James considers himself a Professional Hobbyist. He is not sure that is a legitimate title but it is the best way to describe his lifetime of learning. James has gained some proficiency in Martial Arts, mountain biking, and paintball while dabbling in 3D design & printing, screen-printing, line skating, bicycle polo, Radio Controlled car racing, and a couple of other hobbies he has forgotten. Fueled by a seemingly unlimited supply of duct tape and cardboard as a child, James has always been a maker.
In the spring of 2016, James noticed weakness and a lack of dexterity in his left hand. After a summer of Physical Therapy and Occupational Therapy, there was no improvement. Following a nerve conduction test and an MRI, the MRI revealed a small tumor within the spinal cord one vertebrae below the base of the skull. The location of the tumor seemed to match the symptoms of weakness on the left side of the body. So in November of 2016, James had surgery on his spinal cord to remove the tumor.
Following his surgery, James had trouble walking and using his left arm. After a couple of weeks working with Physical and Occupational Therapists in a rehab facility, James could walk safely with a simple cane. By January of 2017, he was back at work, able to drive and walk pretty well. However, through the next several months, his progress was not all smooth sailing. By the summer it was clear that his gross motor function was declining and he reached out to Craig Hospital to help him figure out what was going on. Almost a year after his surgery, James had no idea what was going on. Fast forward a couple of months, the doctors and therapists at Craig connected James with a neuromuscular specialist, and he diagnosed James with ALS two days before Christmas.
James and his wife, Johanna visited Mayo Clinic in Rochester Minnesota for a second opinion. By the time they got the confirmation, they had already come to terms with the diagnosis. At this point, James couldn’t walk safely and needed help getting dressed. With two young children in the house and almost two years of progressing symptoms, James and Johanna were getting desperate. They had already been in touch with the ALS Association and they helped James and Johanna catch up. The association connected James with various doctors and therapists and set him up for a power chair fitting with Brendan Warner from Numotion. James was in his new chair by April 2018, after being in an ALS Association loaner chair for a couple of months.
James has been able to pay forward some of the generosity that he has benefited from. James and Johanna had the opportunity to visit the Denver Numotion office to help kick off the Denver ALS walk season. They enjoyed meeting the people behind the scenes and taking a tour of the inner workings of the office. James even dropped off some 3D printed cup holders and mounts he designed and printed for his chair.
As his hand function decreases, James needs an alternative drive mechanism to maintain his independence. James is using the Gyroset Vigo, a new head drive designed by Now Technologies. He is the first user in Colorado and it has allowed him to continue roaming the neighborhood and beyond. It has taken a couple of visits with Numotion Director of Business Development, Michele Longo, and even a couple of phone calls to Now Technologies in Hungary. The Vigo has opened up a considerable amount of freedom for James to get around town.
ALS did not slow down James’ maker tendencies. Fueled by a desire to have his glasses, sunglasses, first aid kit, earbuds, and flashlight on hand, he designed several attachments for his chair.