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, March 31, 2011

Wednesday, March 30, 2011

UBC Engineering students design an eReader



I'm taking part in a project with UBC Engineering students. They have designed a moveable mount for an eReader and have adapted it for ALS.
It can be operated by a mouse, switch, or button. I'm using the mouse. I can scroll, turn pages, and choose to read the newspaper or a book all by tapping the mouse. Presently, I cannot hold a book and turn pages without struggling and feeling VERY frustrated. Also, I can no longer use a touch screen as my fingers are shaky and I do not have reliable dexterity.
This design allows me to relax in my power chair and read.
I love it!
I am hoping to get permission to continue using it.
Thank you ALS Society, ALS Centre, and UBC for making this happen.

Saturday, March 26, 2011

Charlene- I've never been to me (with lyrics)

http://www.youtube.com/watch?v=QhQWND9jKDA&feature=related

Friday, March 25, 2011

A reminder

"Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma--which is living with the results of other people's thinking. Don't let the noise of others' opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. "
Steve Jobs

Monday, March 21, 2011

Friday, March 18, 2011

March 21st I'll celebrate 65



On Monday I'll reach a milestone that I never expected to reach. Many people get depressed about becoming a senior and receiving their gold card. I welcome it as a bonus.
In 2004 I had my first symptom of ALS when I jumped from a raised garden bed and my legs collapsed. For 3 years my symptoms increased--weak legs, out of breath, staggering at night(and no I wasn't drinking), terrible balance, falling, drop foot, cramping, pain after walking, etc.. Doctors had no idea what was wrong. I was incorrectly diagnosed with peripheral neuropathy in 2006. Finally in 2007 I insisted on seeing a new neurologist. The news followed after testing--I had ALS.
Now in 2011 I'm at the average for length of time for survival. However, I know others who died after 1 year and some 10 yrs.
I'll aim for my 70th birthday and see how I do.

"No matter what age you are, or what your circumstances might be, you are special, and you still have something unique to offer. Your life, because of who you are, has meaning."

- Barbara de Angelis

Thursday, March 17, 2011

Bravery

Thursday, March 10, 2011

Silence Is Golden? I ponder the proverb.




As with many proverbs, the origin of this phrase is obscured by the mists of time. However, the meaning is simple: "Some times not saying anything is preferable to speaking." I ask myself, if silence forever has richness that I'm yet to experience.
As many of you know, I'm losing my voice. It is slurred and slow but still clear enough for most.
Eventually it will disappear and I will only make sounds with no meaning. Speaking will be from a machine and other communication will vary from a letter board to finger signals to a buzzer. Will I find this silence golden? Will you? I expect I'll experience frustration but overall will fare well. Why?
Simply because I've always enjoyed being alone. In solitude I have learned most of what I know.
I want to define solitude as a positive state--not loneliness. As May Sarton said,"Loneliness is the poverty of self; solitude is richness of self."
Never stop talking because I am silent, talk more and let me learn.

The song: Silence Is Golden
You can listen to it here for old time's sake.

Pre-spring sunset

Wednesday, March 9, 2011

Wednesday, March 2, 2011

Bagpipe school--when I was young

I'm second row from the front, first one sitting down on the left(dark dress, white collar). My sister Cheryle is sitting next to me.