May 15, 2014
September 10, 1968 – October 4, 2007
It's been 6 years now since we lost Bruce to Amyotrophic Lateral Sclerosis (ALS), more commonly known as Lou Gehrig's Disease. ALS is a progressive and fatal neurodegenerative illness that attacks motor neurons. When motor neurons die, the ability of the brain to control muscle movement is lost leading to atrophy and paralysis. Fortunately for us, Bruce had some mobility left and could still speak when he was off the ventilator. But needless to say, he could not exercise, run, walk, eat or do anything on his own.
For the last 6 years our family and friends have participated in the Harpoon Run to raise funds to support research at UMass Medical Center under the direction of Dr. Robert Brown, where he and his colleagues are doing groundbreaking research toward a cure for this devastating disease. Dr. Brown was Bruce’s neurologist but also his friend as they knew each other for 12 years, much longer than many Doctor’s know their ALS patients.
Bruce was 28 when he was diagnosed with ALS. It was devastating to know that I would not be able to live the rest of my life with him as we were just married the year before he was diagnosed. We decided to have children despite the diagnosis knowing he was not a carrier of the gene found to cause familial ALS (he was diagnosed with sporadic ALS of which the cause is still a mystery.) We had 2 children, Annie and Tommy, a huge support network of family and friends, two very supportive jobs and Bruce lived for 12 years with ALS, defying the odds of a typical 2-5 year life span once diagnosed. A complication with his trach is what eventually took his life at the young age of 39.
Bruce’s memory lives on in our children and I love seeing his expressions shine in their faces day in and day out. His messages to me are usually a heart shape message like the one attached that was on my neighbor’s roof the night before Valentine’s Day. It fills my own heart with joy.
ALS is a tough one. Keep running to help us find a cure.