The James R. Booth Memorial Award
Jim's battle with ALS
(as seen through the eyes of a friend from afar)
This section is entitled "Jim's battle with ALS", but of course it was much more than that. It was a team effort that demanded a huge contribution of the entire family, as well as support from dedicated friends. Jim's wife, Sandy, put her career on hold while she took on the role of full-time care giver. Her career choices of nursing and, subsequently, accounting were put to full use as she provided hands-on care, trained other care givers and handled the stringent financial reporting requirements of the BC government.
Jim first learned of the impending battle in late November 1997. He and Sandy were living in Beijing at the time, as Jim had taken on a 5 year assignment as Canadian Trade Commissioner (Agriculture, Food and Fisheries) in China. His symptoms started that fall on return from a holiday in Indonesia. He found that his left foot would not step up at sidewalk edges, etc. while walking to the Embassy. As the symptoms grew more severe, he decided to return to Canada for tests that resulted in the diagnosis of ALS.
From the outset, Jim and Sandy decided that they would meet this frightening foe head on. Jim was determined to outlast the prediction that he would likely have less than 5 years to live. He took considerable comfort in the experience of Stephen Hawking, the world-renowned British physicist, who has defied all of the odds on longevity for an ALS sufferer. He participated in an experimental drug testing, not knowing whether he received the new drugs or the placebo.
But it was much more than longevity that Jim was striving for. It was also quality of life. In the early days, Jim and Sandy took the opportunity to continue their passion for world travel, visiting spots in all corners that they had wanted to see and re-visiting some that they particularly loved.
As the disease became more entrenched and Jim gave up the cane and the walker in favour of the motorized wheelchair, they confined their travels to the vicinity of their home in West Vancouver. They bought a van that would accommodate the large wheelchair so that they could continue to live as normally as possible. They also renovated their home to accommodate new equipment and to add hoists and other equipment as necessary.
Part of Jim's quest for the best quality of life possible, meant remaining in the home that they cherished so much. The home overlooks the Vancouver Harbor, with gorgeous big windows and Jim loved to keep track of the traffic in and out of the harbour. He became something of an expert in knowing where the ships were bound and what they would be carrying.
The inevitable unrelenting course of the disease ultimately took away all of Jim's voluntary muscle movements. In practical terms, this left Jim without the ability to move any parts of his body, other than his eyes. A respirator took on the work of normal breathing and nourishment was through a tube. The disease also robbed him of speech and his most cherished past-time, debate. Nevertheless, Jim would "hold court" in the sunroom, entertaining visitors and enduring the intrusive administrations of care-givers. All communication had to be achieved in binary fashion ~ yes / no, more than / less than and so forth. He communicated with his eyes, either staring at you or blinking depending on whether the answer was yes or no.
Jim never ceased to amaze visitors with his ability to communicate under such trying circumstances. His mind was as sharp as a tack to the end. Although his body had totally failed him, there was no doubt that his mind was as inquisitive and challenging as ever. It left visitors with the clear impression that the real essence to life is contained within the mind and spirit and that the body is just an imperfect container. Visits with Jim were always inspirational.
In the final stage of Jim's life, his eyes lost the ability to respond and communication became minimal. Jim succumbed to complications arising from ALS on Easter Sunday, March 27, 2005 ~ 7 years, 4 months from diagnosis. God's speed old friend!
What is ALS?
ALS, also known as Lou Gehrig's Disease or Amyotrophic Lateral Sclerosis, is a progressive neuromuscular disease in which nerve cells die and leave voluntary muscles paralyzed. The senses are unimpaired and the intellect may remain unaffected. ALS can strike anyone, male or female, of any ethnic origin and of any age. Usual onset is in middle-age, but some have been diagnosed as teens.
Eighty per cent of those diagnosed will die within two to five years. Less than 10 per cent of cases are hereditary and are called familial ALS, 90 per cent of ALS cases have no known cause and are referred to as sporadic ALS. ALS is not contagious.
Approximately 3,000 Canadians live with ALS. Every day two or three Canadians die of the disease. ALS is the most common cause of neurological death in Canada.
Want to know more about ALS?
Jim and Sandy received a great deal of support and information from the ALS Society to help them through their odyssey. If you would like to know more about the Society or about ALS, please click on the following button to visit the excellent ALS Canada Website -->
The ALS website will also explain how to donate to support their cause and how you can get personally involved in the fight against ALS.