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L.A. Beat

Betty’s Run For ALS is a chance to remember an inspiration

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I don’t write a lot of editorials for L.A.  Beat. I am lucky to have columnists who do a much better job of it than I do. I am lucky in many ways. But I have to write about an issue close to my heart — ALS, more commonly known as Lou Gehrig’s disease.
 In addition to hitting 3,000 Canadians per year, killing an average of 2-3 per day, it has affected a number of very significant people. Bluesman Leadbelly died of ALS in 1949, as did baseball player (and the disease’s namesake) Lou Gehrig and more importantly, my mom, who died from it in 2004.
So in honour of her memory my sister, myself and my dad are participating in Betty’s Run For ALS in Calgary tomorrow morning (June 12, 2011).

The scientific definition of ALS (Amyotrophic Lateral Sclerosis (ALS)) is “a rapidly degenerative, always fatal neuromuscular disease. It attacks the nerves that the body would normally use to send messages from the brain to the muscle, resulting in weakness and wasting. Eventually, the individual with ALS is left completely immobilized, with loss of speech and eventually an inability to swallow and breathe.”
The short definition of it is, ALS is a death sentence. There is no cure and no real treatment. Scientists don’t even know what causes it.

All you can do is try to make the person with it as comfortable as possible as their bodies slowly waste away while their mind remains aware of what is going on as they slowly become a prisoner inside their own bodies, unable to do even the simplest things like feed themselves, go to the washroom or even scratch their nose.
’80s guitar shredder Jason Becker has been living with it for the past 20 years which is unusual as most people die within five years of being diagnosed with it.

The average life expectancy of people with ALS in 2-5 years. My mom lasted a year an a half.
 I don’t want to think of mom in her last days or about helping to drive her down to the Mayo Clinic for the final diagnoses and convincing her she had no choice but to accept this death sentence and that she had to make the most of the next year of her life.

I smile, sadly, when I think about her in her hospital bed painstakingly spelling out on a letter board (which was her only method of communication,) about how she wanted to hear the new Govt. Mule CD I just bought with Christmas money she gave me, watching her last about a bar into ‘Bad Little Doggie,’ before she labourously spelled  ‘turn it off,’ on the board.
 I don’t want to think about the tube feedings the wheelchair or the specialized van we had to use to transport her back and forth to appointments. I think fondly of her caregivers and my dad and sister who were there non stop and how she told me not to quit my job and come home. Always listen to your parents, but a year and a half passes quickly.

And before you know it, she’s gone.

I remember the vibrant woman who believed in trying everything at least once; who took me to piano lessons when I was small,  who nagged me to practice guitar, who basically shoved me onto the ice as soon as I expressed a vague interest in playing hockey, after all  ‘why not?’ She’d take care of the little details like hockey equipment , sticks and the registration fees later. It was more important to get out there and do it.

I remember the woman who had a  zest for life, who loved everything from tennis, squash, pottery, knitting, bridge,  and later on became addicted to golf.

I think of the woman who was in the front row during my country band’s first performance in Kenora watching me trying not to fall off the stage because of stage fright and who came all the way to Kenora to watch me perform in the first dinner dinner theatre I wrote.

I think of helping go through her things after she passed away and discovering passports from when she was a nursing student in the ’50s and finding stamps on them from as far away as Saudia Arabia of all places. She had that type of adventurous spirit.

A whole life before me or my sister were a glimmer in her eye.
We can all learn something from her spirit.

I do what I can to keep her spirit alive. And tomorrow I’ll be  participating, and, as always, remembering.
 If you want to donate, contact  the ALS Society of Alberta at or  my sister’s website at  And I’ll be out and about tonight as well.

All donations over $20 are tax deductible. 60 per cent goes to helping Albertans living with ALS through equipment  and client support.  Every little bit helps. For example, a $20 donation buys large handled utensils making them easier for victims to use, $75 buys a bed wedge making it easier for them to breathe and $500  buys a net book communication device using text to speech software to help enhance communication.
 Find out more about the run

— By Richard Amery, L.A. Beat Editor
A version of this editorial appeared in June 10, 2010, it’s an important issue that is close to my heart, so it bears repeating.
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