I work in medical research and, up until very recently, my long-time gig was Motor Neuron Disease. More specifically, I worked in clinic with people who had been diagnosed with Amyotrophic Lateral Sclerosis (ALS). You may also know it as Lou Gehrig’s disease.
ALS can be hard to diagnose. The early signs of the disease appear to be various other things and it isn’t until all of these other illness are ruled out that doctors begin to think of ALS. I once had a patient who, because swallowing problems were his first symptom, was scared he had throat cancer. By the time the diagnosis of ALS had been made, he and his wife told me they wished it had been cancer.
People who have been diagnosed with ALS don’t know what to expect. Every person’s progression is different and even the experts don’t know what lies ahead for the individual and their family. This uncertainty is one of the hardest things about living with ALS. The general facts we do know are never reassuring.
ALS is a progressive and ultimately fatal neuromuscular disease, which has no known cause, cure or drug therapy of consequence. Individuals who are diagnosed with ALS do not typically survive beyond 3-5 years. This devastating disease slowly robs the individual of the ability to walk, talk, and ultimately, to breathe. – ALS Canada
People sometimes have a hard time understanding this, but I loved my work. I was there for someone if they needed to be angry and I was there if they wanted me by their side in hospital as they died. I was there if they needed me and every day was an honour.
May is ALS awareness month, so now that I’ve made you aware of all the terrible things about ALS, I want to tell you something about ALS that is wonderful.
I would like to take a few moments of your time to tell you about my friends Darrell and Deana. Unfortunately, as I have alluded to above, we met under terrible circumstances.
Darrell’s first symptoms of ALS were speech related and it wasn’t too long before he lost his ability to clearly communicate vocally. This would be tough for anyone, but it was especially hard on Darrell who was in sales and needed his voice to make a living
Darrell has an artist’s eye and had always played with photography as a hobby. When he suddenly found himself without work to fill his days, his amazing wife Deana was quick to push the camera into his hands and encourage him to get serious.
This is the photograph that is on my living room wall – Lunenburg Window
Darrell has an amazing sense of beauty and has focused his lens on the splendour that surrounds us here in Nova Scotia and Atlantic Canada.
This is his website so you can look at more of his work – Eastern Light
Darrell and Deana have been dealt a terrible hand but they are still at the table and in the game. In addition to his art, Darrell focuses a lot of energy on helping people who are living with ALS. He has started a support group that meets once a month and he has become one of the province’s strongest fundraisers in the Walk for ALS. He also donates a portion of all his photography sales to the ALS Society of Nova Scotia.
My world is a much prettier place with Darrell and Deana in it!