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

Tuesday, September 30, 2008

A chance meeting and my reflection


I was out on one of my power chair excursions today and had an interesting conversation with a cheery young man in a wheelchair. He looked about 22 and approached me in Chapters Book Store. I wasn't really wanting to engage in a conversation--too absorbed in all the new novels and gifts--but there was no escaping this fellow. He was fascinated with my Jazzy power chair. He asked me how comfortable it was, how fast it went, etc. It didn't take me long to realize he was a street person living in a shelter on the down town east side(drug addict part of town). His wheel chair was manual and looked to be a freebie of 1990 vintage. He expressed with great pride how comfortable his memory foam cushion was. This was a new and welcome addition for him. As he chatted I scanned his clothes, hair and glasses. The big plastic frames must have come out of a church donation box, his clothes although clean, didn't fit properly and his long hair was probably not trimmed for some years. He asked me what happened to me. I said, "ALS disease." He replied, "Oh no!" I returned the question and he explained how he'd fallen out of a second floor window and due to a spinal injury, couldn't walk. He wanted to chat all day but I explained how I must get going since I wanted to take some photos before the clouds moved in. As I left, he shouted, "What are you going to do with that chair when you get a new one?" I wanted to say, "Give it to you my buddy." But I said I would give it to a needy person at the ALS Clinic. He smiled and said, "Great. Just make sure they're not a druggy--they'll just turn around and sell it for drugs." I came home, set my expensive camera on the counter and reflected on how lucky I am and how much I have. The shelter will get a bigger donation this year.

Black humor for emotional survival

Sunday, September 28, 2008

Contemplation



As I contemplate the road ahead, I reflect on writers and singers that were an influence in my life-- women who encouraged me to do whatever I dreamed. One song I always remember was sung by Helen Reddy. Some of you may remember her--and the song. I have posted "I am Woman" as Today's Song. I'm so appreciative of all women who fought for women's rights or acknowledged them through their music. For me, they made a difference.
When I was 22, with a good paying job, no bank would give me a mortgage. They always asked for my husband's stats. I didn't have a husband so they smiled and said, "I'm sorry." I persevered. At 23 I found a bank manager who was willing to give me a chance. With $3000 down and a mortgage of $15,000, I bought my first home. The rest is history.
Please listen to Helen Reddy--one of the women who gave me strength then, and gives me strength now while facing this demon called ALS.

Saturday, September 27, 2008

Not me


The day you see me doing house chores in my wheelchair is the day you'll know I've lost it. I've never been domestic so if you have to shovel the place out one day it's because I ran out of money to pay the cleaner--and that may be sooner than you think.
Shine up those shovels!

Some times good things come out of bad


Don't do this!! Your keyboard doesn't like it. However, after realizing I had killed my keyboard, I ordered a new one. Wow! The new MAC keyboards are amazing. They are soft touch, silent, and very sleek looking in their aluminum skin. I should have spilled the coffee months ago.LOL.

Friday, September 26, 2008

Thursday, September 25, 2008

This is my future


I drenched my keyboard with coffee this morning so I must start to consider special devices to help with weak hands. My friend Libby in Scotland suggested this one. So clever. I think a golf umbrella might work better.

Wednesday, September 24, 2008



My new hospital bed arrived and I slept like a princess! I love it. No more back aches. Cathy and Barb made it up for me last night so I wouldn't have to sleep all scrunched up. Since they are both nurses I had pristine corners.
With my new bed my nightlife is good. LOL.

Tuesday, September 23, 2008

Granville St. Bridge


I was up early so just had to share this picture of the morning sun on the Granville St. Bridge. Sunshine makes me high.

Monday, September 22, 2008


An equinox is the moment in time (not a whole day) when the centre of the Sun can be observed to be directly above the Earth's equator, occurring around March 20 and September 22 each year.
Here is a picture of Butchart Gardens in Victoria during early Fall. Quite spectacular! Happy Autumn to everyone.

Saturday, September 20, 2008

The exciting adventures of Ken and Karyn










The pictures are not in order--rather scrambled like my mind these days. However they're a sampling of our adventure. We planned on taking more photos but I forgot to charge my camera. Ken got the ultimate privilege of carrying my dead camera for most of the walk. Not just anyone gets to do that.
The first shot is of my best discovery--wheelchair accessible burgers and fries. Yum.
The second photo is of a very attractive woman in her wheelchair considering the approach to a space age bridge. It was a piece of cake. The background is the new Olympic Village under construction for 2010.
The picture that follows is of the construction site as well. These buildings will house 2800 athletes and officials. The last photo is the new permanent lounge chairs on the seawall. I considered trying one out but there wasn't an available construction crane to lift me back out.
It was a great adventure, and if you haven't walked the new seawall addition linking both sides of False Creek--you must. It's a beautiful part of this gorgeous city.

