Is it just me or is it all of us with HD?

Time seems to go differently. It's as if when I do something that takes 3 hours it feels more like 6 ...very s-l-o-w------------------so I will now say I live on HD time :)

I had to do a few different things today, dentist etc but pushing a walker does slow me down or is the HD o r is it the lack of sleep from my body constantly moving.
Or maybe it's a combination of it all.

Also today when I was crossing at a red light I was so slow the light changed before I got to the other side so a man in a van honked his  horn at me. I  really was shocked here I am doing the best I can a big smile on my face so when I turned to see him telling me hurry up I said with a smile 'kiss my ass'.
I will not put an Irish curse on him I will not put on Irish curse on him---Jenny warned me but I was mad.
Also I'm wondering what the luck of the Irish is- it seems to me not so good...
Really glad Carmen taught me how to knit it is keeping me sane.

I got a Christmas card from my friend Jan in OS today - she suggested not buying any glass - my brother also suggested getting elbow pads and have paper dishes. Thanks  I will take that under consideration.

Today when I was getting groceries though I was reaching on to the shelf on the freezer, sent a few things flying so I reached for them and smucked my face so hard on the glass door my glasses pushed into my eye ball so I couldn't see out them on the one side..
Good thing I can laugh at myself ..
Looking forward to having Jenny here next week
She'll protect me from the man in  the van and the glass door in Thrifty;'s
that's all for now
Kath

candy canes, crappy days and magic

Ok I was feeling sorry for myself today - had muscle and joint pain and the normal HD stuff like not being allowed to drive .....
My cousin called I said ok I'm  having a rough day she said well everyone has days like that (really?!)
I said but I have 3 things today going on with my health and I have to go do some errands in 2 degree weather and not being able to drive........

So I dropped off cat food Bonnie the brat cat can't eat to Bosleys for them to give to the needy animals.
Then I picked up a parcel ---thank you Maureen----
Then I went to the grocery store to pick up a few things and while I was in there somehow with this HD things go flying out of my hands like the little basket-not even sure how I do things like that.
I walked down the aisles somehow with the walker the little yellow basket from Thriftys on the seat of the walker.
After I emptied the groceries onto the counter I went to put the  basket down but it went flying out of my hand and landed on the man  in line behind me. I said 'sorry' but I don't think he heard.
Oh well maybe there should be special HD shopping hours where it's acceptable to knock things over and drop things.
Last week I saw the  as the  woman at the assisted living place put it 'I'd be lucky(!) to get assisted living room. It was like a cell - but maybe worse than a cell just a narrow cot, counter, microwave, bathroom that's it no room for anything else.

Anyhow today as I was walking back from the store feeling very sorry for myself a  bus slowed down beside me . I was cold, wet , achy, tired I was thinking strange the bus is slowing down there;s no stop for half a block. I turned to look at it and there were lights flashing all over it - instead of 601 it said 'merry Christmas' the bus driver was dressed like a reindeer and as the door opened Mr and Mrs Santa reached out to  me and passed me a candy and said 'Merry Christmas'..
I just about cried - I was touched(well even more touched than I was before ) ok now I do believe in Santa and hope and magic.
As always my journey is made so much easier surrounded with love and support of my friends and family
Kath

lists lists and multi-tasking

Was talking to my friend Noreen the other night and I  was telling her I was trying to figure out which list to cross off first, the Christmas list or my bucket list...

Also it's  impossible to hold an umbrella while you're pushing a walker and flirt....actually there is no way to hold an umbrella so I realized why all the old people pushing walkers in the rain don't look too happy cause their groceries and they are wet.

Every day it seems there are new challenges- today was lets see how many groceries then glasses I can drop.
I guess this is normal for me now. When I'm at the store I drop my purse a few times, send things flying around me .

Today after I walked my groceries home I was putting yogurt in the fridge and somehow dropped it on bottom door tray breaking it and sending everything flying that had been in there. Then was putting my dishes away when a few dropped out of the cupboard and somehow smashed everywhere on the counters right into Bonnie's food and water on all the clean dishes in the dishwasher, on pretty much everything.
After I got that cleaned up I was just looking at the floor and started to turn and somehow landed on my back in front of the door with my arm behind my back. I knew Josie was coming back in 2 hours  but it really scared me til I was able to get up .
Shaken me up is what it did I guess.
So after all breaking and dropping of things and falling I guess I am ready to go into assisted living but I really want the one that has the ice cream bar.. the one I hope to get into I go see on Monday.
Then I get assessed by a physio this week as well.
Every day I get I have to learn how to roll with the punches and adapt to new challenges.
I guess what I used to be able to do, drive, drink a coffee, talk , sing I have to do this with a walker....
Multi tasking for the HD challenged:)
I'm sorry I still make  myself laugh
Still haven't had a meltdown yet(just wait it should be a mighty grand one)
I'm 3 weeks behind on my Christmas list and I think I'll skip the bucket list for another day.
I need to get cracking on all the knitting I'm supposed to be doing but this darned walking to the store for groceries takes up time.
that;s it for now
Kath

walkers , wind and getting lost

IWell I'm still using  the  borrowed one and getting used to navigating curbs and doors that don't have an automatic opener and finding there are certain things someone with HD can't do like open a door with walker and holding a coffee:)

