ALS patient skydives for a cure

Almost completely disabled ALS patient Derek Walton will skydive for a cure this August, continuing the fight against the disease that he says ultimately "buries you alive."

"Your brain stays alert to the very end," Derek explains. "The difference between ALS and other neurological disorders is that people actually die of ALS - with the other disorders, patients die of their complications."

Through the Jump for PALS 2 (People with ALS) event, Derek will raise funds toward research at Sunnybrook's ALS/Neuromuscular Clinic by jumping out of a plane at 15,000 feet - 2,500 feet more than his jump last year.

"In order to have a life of purpose, you need to have a purpose in life," he says. "I am living with ALS. I am not dying of ALS. I want to leave a legacy behind with Jump for PALS, and would like this event to continue every year after I am gone. The Jump for PALS is unique - you have to be a little crazy to jump out of a plane!"

He adds, "We don't have a Michael J. Fox for this disease because we don't live long enough to have one."

Derek's condition began with a slight numbness and cramping in his right hand, which then spread to both his arms and into his legs. It took several years and many incorrect diagnoses by Toronto's top neurologists before Sunnybrook staff discovered that Derek had amyotrophic lateral sclerosis (ALS), also called Lou Gehrig's disease. Sunnybrook is home to the largest ALS clinic in North America.

ALS is a rapid and progressive neurological disease that attacks nerve cells and pathways in the brain and around the spinal cord. Total paralysis eventually takes over. Many ALS patients are often initially misdiagnosed and undergo unnecessary surgeries, which hasten the progression of ALS.

Derek's case is rare. The majority of ALS patients have an average lifespan of less than five years - Derek has now been living with ALS for eight years.

He suspects this year might be his last jump, as he is now completely dependent on his walker. He also uses a motorized scooter and needs help for simple tasks like dressing and meal preparation. His handwriting has become difficult to decipher and he requires home care.

"As my arms and legs weaken, so too does my energy level, but not my heart," says Derek. "I feel that because ALS affects around 3,000 Canadians annually, compared to some other conditions which affect hundreds of thousands of Canadians, there isn't enough awareness or funding for this disease."