Welcome to my blog

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.

Up the creek

Up the creek
From my patio

Tuesday, July 22, 2014

Friday, July 11, 2014

Sunday, June 15, 2014

My Brother's Dog Fin

Wednesday, June 11, 2014

More photos from ALS walk 2014.

Sunday, June 8, 2014

Walk for ALS

Thank you for all of your support. 

Monday, May 26, 2014

On the way back from my eye doctor, I stopped at the entrance to my apartment garden.

Sunday, May 11, 2014


These photo were taken by my care worker, Kristine. Spring 2014.  

Sunday, April 20, 2014

Tuesday, April 15, 2014

On my way to the dentist in the rain. Along the way Tess took some pictures of Spring. 

Sunday, April 6, 2014

Monday, March 24, 2014

I am hanging in there....

Monday, March 10, 2014

ALS-linked gene causes disease by changing genetic material's shape

3-D changes in DNA may lead to a genetic form of Lou Gehrig's disease
This image shows nucleolin (green) scattered throughout the nucleus (blue) in a motor neuron obtained from induced pluripotent stem cells generated from the skin biopsy of an amyotrophic lateral sclerosis patient. Credit: Jiou Wang, Ph.D., Johns Hopkins University.
Johns Hopkins researchers say they have found one way that a recently discovered genetic mutation might cause two nasty nervous system diseases. While the affected gene may build up toxic RNA and not make enough protein, the researchers report, the root of the problem seems to be snarls of defective genetic material created at the mutation site.

Monday, March 3, 2014

This is our writing group celebrating our 8th anniversary. It is amazing that we have stayed together 8 years. We really enjoy each others company and discussions.

Thursday, February 13, 2014

My trip to Cavalia Odysseo . Thanks to my friend Lyn I got VIP tickets and had my picture taken with some of the performers.

Monday, January 27, 2014


I want to give you an update on my condition. After spending 4 days in the hospital in mid December, I have been well. On February 3 I will have a new care worker... and because change is difficult for me at the best of times... I really hope it all works out. As many of you know I enjoy the snow and I am sad to report that we have had very little. However we are very lucky on the south coast compared with back east. I am writing this on my new eye gaze. It is amazing technology and I will post more about it later. Lucky for me, I live in a vibrant city and I will enjoy whatever I can. Lady Ga Ga is on my calendar for May and I have other events planned. So life goes on for me despite ALS. I hope all is well with everyone.

Monday, January 6, 2014

This is a photo from Whistler taken by my friend Maggie.

Wednesday, December 4, 2013

My eldest sister Cheryle in 1944.

Monday, November 4, 2013

This picture was taken in 1896. The little girl in front left is my Grandmother and the parents are my Great grandparents . My grandmother is 4 years old .

Monday, October 21, 2013

Monday, October 7, 2013

My first love

This is me when I was about 19 with my first love Sugarfoot.

Wednesday, October 2, 2013

Catch me if you can . 

We are so fortunate.

Tuesday, September 3, 2013

These are some of the things I enjoyed seeing at the Market last week.

Thursday, July 25, 2013

From Granville Loop Park, we saw many tourist buses on our outing. it was a gorgeous summer day.

Tuesday, July 9, 2013

You can see me in the background going along south Granville. It was a warm day with a cool breeze. I enjoy shopping with my care workers. 

Tuesday, July 2, 2013

Those with ALS redefine what it means to be alive

(CNN) -- With the tap of a toe or the blink of an eye, those with ALS are redefining what it means to be alive.
I have to admit it took some time to come up with that line and believe it---to have that kind of positive outlook on this nasty deadly disease and the future.
Just a year and a half ago, my mother, Myrna Malveaux, 69, was healthy. Our family's matriarch, she was the one who was the life of the party, the trusted confidante but town crier of all family secrets, the glue that held my father, me, and my three siblings together.
When I was told she had ALS I honestly didn't know what it was. But then my sister described it to me over the phone and I had to pull over the car. It's a fatal, fast-moving neuromuscular disease that would paralyze my mother limb by limb. First robbing her of her ability to swallow, then speak, move and breathe.
When that reality set in, I spent many nights in my home, crying on the floor. What enabled me to get up was that my mother accepted her fate with a strength and grace I'd never seen before. In anyone.
When she began choking on her food, losing her ability to swallow, she got a feeding tube.
When she lost her ability to walk, she got a motorized wheelchair.
When she could no longer speak, she picked up a word board and started spelling out her conversations, still telling my father what to do.
And finally when she lost her ability to breathe, she got a tracheotomy and ventilator to stay alive.
Which is why the notion of what it means to be alive, for me, has completely changed.
I've met people like former NFL New Orleans Saints player Steve Gleason, who now, at age 36, with ALS, is completely paralyzed. He uses eye-tracking technology to open doors, send e-mails, and tweet by blinking his eyes.
I've also met Augie Nieto, the founder of Life Fitness gym equipment. The 53-year-old Californian is running a corporation, communicating and raising millions of dollars for ALS research, by tapping with his toes.
So you can see where I might get my inspiration in telling their stories.
Don't get me wrong, I know it's a devastating path to travel. Someone described it to me as "imagining yourself, sitting in a chair, and being completely duct-taped head to toe, with only your eyes left open. That's what it's like to have ALS."
It robs you of your physical abilities but it leaves your mind and spirit strong.
Being alive looks different. It becomes all about your emotional connections to those you love.
My mother smiles when she sees her grandchildren, her eyes light up when you walk in the door, she relaxes when the sun shines on her face. These days our family is just about hanging out.
Very little is known about how people get ALS. In 90% of cases it just happens out of the blue. It's considered a rare disease, in part, because patients don't live long enough to be counted. Right now there is no cure.
I hope by sharing my own experience, as well as that of others, we can learn more together.

Monday, July 1, 2013

Happy Canada Day!

Trying out the new door.

Monday, June 17, 2013

Soaking up some sun rays with my new scarf .

Thursday, June 13, 2013

These are photos from my friend's garden and on my travels.