I was feeling a little sorry for myself last week  and really wanted to go to a craft fair downtown Vancouver.
I really don't know Vancouver at all. I mean if it was downtown Mtl or Victoria no problem but I don't think I've ever been 'downtown' never mind on a bus with a walker.
So I get ready, credit card, eye liner,  book(hurry up Judi I'm waiting for the next one), yarn, lipstick, loonies and toonies for the bus,  fabric bags to  fill with goodies I planned on buying.
Check.....
I go down the street to the bus got in front of the bus he yelled 'back up ' I thought he didn't want the walker on it so I turned around and the woman behind me said he needs room for the ramp.
Well I didn't know I've only been using this walker for a few weeks and in my previous life I had a car dammit.
I got on the bus sat up from with the other old folks and students who are too lazy too walk to the back of the bus. Got off the bus a little frightening when the ramp moves but shoot I 've had enough taken I really want some independence so I kept at it.
One thing I forgot was that in any part of Vancouver just don't ask where something is because you'll either hear 'no English' or they say '10 blocks that way' and the next person says '10 blocks this way.'
The other thing I forgot was my map  of downtown Van.
I got off the sky train feeling like an adventuress - downtown  all by myself.
It only took 20 minutes to find the Convention centre - but actually entering when you're in a walker is another story. Walkers don't  work on escalators so a nice fellow who worked there said 'take elevator 2 to the 3rd floor, get off go down the corridor to another elevator then get off on the expo floor.'
Now because I have HD my little brain freezes  when I hear too many words like that that don't even make sense.
I saw some other people heading towards the elevator so I asked if they were going to the Craft fair , they said yes so I followed them.
Had a great time met up with Carmen and John and picked up a few things - over 250 crafters from all across Canada even met up  with some people from Mtl.
Poor John rolled some yarn for me that my cat tried to eat.

One big bonus with having a walker is getting the big clean bathroom stall -yippee -who knew?
Coming home I got so lost I walked around absolutely exhausted trying to find the sky train station. I ended up walking for about 40 minutes -only one person would help me she was in a wheelchair and said 'follow me' which was tricky she was going quickly in that things and I  was so tired had to run with the walker to keep up to her . At one point I thought maybe she's taking me to her gang and they'll murder me but I was so  tired I didn't care - by then it was dark and none of the streets were family.
Finally we found the sky train station - I got on it was rush hour and yes most of the seats were taken by men and listen when you're tired   with HD  and clinging to the walker and the rail it's hard. I glared at a man and said ' I need to  sit.'
Got on the bus to come home and the bus driver pushed the button to let the ramp down - it didn't work so he carried my walker down and very gently helped down the steps of the bus.
Beween that day and the next day - I thought I'd walk m y walker to get some groceries but forgot to check that we were having a wind warning 100 km here in Tssawwassen !!
I was wondering  why I was having to push the walker down with all my weight...
Days like that you wonder why you put eyeliner on the wind just blows it off.
I mean it makes your eyes water with 100 km winds ....
When I get my new walker I have to figure out a way to have a coffee cup holder my shaky H hand has been spilling way too many ..
I think that's it for now
Kath

rambling about luck with the walker and lipstick

I have a borrowed one until my real - fancy - walker that will  be easier to match clothes and lipstick with.
It creates a whole other issue for shops that don't have automatic door buttons like the little boutiques I like to shop in.
I try to always think of things to be grateful for but been having a hard time with this HD....but I think I figured a few out.

 Now how lucky am I that not only is the grocery store and drugstore within walking distance but the boutique where I like to buy gifts, a clothing boutique, bookstore, Starbucks so I will have all sorts of new adventures with my walker .

Another thing I'm very grateful for is not having to deal with changing the clock in my car when it's  fall back time :)!! I just used to leave it but could never remember if it was ahead or behind.

Another  thing I'm grateful for is the fact that winter is coming so when I walk home from the store with ice cream it won't melt..

Funny having 'something wrong ' seems to bring out the best and worst in people - lucky for me that 99 % of the  people around me are amazing - supportive and kind ...
so I sam truly grateful for that

Kath

walkers and lipstick

Still not sure I want  this HD - had to walk up to the ins co where I get my car ins with my plates.
Sad day for sure it's hard too to take plates off with HD..:)

My car looks odd without the plates and then I had to empty the car. I've had this car since Kerri was a baby and I'd drive over from Nanaimo to see her and Keegan.I have 7 years worth of cds, cds that have fallen apart ,  inserts that have fallen out, blankets, shoes, one glove. batteries Josie asked me to take to the recycling place, 2 old lamps been meaning to get new shades for them, extension cords, 2 bags of rocks  to paint on, hats, pens, dead candies, old blood tests I never went for, maps, grocery lists, too many of those,  straws, a lighter from my smoking days, 2 chairs, my yoga mat I think that;s it.

Josie and someone else came this morning to fit me for  a walker so now I have one on order called 'xpresso---cappuchino colour.'
They left one here for me to use til the other one arrives well geez I 'd rather have my car back.
The thing I hate the most is not being able to relax at night when I sit on the sofa and watch tv and knit my legs and body jerk around and it  drives me crazy.
That's all for now
Kath

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