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

Monday, August 30, 2010

On Elizabeth in Los Angeles


ALS was unlike anything she had experienced. The more moderate symptoms and sensations — the yawning, sneezing, hiccupping — she could handle, but the involuntary fits of laughing and crying were a bit much. Tears were hard to explain to the clerk who simply wanted to know "Paper or plastic?"

One day she put a key in a lock and couldn't understand why it didn't turn. She pulled it out. It was the right key, wasn't it? She tried again. The lock had to be broken. Then it dawned on her: She had lost the strength in her fingers.

The disease became a hundred little battles waged in a losing war. She taught herself a new way to use a paper clip and light a match, and with the help of a speaking device attached to her computer, she could type and it would talk.

Eating was her first major defeat. As her tongue stopped working, she changed her diet to smoothies and oatmeal. Still she choked, and her doctor worried she might aspirate. A feeding tube was prescribed.

She missed her salads but made do, injecting a regular diet of Ensure and protein supplements into her stomach. Life, she explained to a friend, does not have to be lived in the extreme. "You can be fully alive by just being alive in your body."

Chocolate was a clear victory. If she tucked a Hershey's Kiss into her right cheek, lay down on her side and let it melt, she could still savor its sweetness.

Sunday, August 29, 2010

My youngest brother

After a long stay in VGH for a liver operation, Malcolm will be heading home to Kamloops on Monday.
Following a rest and healing he will start his second round of chemotherapy.
He is the 3rd sibling to have colon cancer in the last 4 yrs. Our Aunt and Grandfather died from colon cancer--it must be a defective gene we inherited.
I know he is a true warrior and will be back to work and on the lakes fishing soon.
When we were young we cut and packed cedar shakes together and always dreamed of winning the lottery--we're still dreaming.

Friday, August 27, 2010

Before and after or short and shorter


Susana has been cutting my hair for 20+ years. Since I can no longer get to her salon she comes to my home and tries her best to keep me looking neat and pretty(??).
We have talked through ups and downs, through laughter and tears. I consider her not just my hairdresser but a good friend.
Juan Carlos(Susana's husband) took these photos on Tuesday.

Tuesday, August 24, 2010

Any awareness is great--thank you Sarah


Thanks, Sarah Fisher and Dollar General!



From a press release hot off the presses...



FISHER TO CARRY THE COLORS OF "CAREY’S HOPE" AT CHICAGO AND KENTUCKY
by Sarah Fisher on Tuesday, August 24, 2010 at 10:07am
Indianapolis, IN (Aug. 24, 2010)-Sarah Fisher, driver/owner of Sarah Fisher Racing (SFR), announced today that she will be sporting a new look on the rear wing of her No. 67 Dollar General Honda powered Dallara for the next two races of the IZOD IndyCar ® Series season, but for a very special reason.

In January 2010, Carey Hall, owner of Hall's Motorsports Refinishing (HMR), painter for Fisher's team in Indianapolis and fueler for SFR since its inception in 2008, was diagnosed with ALS. According tothe ALS Association, "Amyotrophic Lateral Sclerosis (ALS) is aneurodegenerative disease that usually attacks both upper and lower motor neurons and causes degeneration throughout the brain and spinal cord. A common first symptom is a painless weakness in a hand, foot, arm or leg, which occurs in more than half of all cases. Other early symptoms include speech swallowingor walking difficulty."

Fisher hopes that by proudly displaying the Carey's Hope logo this weekend, she will raise awareness of the horrible disease and raise funds to help Carey and his family in their battle.

"Dollar General and SFR are one big team that works together and supports each other during times of need," said Rick Dreiling, Dollar General's chairman and CEO. "We stand behind Carey and his family during this challenging time and are committed to helping him win his battle with this disease."

"Carey and his family are a big part of the family here at SFR," said Fisher. "We are very proud of his encouragement and dedication towards getting through this disease and the inspiration he lends to all of us every day. Not only has he been a part of our team and our family, but the family he has will always be a part of our lives. I hope we can help him in a bigger way by getting the word out there and sharing with our sport the intensity and passion the people who support it, have."

In the SFR race shop, located on the Westside of Indianapolis, ALS wristbands are seen on almost every employee. "We're behind him all the way," said Fisher's crew chief, Anton Julian. "Carey has been a vital part of this organization and we're like a big family here. We'll do anything we can to help him through this battle."

Hall resides in Greenwood, Ind. with his wife, Carla, and three sons, Christopher (20), Colin (11) and Cruz (6). Please visit www.careyshope.com to make a donation or to purchase a Carey's Hope decal, t-shirt or an ALS wristband.


Monday, August 23, 2010

Deliscious!

Tuesday, August 17, 2010

A dream

I often chug along the board walk and check out the house boats. I've always had a romantic notion about living in one. The intimate village, my sailboat docked at my doorstep--barbecues and fine wine on my deck at sunset. The brown one is my favorite.

On the way home, after shaking every bone in my body on the wooden walks, I stopped to see the geese and ducks keeping cool on the shaded grass. Geese poop is not something you want on your power chair wheels! Been there, done that. Yuk! I need a poop detector on the front wheels.

This girl is the smartest of all--stays in the water and hides behind the reeds. Her babies are independent now. I might of had children if I knew they would move out after one year. Ha!

It's hot and I head for home with sweet red cherries and fresh plump raspberries. I feel weak but happy.


Monday, August 16, 2010

On the positive side

My neck muscles are getting weaker. However,
the world looks better from this angle

Sunday, August 8, 2010

A great loss

"Tony Judt, the author of “Postwar,” a monumental history of Europe after World War II, and a public intellectual known for his sharply polemical essays on American foreign policy, the state of Israel and the future of Europe, died on Friday at his home in Manhattan. He was 62.

The death was announced in a statement from New York University, where he had taught for many years. The cause was complications of amyotrophic lateral sclerosis, known as Lou Gehrig’s disease, which he learned he had in September 2008. In a matter of months the disease left him paralyzed and able to breathe only with mechanical assistance, but he continued to lecture and write."


Tuesday, August 3, 2010

Off to the market jiggety-jig







To market, to market, to buy a fat pig,
Home again, home again, jiggety-jig.

To market, to market, to buy a fat hog,
Home again, home again, jiggety-jog.

To market, to market, to buy a plum bun,
Home again, home again, market is done.

Sunday, August 1, 2010

I'm managing the warm days just fine.
My brother installed an AC and on hot days it cools the living area making it easier to breathe.
The weather makes going out a real pleasure. We often get an iced coffee and sit outside people watching( a favorite pass time).
As my voice weakens, I realize this may be the last summer that I'll be able to speak so I plan on talking and laughing whenever I can.