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

Friday, October 31, 2008

My costume



I need a volunteer to dress as a witch and push me door to door. You need a large golf umbrella as well as your broom.
If I hadn't eaten as many kitty treats I would be easier to push. Also I'm getting worried about getting stuck in the neighbor's cat door when I sneak in at night to eat their cat's leftovers. My owner can't figure out why Fancy Feast Lean Cuisine isn't working.
It's fun to baffle humans. They think they're so smart! If I seem a little strange when you come to pick me up it's because I found a bag of catnip under the sink last night. I was bored so I ate the whole thing.

Thursday, October 30, 2008

Charlie Brown



Happy Halloween everyone! Don't eat too much chocolate and let me know if you see the Great Pumpkin.

Wednesday, October 29, 2008

Tuesday, October 28, 2008

I can sit at the table again


This is my new chair for dining at my table. I needed arms on the chair for getting up and down, swivel to turn toward my walker or table, castors to move myself close or away, and height adjustment to lower for fitting under table end. I, or I should say friends, placed a small carpet under the chair so I don't push away and scoot into the wall. It all works like a charm. Two friends put the chair together today amidst fits of laughter. I supervised and read the directions. It was a hard job.

Big challenges





As you can tell by the picture, I took on challenges much bigger than me at an early age. Now I'm much older and I'm tackling ALS. Thank heavens I'm taller, tougher and wiser.

Monday, October 27, 2008

Shopping in the sunshine



I had a superiferous day! A friend helped me go shopping for a new rain/wind jacket-- one that zips from the bottom as well as the top. This will make sitting in my power chair on blustery days more comfortable. We were successful at Taiga Works.
The day was bright with sunshine and beautiful autumn leaves. I had my chair fully charged and was up for the adventure along Broadway. My friend showed me all the ramps into coffee shops and the elevator to Home Depot, HomeSense and Winners. We searched for bargains, laughed about most everything, and got a healthy dose of vitamin D.

Saturday, October 25, 2008

Thursday, October 23, 2008

Cynthia Nugent: BC Achievement Award


Congratulations to my friend Cynthia!

Author Bill Richardson and illustrator Cynthia Nugent receive the 2008 Time to Read: BC Achievement Foundation Award for Early Literacy from foundation board member, the Honourable Iain Black at Panorama Heights Elementary in Coquitlam, BC. 



Richardson and Nugent received the award for The Aunts Come Marching, a sing-a-long story about a marching procession of musical aunts who drop in on a family for an unexpected visit. The Time to Read Award is a national children's book award for an author and illustrator of a book suitable for kindergarten students. The winning book is distributed to all BC kindergarten students and the author and illustrator each receive $7,500. For 2009, the deadline for submissions by Canadian publishers is March 15, 2009.


Read all about it!



Warren Buffet

Equities will almost certainly outperform cash over the next decade, probably by a substancial degree. These investors who cling to cash now are betting they can efficiently time their move away from it later. In waiting for the comfort of good news, they are ignoring Wayne Gretzky's advice: "I skate to where the puck is going to be, not where it has been."

Wednesday, October 22, 2008

Good Times



Life is pretty laid back these days. I'll try to spice it up and wiggle my toes more often.


Even the neighbor's cat is praying for a cure.

Monday, October 20, 2008

Choices


There are times in life when we have to make important choices. I often deliberate too long or not at all. Regardless of how we come to a decision we must live with the consequences. Just yesterday I was trying to decide whether I would continue using taxis or buy my own limousine company. Because I took too long with my decision Jim Pattison, the local multi millionaire, bought the limousine company right out from under my nose. Oh woe is me. Back to taxis--and reality.

Sunday, October 19, 2008

The lucky mouse



A friend sent me this picture and I thought, "How appropriate."
Many friends and family help me out every week. They change light bulbs, rearrange furniture, buy gadgets, send emails, give me rides, cook, laugh and gossip. They make my life bright and help me cope with ALS. I'm the mouse at the end of the chain who gets the flower. What a lucky mouse I am!!

