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, January 28, 2010

A ride on the new Olympic line

With a little help from my friends, I rode the rails from Granville Island to the 2nd Ave. Canada Line Station.
It's a sleek train and I have my own special spot to park. The best part is--it's free.
After we went round trip (10 mins.), we lunched and shopped at the market.
It was a good day!



















Friday, January 22, 2010

Eyes hurting

I'm having eye problems so won't be on the computer as frequently. I'm not sure if it's an ALS complication or something else. I've been to an eye doctor and will be seeing a specialist soon. It's so important to protect my vision and eye movement--as it's all I'll have to use for communication near the end of life.

Amyotrophic Lateral Sclerosis (ALS):

People with ALS are generally very successful operating the Eyegaze Edge. We have, however, seen limited eye movement in a few people with ALS, which made it difficult or impossible for them to perform the more complex Eyegaze functions, such as typing, on traditional direct-select Eyegaze keyboards. Several Eyegaze keyboards designed for users with limited eye movement are now making it possible for most users with ALS to continue to operate the Eyegaze Edge indefinitely. A common problem for users with ALS is dryness of the eyes. The corneas are normally moistened by tears, which are spread around by blinking. As the blink reflex decreases, the corneas dry out, and don't reflect infrared light very well. The Eyegaze Edge needs to see a corneal reflection in order to function. Over-the-counter artificial tears eye drops will typically solve the problem of dry eyes.


Thursday, January 21, 2010

Outta My Way! I'm Late for My Nap!

Wednesday, January 20, 2010

Olympics

The orange and silver structure is one of the many temporary buildings erected for Olympic award
ceremonies, security, volunteers, etc.
I can see it from my den window as it's located in David Lam Park, just across the water from me.
The "crooked building," as I call it, is The Erickson, named after the Vancouver architect who died in May 2009. There is a town home for sale in the Erickson--price--3.4 million.
Any takers?

Dancing


"Life is not about waiting

for the storms to pass...

it's about learning

how to dance in the rain."


Tuesday, January 19, 2010

Sunday, January 17, 2010

Friday, January 15, 2010

Creative Writing

Thursday, January 14, 2010


Chest Wall Pain. Pain of the front chest wall-referred to as Tietze’s Syndrome-is fairly common. Like any other joint, the cartilage joining the rib to the breast bone may become very painful; unlike other joints, it cannot be rested unless breathing is stopped. There is a definite sore spot (usually over the heart) and pressing on it causes great pain. This eliminates the possibility of heart pain which cannot be produced by pressing anywhere on the chest wall.

I often suffer from this pain. Because my breathing is laboured(my diaphragm muscles are weak due to ALS progression) it causes strain and pain. I cannot rest the joint where my ribs attach to the breastbone as long as I keep breathing and to keep on breathing seems like a good idea. I suspect some of this pain will subside when I start BiPAP(Bilevel Positive Airway Pressure). I've been putting off the inevitable as I'm slightly claustrophobic and know it will take me time and patience to adjust to the BiPAP mask. However, I'm not comfortable and like to be proactive so will make an appointment with the respiratory specialist and let him diagnose me rather than Dr. Ruddick. LOL.

Tuesday, January 12, 2010

Brrr Cold in Great Britain

My friend Libby, in Scotland, says it's VERY cold and icy. As you may have seen on T.V. they have been in a deep freeze. I expect the cattle are a wee bit chilly as well.
Here it is balmy and bright today. Perhaps Scotland should be hosting the Olympics!!

Friday, January 8, 2010

ALS & Augie Nieto









Watch this interview with a man(hero) who has raised millions of $$s for ALS

Thursday, January 7, 2010

Help from the stars

Recognize the man in the photo?

He's a great character actor.

That's Richard Kind. He was in "Curb Your Enthusiasm", "Spin City", "Mad About You" and a host of other television shows and movies.

"Yeah, very few people know my name. That's OK. I'm very lucky to do what I do," Kind said Wednesday. "My greater fame has allowed me the opportunity to work and do some personal projects."

One is Thursday.

Kind, along with the New York Yankees' Nick Swisher and retired New York Rangers' Adam Graves, are among the celebrities to take part in the Midwinter's Night Dream, an annual charity fundraiser to support the Amyotrophic Lateral Sclerosis (or Lou Gehrig's Disease research).

Some days--

Some days I feel like a cat thrown into water. I hate swimming but I have no choice.
This kitty doesn't look too happy either.
Thank goodness that most days are good.

Monday, January 4, 2010

In memory


I am sad to tell you that my ALS pen pal from Victoria passed away December 23rd. Cathy was a fighter and a great help to me on my ALS journey.
Photos of her beautiful Oak Bay garden brought me joy every Spring.
My condolences to her sons, loved ones, friends and PLM family who will all miss her strong presence and sense of humour.
ALS continues to take good people. Over 1000 Canadians die every year from ALS. WE NEED TO FIND A CURE.

Sunday, January 3, 2010

Baby food again

My neighbour, Sharon, picked up a babycook for me while working at Williams-Sonoma over the holidays.
It will be perfect for steaming and pureeing vegetables or fruit as my swallowing gets difficult. You can even put meat in it, but I'm not keen on mushed meat! How about you??

Saturday, January 2, 2010

Listen to the falling rain


The rain beads on the window like a falling spray of silver fireworks. Wind comes in gusts and I hear various movements of a choppy symphony.
Yes, I love the rain. The photo is the picture I saw on my window glass last evening. Tonight I will snuggle beneath my comforter as the rain beats down and I'll hope for a wind from the east so once again the rain will entertain me and lull me into dreamland.