Thursday, September 18, 2008

Do you think this restroom is handicap accessible??
This is one of many photos my brother and I took on our adventure yesterday. I still have white knuckles from our trip over the Granville Street Bridge. He has the craziest ideas some times. However, I always have a good story to tell after he visits and I enjoy the challenges and his company. I'll post more pictures on my next blurb. The excitement mounts. LOL.

Monday, September 15, 2008

Painting by eye movement on computer



Courtesy Peggy Chun /

St. Francis Heathcare System of Hawaii
Artist Peggy Chun has amyotrophic lateral sclerosis, ALS, also known as Lou Gehrig's disease, and can only move her eyes.
This painting was done with eye movement alone.
What an inspiration!

Basket on Granville and 8th


Saturday, September 13, 2008

Thursday, September 11, 2008

Thank God It's Friday!

Well--it's almost Friday. It doesn't make much difference to us retired folks but I thought I would post something in honor of those who still work and contribute to the Canadian Pension Plans. You are appreciated and we always think of you on Monday mornings. Thank you for working.

Saturday and Sunday are shaping up to be pretty spectacular--clear bright and sunny. It's still summer!
Mark your calendar to celebrate the Autumn Equinox. September 22nd at 15:40. I can see a few trees on Granville Island beginning to turn those vibrant shades of red and gold. There's nothing better than a September Morn.
You can listen to the song under videos.
Have a great weekend.


Monday, September 8, 2008

Accidents happen


Well it wasn't quite as messy as this, but very funny. Cathie, Judy and I went to Joey's on Broadway for lunch. I had asked to be moved since my wheelchair couldn't fit under the first table. When the waitress came with our water she misjudged and kerplunk-- swoosh-- splash-- right onto the table and into my lap. I was drenched. She apologized and came running back with a handful of napkins to clean up--a beach towel would have been more appropriate. We were laughing so much that I hadn't noticed the water dribbling down the side of my wheelchair. If you hadn't witnessed the act you would have thought, "Poor woman in the wheelchair--she's had an accident." Well the final outcome was that we were moved to a sunny table where I could dry, we got 3 glasses of free expensive wine, and we all had one heck of a good time.

Sunday, September 7, 2008

Share the Care


Back in March many of you took part in a Share the Care meeting at my apartment building. It was a way to gather together friends and family who were invited to be part of my care team. We knew it wasn't necessary for me to have a lot of care at that time but there were issues we wanted to address. Also it was a way for friends and family to meet one another. Since that meeting there have been many changes and new friends have joined the team to help out. Next week my 5 co-ordinators are getting together, as they have in the past, to brain storm some new issues and reconnect. If there are any concerns or questions you might have, please email me and we'll put your request on the agenda. We'll be contacting you after the meeting if we need volunteers, information, etc. Hopefully we'll be able to arrange another "get together" before year end. I better start working on replenishing my wine cellar!!
For those of you who are not familiar with the Share the Care book, it is an excellent reference for helping anyone with a serious illness.
I'm loving all the sunshine, my new camera, auto door opener, power chair and of course my family and friends(pen pals as well) who continue to support me and create joy in my life.

Friday, September 5, 2008

Freedom!!



Finally--my automatic door opener is installed and working like a charm. I can run away any time I want to--or I should say "wheel away."
Life is good.

Wednesday, September 3, 2008

Another Inspiration





This is Steve-- a hero from my ALS forum. He is one of the most courageous guys I know. Not only does he cope with losses(recently his speech deteriorated and he can't be understood and his manual dexterity is one finger) but he continues to work on ALS projects and fights to stay as independent as possible. Using his knowledge as an architect and ALS patient he has helped bring a dream to reality. I have included a link under Videos titled "Steve's Dream." It is a MUST watch. Steve is 39, has a 22 month old son and lives in Boston. Thank you Steve for setting the achievement bar high--as you said in your own words, "I'm still rolling strong."

Tuesday, September 2, 2008

A little gem



I thought it would be good to post something bright and cheery. These are photos I took in Granville Loop Park. It is a small park just below me on w. 5th Ave. The purple heliotrope is so fragrant that it fills the air as I pass by on my power chair. I'm so lucky that there are wheelchair sidewalks throughout the gardens giving me access to this little gem of a park.

Monday, September 1, 2008

Some sad days too


It's important to express my darker days. I'm not super human and have some sad times. When I can't walk to the kitchen because of spasticity, when my left hand and arm won't do what I ask them to do, when my left foot sluffs and catches on the door sill, when my voice is having a slurry day and a receptionist can't understand me, when I can't pick up something that has fallen, when I notice new muscle atrophy on my legs, when a new symptom appears and reminds me of my fragile longevity, when I'm feeling fatigued and don't seem to care about anything, when I'm grieving the loss of better times--these things and more will bring me to tears. I mope for awhile. It may be minutes, hours, or a slump that lasts a few days. The best part is how much I learn from these events and my ability to focus on the positive and bounce back. My friends, family, counsellor, life experiences, all give me skills to navigate through the dark days and back into the sunshine. Today I'm in the sunshine.