Friday, October 17, 2008

My VGH visit today



For those of you who knew I was going in for a vascular ultra sound today, I want you to know that all is well. I had swelling in my left leg and my ALS doctor wanted to rule out a blood clot. After the test, they sent me home so I assume I'm not about to leave this world. However, I must say it was an ordeal to go to the hospital on my own by cab and with my walker. My muscles were terribly fatigued by the time I got home. In the future I'll relinquish this independent notion and have someone go with me and use a wheel chair when I'm there. I found it interesting that I couldn't go into the coffee shop as there were no chairs with arms. If I sat down I wouldn't be able to get up. I finally rested on a leather bench by a large wooden planter thinking I could use the ledge to help me stand. Well-- surprise! My legs weren't strong enough to get up with one arm. A passing angel(nurse) stopped to help me and we almost ended up planted together with the artificial fig tree. We finally made it and I was good to go. The nurse will probably have to call in sick tomorrow with a strained back. It was very frustrating in the moment but in memory quite funny. We must learn to laugh at such defeating incidents or the bridge will become crowded with potential jumpers. I shall sleep in tomorrow and hopefully get back some strength.


I believe in the Great Pumpkin--and Santa Claus--and the tooth fairy--and a cure for ALS soon.

Thursday, October 16, 2008

The moon from my window


I was amazed with the beauty of the moon one recent evening so out came the camera so I could share the moment.
The world is filled with magical moments. Sitting still and silent is when I often see the magic.

Gerald Lawhorn


Gerald Lawhorn passed away from ALS but leaves behind a wonderful legacy of ALS advocacy.
If you have the time to be inspired by a man who had an amazing attitude about his diagnosis please watch his video under today's song. Be patient--it takes a minute to load. 
Rest in peace Gerald.

Tuesday, October 14, 2008

Good Visit to ALS Clinic



I had a good visit to the ALS Clinic today. They're a great team and once again gave me helpful tips and information. My strength is less than in April but not progressing at a rapid pace. My OT at GF Strong had valuable ideas for my bathroom reno and the physiotherapist is setting me up with home visits. My shoulders are weak and freezing up so I have to get some stretching and ROM exercises. I'm fortunate that my speech therapist is a MAC person(like me) so all the computer devices I'll use in the future will be compatible with Apple products. I'm purchasing a new MacBook at the end of this month. It will be light for use on a power chair and easy for me to move with one hand. It's wonderful that I'm only 15 mins. from the Clinic and 10 mins. from my specialists at VGH. Oh--and the humorous part. I asked about going on a diet to lose 20 lbs, to make it easier for my caregivers in the future when moving me and I was told an emphatic "NO!" They do not like ALS patients to diet. It was sweet music to my chubby ears. Bring on the pasta!
Hope everyone had a good Thanksgiving.

Monday, October 13, 2008

I Hope You Dance

Sunday, October 12, 2008

Crossing the Bridge



This is the Burrard St. Bridge(beautiful architecture) but some of you may remember my white knuckle adventure with my brother crossing the Granville St. Bridge(I was on my power chair). It was a gutsy move on both our parts but a journey etched in my memory--and once it was over something to laugh about. I was listening to Elton John recently and his song about crossing the bridge seemed so relevant. It's a lesson to all of us who occasionally don't take a risk and regret it. Don't misinterpret me--bungee jumping and skydiving are not in the cards.
Elton gets the spotlight on my song of the day.

Saturday, October 11, 2008

Benny the Chatty Mouse

Story delayed due to writer's block.

Life Instructions

Thursday, October 9, 2008

Thanksgiving



We live in such a beautiful country--free and brimming with opportunity.
Our autumns fill our sights with color and our hearts stir memories of kicking leaves--or finding the biggest and brightest one on the block.
It is a time for reflection-- and how fortunate I feel to experience another Fall, another Thanksgiving.
I wish you all a happy and restful holiday weekend.

