Heroes in Our Midst-Week 1
James in his early 60’s was diagnosed with ALS (Lou Gehrig’s disease). He was a competitive athlete and held some world records for his age group. He also had a very successful business, a loving wife and wonderful family and a great life prior to his diagnosis.
His deterioration from his disease was extremely rapid. While working with him on the handicap bathrooms design and the other areas of necessary accessibility I noticed how rapidly his mobility changed from week to week while meeting with him during the handicapped design process.
James lived in a two story condo on the water’s edge which was not the right space for someone with a debilitating neuromuscular disease with no treatment and no cure. Despite my recommendations to look elsewhere he informed me that he loved his home and could afford to do what was necessary and wanted to stay there for the time he had left.
I proceeded to design a handicap bathroom with one of best bath showers (wheelchair showers-handicapped showers), an accessible sink and fold down support arms from Pressalicare to allow him to transfer safely while still able. We did not include one of best bath tubs (walkin bathtub or handicapped tubs) as the nature of his disease would quickly preclude him from completing a transfer safely. In addition to an elevator (Minivator type unit) we also installed a ramp from his garage into the kitchen with an automatic door opener. The unit we selected was an automatic interior door opener used for residential applications.
Within a short while James was unable to get out of his chair without assistance. Being a former athlete it deeply saddened me to see him this way but I never heard even one complaint from him or his family.
He was financially able to try alternate forms of treatment and even traveled on several occasions to Argentina for stem cell transfers but did not see enough progress to warrant continued treatment.
His athletic club put on an event to raise funds for ALS in his honor and this seemed to motivate James to keep going in order to be there for the event albeit in his wheelchair and by this time totally immobile on his own. Very soon after the event James passed on leaving a large group of people deeply impacted by his passing and exemplary attitude.
As a result of this a strong awareness resulted for the urgent need for funding and research to find viable treatments and ultimately a cure for ALS. It was an honor for all of us to see a man and his family deal with his passing in less than two years in the manner they did and we all feel blessed to have known him. The awareness for ALS has grown in a circle that might otherwise never have known or been impacted by this disease and in the long run many others will benefit from this result.