support and friendship and love, as well as that group of women I connect with every day and they have listened to me moan about this disease at the start they've been wonderful too as well as my real life family and friends.
peace , love

things move quickly

in my little world --3 months ago I found out I have HD. Things just keep moving too quickly, one day I'm driving the next I'm looking at assisted living places or so it seems.

I'm supposed to be getting prepared to move into assisted living but I've changed my mind. I don't want to live where you can't have animals or have a bath. I don't want HD>>
Had a meltdown on my bd --cried and cried for ages I guess I'm allowed hadn;t done it yet since I was diagnosed. Both my daughters do their best to be supportive in different ways. And Keith thanks for bearing the brunt of my fed-up ness.

Is that not too much to ask of the universe when I am only 61?
Had to get groceries yesterday in the snow trust me walkers and snow don't get along hard to push when they're empty never mind full.  I used to complain about walking and driving in slush it;'s even harder  to push a walker.

Sometimes I'm ok about this and can accept it whatever 'it' is . I wish though my DRs had some sort  of answer or treatment or could say 'this is how it will go' it;s all the question  marks that I wish had answers.
All I know is that I will at some point deteriorate but I don't know if it's going to be next week or 10 years from now.  I wanted to be  an  85 year old woman, still singing and baking and driving and have a dog and now my world is shrinking.
Still putting on the eyeliner and lipstick and still laugh at myself when I'm not crying -oh and someone in the slush and snow yesterday I was trying to walk to a taxi and a fellow in a white van  yelled at the taxi driver  for stopping where he did for me. I was so fed up and mad at people who don't have patience or honk at me so I banged on the side of his van and yelled 'kiss my ass,;'
Maybe I need to get that as a tattoo with 'kiss my ass; and just show that instead, on my wrist maybe.
I'm not sure how it would go over in the nursing home:)
At least I still have a sense of humour such as it is
Jenny told me I needed to blog but this blog sounds confused which is what I am I guess
kath