Wednesday, October 8, 2008

ALS and the Military


This is a photo of a fellow ALS patient who has now died. He is in the background of the picture and his buddy is up front. Congress has now accepted the connection between military service and ALS and offers benefits. However it's too late for some.
See the video on top right.

Tuesday, October 7, 2008

Some ALS facts

More than 30,000 Americans have ALS, according to the ALS Association, a nonprofit organization that supports ALS research and public and patient education about the disease. Around 3,000 to 5,000 new cases of the disease are diagnosed every year.

Although ALS can strike at any age, it usually appears between the ages of 40 and 70. Men and women of all ethnic and racial groups are about equally affected.

The disease attacks the motor neurons, nerve cells in the brain and spinal cord that control the body's voluntary muscles. As the motor neurons begin to die, the muscles weaken and shrink. Early symptoms of ALS may include unusual fatigue and clumsiness, muscle weakness, slurred speech, and difficulty swallowing.

As the disease progresses, patients gradually lose the use of their hands, arms, legs, and neck muscles, ultimately becoming paralyzed. They can speak and swallow only with great difficulty. However, thinking ability, bladder and bowel function, sexual function, and the senses--sight, hearing, smell, taste, and touch--are unaffected.

About half of people with ALS die within three to five years of diagnosis. In rare cases, a person may survive with the disease for many years (see accompanying article). The usual cause of death is failure of the diaphragm muscles that control breathing. Some individuals with ALS choose to prolong their lives by using a ventilator, but prolonged use of a ventilator may increase the risk of death from an infection such as pneumonia.

No single test can diagnose ALS. Because of the slow onset of the disease, it can be difficult to diagnose in the early stages, said Jeffrey Rothstein, M.D., Ph.D., associate professor of neurology at Johns Hopkins University School of Medicine in Baltimore. Johns Hopkins is one of the nation's leading centers for ALS research.

"We do a number of tests to rule out other diseases that might mimic ALS. Because it's a fatal disease, you want to be absolutely certain of your diagnosis. The patient is generally about 20 to 50 percent into the disease by the time it is diagnosed," he said.
How I love the grand old houses. Too few are left to admire but once in awhile I come across one in my neighbourhood and can't help but snap a picture. This one up on Birch was remodelled for a business. Bless them. I can imagine the days of horse and cart delivering ice and women trying to navigate the stairs in their long dresses. It wasn't an easy time but in my imagination it has glamor. 
Then came the time of "Little Boxes" and on that note I will make it the song of the day. Remember and enjoy.

Friday, October 3, 2008

Eric Lowen



Eric Lowen has ALS. He wrote a song inspired by the book "Learning to Fall--Blessings of an Imperfect Life" by Phillip Simmons. Eric hates ALS but has a lust for life which is evident in the video. He is a wonderful man helping others deal with the disease.

Thursday, October 2, 2008

We All Stand Together


To Rupert, Paul McCartney, my amazing friends, family, counsellor, doctors and anyone who helps me on this journey--I dedicate this song.

Wednesday, October 1, 2008

Emily Carr--an inspirational woman


"She experienced everything with uncommon intensity, a factor which fueled her frenzied periods of enormous output, yet contributed to her self-doubt which led to a lengthy and marked slowdown--some would call it a regenerative hiatus--in her painting. Nevertheless, she pulled herself up out of depression, came to ignore public disregard, surrounded herself with pets, sang hymns to her half-finished paintings out in the forest, and, at fifty-seven, won her way to her most productive and original period of painting, producing the works for which she is most known."

This woman was and still is an inspiration to me. After two heart attacks and one stroke she scooted around on a self made orange crate with wheels--just so she could paint. I often pass this sculpture of her at Granville and 7th and stop to reflect on her life and her spirit. Yesterday I took her photo as the sun warmed her face. Somehow, I think she would have hated being in the middle of the city, but here she is reminding us of the deep connection she had to nature. Her monkey, a pet named "Woo" seems quite content with all the attention.
Emily Carr passed away in 1945 at 74.
Two years before she died she said, "Don't pickle me away as a done."

I was so moved by the sunrise this morning that I had to share. What a wonderful world!