Once a vigorous hockey player and builder of timber-frame houses, Colton Allen, 32, of Talent, is now confined to a wheelchair, fighting ALS for the past four years.
Colton and his wife, Tiffany, a nursing student and research assistant in Oregon Health & Science University's program at Southern Oregon University, used to enjoy long trips and hikes in the mountains — but no more. Now they trek around the block, "Tiff" on her bike, 3-year-old Etta on her trike and Colton in his bulky, $28,000 wheelchair, which has all the powered features that will see him through the end of his life, expected three to five years after diagnosis.
ALS, or amyotrophic lateral sclerosis, is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. ALS also is known as Lou Gehrig's disease.
The impact of ALS on the Allens' lives has been horrendous, but what the couple now hopes for is a wheelchair van so that Colton can be lifted on board in his power chair and they can get to restaurants, shopping and their beloved Crater Lake.
They made the final cut to win a van in the annual competition of the National Mobility Equipment Dealers Association, with winners to be announced in June. More than a million people voted on a field of 19,000 nominees, with the top 10 percent, or 1,900, now being screened. The association will award three vans, says Tiffany, based on the work and imagination of caretakers to keep the family active in the spirit of life before ALS.
A multitasking powerhouse, Tiffany, 30, got her bachelor's degree in psychology at SOU, is working her lab job nearly full-time and has started on her bachelor's in nursing, with a Ph.D. in public health on her radar after that. In between her caretaking tasks with Colton and their toddler, she was a team captain for the Medford Walk to Defeat ALS last year, raising $11,000 for research.
In writing her essay nominating Tiffany, Colton's mother, Shona Allen of Talent, said, "Between studying, working, raising a toddler, being a devoted homemaker, wonderful cook, caring wife and caregiver to her disabled husband, Tiffany is still able to make a significant contribution to our community."
Tiffany, she adds, volunteers for the Talent & Phoenix Food Project delivering food to the local food bank, volunteers at the Britt Music Festivals every summer, is president of her neighborhood housing association and, at school, serves as the sophomore class liaison for the Student Nurses Association and volunteers for health clinics and educational outreach projects.
"Tiffany is full of energy and always finds time to help a neighbor, bake cookies for work, organize a party for a friend, or brighten your day with a smile," notes Shona.
With his mother and father, Tim Allen, Colton started Swiftsure Timber Works, framing houses with traditional and contemporary designs — an endeavor he had to quit in 2008. Still able to briefly stand and walk around the house, Colton reads to his daughter (she turns the pages) and is writing a book on compound roof geometry and joinery of timber framing.
"Timber framing was my life," says Colton, noting that it's getting too risky to walk because of falls. "Having this disease is definitely not easy, but in some ways it's been enlightening."
Tiffany says her husband "was the strongest person I knew," and she's thankful the disease has not affected his speech. Inevitably, she adds, it will claim his ability to feed himself and breathe — then he will need a respirator.
The ALS Association has been helpful in educating the couple about what to expect — and about their choices at each stage, says Tiffany. They provide a social worker, physical therapist and palliative care nurse and have installed handicapped ramps. Colton also receives Social Security disability.
"I started noticing twitches in my arms in 2007," says Colton. "I ignored it. I was strong and healthy. Over the years it got worse. ... I started having trouble skating and would fall on the ice, and I realized it was something serious. We went to neurologists at OHSU, and on June 26, 2008, they gave me the diagnosis."
As a senior researcher at OHSU/SOU, Tiffany can describe the disease in detail, noting current theories and research toward a possible cure. She wants her Ph.D. in nursing education so she can train nurses and do research in public-health issues affecting seniors.
"ALS is a progressive neurological disorder that ends in death," she says. "There is no cure."
"Very little is known about it," adds Colton.
In addition to her job and school, Tiffany will be organizing her OHSU colleagues for the Walk to Defeat ALS on Sept. 9.
John Darling is a freelance writer living in Ashland. Email him at email@example.com.