WOOSTER - For a disease so dramatic, its onset was subtle, said Chad Blooming, who was diagnosed with ALS in July 2004.
The discouraging life expectancy, the lack of a cure and the single-medication treatment haven’t kept the optimistic Blooming from taking a proactive stance against ALS - Amyotrophic Lateral Sclerosis, often known as Lou Gehrig’s Disease - not only for himself, but for others who are afflicted with it.
The initial symptoms, such as twitching and cramping, are easily missed, and could be attributed to getting older or being out of shape. They start in the foot, ankle and hand, he said.
“I noticed I was walking a little differently,” Blooming said, soon observing he “couldn’t raise his toes and front of my foot.”
For Blooming, a Cuyahoga County MRDD case manager, the “clincher” came in the spring of 2004, when he discovered he couldn’t shift gears on his motorcycle.
In order to discover what was wrong, “I did what you’re not supposed to do and jumped on the Internet (to research medical conditions),” Blooming said.
Distilling information gleaned off the Internet and derived from his subsequent medical consultation, Blooming described ALS as a disease of the motor neurons in the spinal column and the base of the head.
“(The neurons) are dying out one by one, as does the ability to control the muscles that go with it,” he said. “It (involves) your ability to speak, swallow and breathe.”
He also learned “gruesome statistics.” Fifty percent of individuals afflicted with ALS die within two years; 90 percent within five years.
“It’s not like MS (multiple sclerosis) where you can manage it and live with it,” he said. A diagnosis of ALS “kind of rocks your world.”
“There is no known cure and only one FDA-approved drug,” a medication even doctors admit is “pretty much of a bust.”
“Traditional medicine offers virtually no treatment - just one drug, which is for symptom relief,” Blooming’s wife, Ellen, said.
“Other than that, it’s ‘Get your affairs in order,’” Blooming said.
It’s a bottom line he is not willing to accept, particularly in the role of victim.
Instead, he has become his own advocate, finding others with the disease and looking for “common denominators,” as yet not identified.
Research is a “daunting task,” said Ellen, who tried to help until she recognized “there is always something new being talked about, some new research to follow.” She couldn’t keep up with her own research and Internet leads.
While recognizing the severity of ALS, Blooming also knows “there are always people outside of the bell curve.”
“I’m in contact with a lot of people on the Internet who have (lived) beyond five years,” he said. “Some have made it their life’s work to find out why they have lived longer.”
Among them is Eric Edney, who has linked the disease with environmental toxins and has proposed detoxifying the body of heavy metals - from a variety of sources, including vaccinations and pollution - promotes survival.
The longer you “hang in the game,” the better the chance of enjoying a cure or at least a slow-down of the disease, said Blooming, who now eats organically grown produce, takes supplements and drinks a “milkshake” made of “crunched-up carrots, vitamins and garlic” three times a day.
Because ALS is “an orphan disease,” afflicting another 5,000 to 6,000 people each year, those who have it don’t comprise a big voting block to trigger research or to serve as subjects for research.
An “Orphan Drug Bill” would give companies compensation for researching drugs needed by small populations, Blooming said.
The ALS-TDF (Therapy Development Foundation) is a “wonderful organization of pure research,” said Blooming, highlighting also ALSA (ALS Association) with chapters in Cleveland, Akron and Canton.
He hopes to initiate a Wooster “Walk to Defeat” ALS, but will “be part of one already going first.”
“It raises research dollars,” he said.
At the end of November, Blooming and his wife, Ellen Pill, attended the 15th annual symposium of the ALS International Alliance, which tries to coordinate and “hook up” advocates for research, and to provide “cohesion and focus” for those personally battling the disease or working to solve its mystery.
Blooming’s motto is, “Do what you can do.”
“I’m going to encourage people to interact and get some dialogue going,” he said.
That philosophy includes “hav(ing) some hope - an extremely powerful, wonderful balm.”
Also powerful are the support and prayers of family, friends, and even strangers who have donated money for research or offered to help raise it.
Ellen, a free-lance writer, is working on a children’s book and script as possible fund-raisers.
She appreciates the inspiration of “Chad’s ready smile, sense of humor and amazing attitude toward life.”
“There are always new things being discovered,” he said.
Reporter Linda Hall can be reached at (330) 264-1125, Ext. 230, or e-mail lhall@the-daily-record.com
