Published Tuesday, June 20, 2006
Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig’s disease, is a rapidly progressing neuromuscular disease that attacks the nerve cells in the central nervous system. The nerve cells control voluntary muscle movements, such as speaking, breathing, swallowing, and moving around. Without cells to transmit messages to the brain and to activate the muscles, the muscles lose strength, atrophy, and die.
Fifty percent of those with ALS die within three years, and less than ten percent live more than ten years.
Connie Hilliard is among the less than ten percent of patients with a slow progressing form.
Connie first began experiencing symptoms in 1988. She experienced a weakness in her right ankle and hand. Connie knew something was wrong but often found her experience minimised by specialists, some telling her she “just had to learn to relax”. Connie was fortunate to have a GP who believed in her. “I was so glad that my family doctor was good about that, he said ‘I know you’ve got something wrong, we just have to find out what it is’.” After three years Connie found a specialist who had experience with her symptoms and she was diagnosed with ALS. “That was the most frustrating part of the process, those three years of not knowing.”
As soon as Connie was diagnosed she was put in touch with the ALS Society of BC, a non-profit organization founded by ALS patients, their families, and health care professionals. The ALS Society provides services to help improve quality of life to those with ALS. They offer support groups, educational materials, and equipment loans.
Those with ALS rely on special equipment. Depending on which muscles are affected patients need machines to assist with breathing and swallowing, and/or mobility devices. Due to the rapid deterioration of many patients’ muscles the loan of equipment is essential as they do not have the luxury of time to go through the process of getting equipment. Connie has known some people who have “used a walker one week and a power chair the next”.
Over the years the muscles in Connie’s legs and wrists have died and she now relies on a wheelchair to get around. She also requires the help of home support and family to help with tasks she is unable to do independently.
Unable to work or drive, Connie’s social life rapidly deteriorated and she felt isolated at home. As a way to fight the isolation Connie began an ALS support group.
In some cases ALS support groups have difficulty meeting consistently as members pass away, but Connie and her group try their best to meet once a month. “It gets very difficult because I’ve lost some really good friends who I had gotten close to, so it is hard, but at the same time I know that people are getting a lot out of it, and they need that support and social time, and so do I”.
Connie is fortunate to have the help, and support, of her husband, children, and in particular her grandchildren who visit regularly. “It makes a big difference in my life having my grandkids around. They really keep me going.”
ALS can be a devastating disease that comes without warning and which rapidly and drastically reduces people’s abilities. Through research, education, and support, the ALS Society hopes to improve the quality of life for patients while searching for a cure. June is ALS Awareness Month.
To learn more about ALS, or to support the ALS Society, visit www.alsbc.ca or call 604.278.2257.
For information about the ALS support group call Connie at 467•2417.