Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, has invaded the life of Ponoka resident Douglas Howard. Howard, who had been diagnosed with ALS eight years ago, is an active advocate for the ALS society and is participating in the annual walk for ALS on June 14 to help raise awareness and funds to help people with the disease.
Howard will be heading out to Highway 611 on his scooter to conquer many miles for the walk. Because Howard is unable to turn, the straight highway is an optimum route but it still takes a lot of energy for Howard to maintain steering straight.
Howard is passionate about the cause and is hoping that through this people will gain more knowledge about ALS.
“It is a paramount importance for us afflicted with this deadly disease to do what we can to increase public awareness of it and do what we can to raise funds for research into developing a cure,” said Howard. “This is a rather rare disease that the public needs to be aware of. And because it is not well-known, not like Mulitple Sclerosis or cancer, there is little funding for research. So, we that have the disease need to do everything possible to change that while we still have life.”
Howard is preparing for this journey physically and mentally and integrates that into his everyday life and routine.
“Preparation is a daily event. It takes two hours to get up every morning, because we must go through physiotherapy (stretching) to maintain flexibility in the joints and to help control muscle spasms,” he said. “I also go for a pool therapy three times a week, where I endeavor to maintain the muscle strength that I do have. A positive attitude is vital. I have to believe that I can do the things in the pool. Any negative thought and I won’t be able to move my leg or move my arm when I want to. The same will hold true when I’m on my trek.”
Last year the walk for ALS raised approximately $90,000 and this year it is hoped to raise over $100,000.
“About half of the funds that we raise is used to provide the equipment that we will need as we live with this disease,” said Howard. “As you become more disabled the ALS society provides for the modifications you need to maintain some independence. Soon my scooter will be modified to a sip and puff control system (like Christopher Reeves had), because my right arm is getting so I cannot work the controls anymore. They also will provide a hospital bed when we need it, breathing assistance devices, etc. All this equipment will be used again by someone else after I’m done with, since this is a terminal disease!”
An aspect that Howard enjoys about raising money and awareness for ALS is the encouragement and support that comes with it.
“It is a terrible thing to feel alone in your struggles and it is so uplifting and energizing to know that there are others who are taking interest and concern for our plight,” he said.
With ALS there is no known cause or cure. It causes the nerves that control the muscles to die which in turn causes the muscles to die while senses and mental function remain the same. The disease is fatal and usually results when the muscles of the diaphragm become paralyzed.
Life expectancy for persons with the disease is usually three to five years.
In Canada there are 2,500 people with ALS and two to three people die from ALS everyday.
For more information or to support Howard contact him at hahoward@telus.net.