Former Osoyoos resident Les Hart, left, races around a patio with his young friend Mitchell Martin in May, 2009. In 2000, Hart was diagnosed with Amyotrophic Lateral Sclerosis. His friends and family are raising funds to help pay for Hart’s two full-time caregivers. Photo submitted - Click on picture for larger image
OSOYOOS TIMES-May 6, 2010
By Laurena Weninger – Osoyoos Times
“The nature of this disease is such that it completely robs you of your independence but leaves the mind sharp. There is no pain or loss of feeling,” said former Osoyoos resident Les Hart. “I am a prisoner in my own body.”
Les, who was born in Oliver in 1965, grew up in Osoyoos.
Until recent years, his mother and father, Richard and Sheila Hart, lived here too.
But the parents moved to be closer to their son who, 10 years ago, was diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease.
ALS is a fatal motor neuron disease that slowly consumes the body.
Most people who are diagnosed, Les said, have a short life expectancy.
“He can no longer speak, swallow, breathe on his own or move any part of his body below his neck,” said Richard, about his son. “When he was diagnosed, they told him that he had three to five years to live. He was (34) years old at that time and his daughter was 11 years old. Kirsten is 21 now.”
Les grew up in Osoyoos and worked at Osoyoos Lumber and Hardware Ltd.
After graduation he moved away, but continued to work in the lumber industry until 2006, when the disease progressed to the point that affected his breathing.
His breathing got worse, and in May, 2007, he was put on a ventilator.
“I could still walk and use my arms and there’s nothing wrong with my brain,” he said. “So I got vented, that’s when my caregivers became an integral part of my life.”
Less was no longer able to be alone, so his caregivers became his companions, his care aides and his link to the world.
“Sherri and Caprice enable me to live life… they gave me my confidence back and I realized I wasn’t going to die anytime soon,” he said. “Sherri pushed me to get involved with the ALS society and two years ago I was asked to sit on the board of directors.
“(Sherri and Caprice) know me so well, they know every gesture, every expression. We even have our own sign language so I can communicate with them without having to use a computer. We go shopping, movies, walks…..well, we used to.”
In January, Les was admitted to Surrey Memorial Hospital and it looks like it will be a long-term move.
But his two private caregivers aren’t funded by the B.C. medical system and the family is running out of the money needed to continue with the care-giving service that does not seem to be optional.
“This is a scary place to be when you can’t talk or move, and I’m not sick,” Les said. “Because I am vented I have to be in the acute care ward.”
He said the nurses don’t have time to provide anything more than the basics, yet government policy says he can’t get funding for his caregivers while in the hospital.
“I’m writing letters to everyone who might be in a position to change the policies,” he said. “It’s about quality of life.”
Meanwhile, his friends and family are rallying to raise more money to pay for the care aides.
A niece started a Facebook group called Keep the Hope Alive for the cause and it explains how people can make donations.
The Hart family lived in Osoyoos for 39 years, having moved to town in 1970.
Richard worked for the National Research Council as site supervisor at the Mount Kobau Observatory until it closed in 1980, then worked at the Dominion Radio Astrophysical Observatory until 1995.
Sheila worked at the Monashee Co -op packinghouse from 1978 to 1988.
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