Welcome to my blog. I have had ALS for 10 years now.


Since I started this blog in June 2008 I've had amazing feedback. Family, friends, people from all over North America, Australia, Scotland, England, and places I can't recall, have commented, encouraged and corresponded. I had no idea when Cynthia taught me how to set this up, how much I would love posting and how many people would read it. I want to say THANK YOU to everyone who has helped propel this therapeutic exercise into a daily routine. All of you, both friends and visitors, are now part of my blog family. Welcome.

From Go Pro

From Go Pro
View from my living room

Thursday, July 31, 2008

Ahh, Maxine has such a positive attitude. I adore her. 
I've finally arranged to have a physiotherapist visit me at home. I can no longer balance or turn on the narrow beds they use in clinics. With some stretching and range of motion exercises I'm hoping to increase the mobility in my back, hips and legs. I also have an occupational therapist coming on Wednesday to discuss bathroom renovations re making the shower wheelchair friendly. Being proactive is so important. I don't "do" panic well.
My friends and family continue to help out with tasks, encouragement and fun. Thank you one and all!

Wednesday, July 30, 2008




A fellow ALS patient from Salisbury New Hampshire passed away. He was a hiker who snapped photos of beautiful landscapes on his travels. It seemed fitting that I recognize his spirit and talent by sharing a few of his beautiful pictures with all of you. The world has lost a creative eye.

Monday, July 28, 2008

I'll be living here soon!
Check out the scoop under Faces of PALS on right.
Click on "I want to be president"
I'll be the first Canadian US president.
Please vote for me when the big day comes.

Saturday, July 26, 2008


You win some, you lose some.

Monday, July 21, 2008


I'm a little tired today--too much partying yesterday. A chef came to my place and cooked a gourmet meal. It was a gift from a friend. 4 of us enjoyed delicious food.
I've been getting that lump back in my throat which appears to be some paralysis of the throat muscles. It makes my eating much slower but I can still swallow without choking. It's just darn annoying.
The weather has been beautiful so I hope everyone has been outside to soak up a few rays.

Saturday, July 19, 2008

someone asked--




A variety of cellular insults may intersect, leading individually or in concert to neuron degeneration, neuron death and finally ALS. A faculty gene (1) and excess glutamate (2) may lead to damaging free radicals (3), which can harm the nerve cell's DNA. Glutamate also may lead to the production of detrimental calcium, which can churn out its own supply of DNA-harming free radicals. The free radicals also may injure neurofilaments (4), proteins that serve as the skeleton of the cell. In addition, the immune system (5) may be involved in harming neurons. Abnormalities can lead to an accumulation of the toxic calcium.

Friday, July 18, 2008


The fireworks (Celebration of Light) start on Wednesday so I'll have to stay up or buy ear plugs.
10:30 is my bed time but perhaps with a swig of Geritol(do they still make it?) I'll stay awake.

Tuesday, July 15, 2008

I'm thinking of investing in a summer home.
This one is cheap and original in design.
I just may have to order it online. It would look rather nifty docked in front of the Granville Island Hotel. I wonder how long it will take to sail it here from the Mississippi?
This picture was taken from my balcony with my new Lumix camera(18x optical zoom). It's like Christmas in July around here.
Yes I will die broke--but with a smile on my face!
Life is good.

Sunday, July 13, 2008

This is my snazzy new vehicle. I sold my sports car and bought this jazzy red Ferrari. It goes like the wind and turns on a dime--well almost. My brother, Ken, took me out for a driving lesson last night. We went to the Cactus Club for dinner(Saturday evening--what were we thinking!?) and everyone got to go home with no missing toes. This morning we scooted down to Granville Island. What a gorgeous morning it was! I feel as if I've been given my wings back.

Friday, July 11, 2008

I'm a little tired these days but managing to get out just the same.
Yesterday I went on a shopping excursion and it took me forever to try on a few pairs of capris. Getting my shoes on has become a labor of love so dealing with my slow limb responses in a shop change room was a challenge of great magnitude. My friends are so VERY patient. I'm sure they will all become saints after my demise.
Today I had my modified barium swallow test at UBC. They didn't see any blockage or extreme muscle slowness. They agreed that my coughing is due to some weakness but with a few changes to my diet I should be fine for now. I can still go out for lunch. Yahoo!
My brother is arriving tonight and we hope to purchase a small power chair tomorrow for indoors and the occasional outdoor adventure. The new one will be much narrower than the one I have for 'off roading' through the park. Starbucks will be pleased to see me clearing the door frame and leaving the garbage container upright. They're so picky!
I have posted a new inspirational movie clip on the right. Click on "A Gift for You." Enjoy.

Wednesday, July 9, 2008


Last evening, at sunset, this was the view from my bedroom window. The old paddlewheeler was returning to Coal Harbour after a dinner cruise. This morning I was up at 5 and watched the sunrise. Many visiting boats, both sail and motor, are anchored in Alder Bay. They sleep so peacefully as the seagulls fight over yesterday's French fries along the boardwalk. It's impossible to be self absorbed in an illness when you see what I see. How lucky are we to live in such a beautiful slice of the world?

Monday, July 7, 2008


Kristina(niece) and Ruth(sister-in-law) were just here for 3 days. Ruth took me on a successful outing(didn't run over any toes) up Granville Street in my power chair. We got caught in a rain shower but survived. We had a great visit and they've now returned to their home in Nanaimo.
Friday I go to the UBC Hospital and get a special test to measure the strength of my swallowing muscles. I've had problems with a little choking so we're checking it out.
Last week I had a 'learning time' at the ALS Cinic(GF Strong) doing some voice banking. When I need a speech device we will mix some of my own voice with the robot's voice.
My friends and family continue to give and offer support--and I'm most grateful.
Hope everyone is enjoying this stretch of sunshine and taking time to relax and smell the roses.
Love to all,
Karyn

Sunday, July 6, 2008



ACTRESS: Hilary Swank lines up another strong role. BOOK IT

Swank finds another tough female role
The book: 'You're Not You' by Michelle Wildgen The buyers: Hilary Swank and Molly Smith By Josh Getlin, Los Angeles Times Staff Writer
March 6, 2008 The deal

Alcon Entertainment, on behalf of Hilary Swank and her producing partner, Molly Smith, options Michelle Wildgen's "You're Not You," a highly praised novel about a woman dying from Lou Gehrig's disease and a younger woman who takes care of her.

Saturday, July 5, 2008

Ben Byer dies


Ben Byer, actor and play-write died on Thursday from ALS. He was a fighter and dreamer and left an outstanding legacy in his autobiographical film--"Indestructible."

Friday, July 4, 2008

Some days one is simply glad to be alive. You want to sing out and share your joy.
I've added a little video under "Some beautiful lessons" that makes me laugh and describes the feeling perfectly.
I only wish I had been there.

Wednesday, July 2, 2008

No, this is not my most recent self portrait. She's a friend of mine who lives on the roof of the Coomb's Country Store. I had a pet goat once--got her at the farmer's auction--but that's another story.
On Friday, I finally get to do some work at the ALS Clinic banking my voice. I'm starting with important expressions like: 
"No"
"I'm hungry"
"Did you bring flowers?"
I had my first trial run with the power wheelchair on Friday.
There are now a couple of dents in the shop doors on Granville, but all in all it wasn't bad for a first outing. Many laughs were shared with my brave friend who walked alongside.