Ihde finds hope in advocacy
By: TIFFANY WOODALL Review Staff firstname.lastname@example.org, Staff Writer
"First you cry, then you decide to fight or sit around and wait to die," said Dave Ihde of his Nov. 29 diagnosis with Amyotrophic Lateral Sclerosis (ALS). "I’ve decided to fight."
Commonly referred to as Lou Gehrig’s Disease, Ihde’s battle pits his motor neurons against him, interrupting the signals sent from his brain to his voluntary muscles. His first symptom occurred in July 2012 when he noticed he was slurring his speech, he said. A month later, he started dragging his left foot. Now, his speech is labored and his foot is supported by a leg brace, called a Mofo, which serves to protect him from tripping or falling.
A seemingly simple contraption, the Mofo costs $1,500. And Ihde’s medication, Rilutek, which is the only FDA-approved drug prescribed to help slow the decline of symptoms associated with ALS, costs $1,400 per month. Fortunately, Ihde doesn’t pay a dime.
"I’m blessed because I’m with the VA," he said. Last year, the Department of Defense declared ALS a service-related disease as veterans are twice as likely to develop the disease than non-veterans. Being a veteran of the United States Air Force, Ihde receives 100 percent coverage for his ALS-related medical expenses. Just last week he was given an iPad with a type-to-talk application to aid with his communication as his voice weakens.
Although more veterans than civilians have been diagnosed with ALS, researchers have yet to determine the cause of the disease.
"I haven’t been sick a day in my life," said Ihde. Except for having the flu at age 19 and less than 10 colds throughout his life, the 56-year-old has had a clean bill of health.
"And then boom, out of the blue," he said of his diagnosis. "This is one of the worst diseases in the world."
According to the ALS Association, the life expectancy of a patient with ALS after diagnosis is on average two to five years.
"Time is our enemy," said Ihde. "Some people, they’ve just given up. I need hope and possibility."
His hope is apparent in his advocacy efforts: He has raised $1,295 of his $1,500 goal for the Hershey 2013 Walk to Defeat ALS, which will take place June 1 at Hershey Medical Center, and he helped to plan the upcoming Harrisburg Advocacy Day, scheduled for April 22. Ihde and his wife of 29 years, Debbie, will also attend the 2013 National ALS Advocacy Day and Public Policy Conference next month in Washington, D.C. Advocates and supporters will meet with members of Congress on Capitol Hill May 9, calling for a $10 million appropriation to continue the ALS Research Program and action on legislation like the MODDERN Cures Act (Modernizing our Drug and Diagnostics Evaluation and Regulatory Network). Last year, Pennsylvania budgeted $300,000 for ALS patient care services, supporting over 900 people with the disease.
"Nobody knows how much time you have, so every day you have to make it count," said Debbie. "(Dave’s) attitude is so good about it that it helps me."
Locals may know Dave as an avid photographer, capturing memories for high school seniors, athletes, brides and many others throughout his 32-year career. He decided to close his studio as a result of his diagnosis, but that won’t stop him from pursuing his passion.
"I do think I may be able to go back to photo art as I began, and perhaps some more historical Ephrata area post cards or nature," he said. "Of course, though, people have more money than trees." Rest assured, his sense of humor is safe.
And so is his spirit. Although he can no longer sing, he continues to play bass in the praise band at Akron Church of the Brethren Sunday mornings.
"If you have to have ALS, this is probably one of the best places to be," said Ihde. "The people at Hershey Med and the Philadelphia ALS Association are top shelf and on the forefront of the fight."
The Philadelphia Phillies are on board, too, going to bat against the disease May 16 at their annual Phillies Phestival. To date, the team has raised more than $13.5 million for the Greater Philadelphia Chapter of the ALS Association.
"I have a lot of family, friends and strangers praying for me, for a miracle of a cure, a spiritual intervention," said Ihde. "I’m praying for that miracle, too, and then when it occurs that the scientists and doctors dedicating their lives to beating this thing will find something physical in me that they can use to cure all the others."
To support Ihde in his fight, visit his Facebook page at facebook.com/dave.ihde.1 or search "Hershey ALS Walk" online to register or donate. More information about ALS can be found online at alsphiladelphia.org. More IHDE, page A16