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In the spring, Mark Richardson’s alma mater, Louisa County High School, honored him with a sign along the baseball diamond fence noting the years he played. Photo by Vickie Southall
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The Richardson family: Mark (center), surrounded by (from left) wife Cindy; sons Jon, 18, and Jake, 20; and daughter Maddie, 15. Photo by Vickie Southall
In December 2010, Mark Richardson sang "The Lord's Prayer" in front of his extended family at his uncle's funeral. Less than two years later, the 47-year-old Glen Allen father of three struggles just to string sentences out of guttural groans.
"It's frustrating," Richardson sputters, barely able to pronounce the words' consonants. "You can feel your body changing piece by piece, and you can't do anything about it."
The former chief financial officer for a local electrical distributor was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, in June 2011. The progressive neurodegenerative disease deteriorates the motor neurons that reach from the brain to the spinal cord and muscles throughout the body, eventually leading to the motor neurons' death. The disease attacks the nerves that provide voluntary movement and muscle power, slowly robbing the body of its ability to move, speak, swallow and breathe, but sparing the sense of sight, touch, hearing, taste and smell.
"It's degrading," Richardson says. "Embarrassing."
A recreational hunter who grew up in Louisa County, Richardson noticed something was wrong when he couldn't grip his hand around his wallet to pull it out of his back pocket during a hunting trip in the fall of 2010. That, compounded with the observation that his gold wristwatch was gradually getting looser and that his upper body muscles would occasionally twitch involuntarily, led Richardson to make an appointment with his family physician.
Eight months and a litany of diagnostic tests later, doctors at the Mayo Clinic confirmed the worst. Life expectancy for an ALS patient averages about two to five years from the time of diagnosis.
"It's a challenge every day," Richardson says, adding that he relies on his Christian faith for strength.
There is no single test or procedure to ultimately establish the diagnosis of the disease, for which the causes are unknown. Rather, it is diagnosed through a process of elimination, ruling out diseases that mimic it.
ALS occurs throughout the world, with no racial, ethnic or socioeconomic boundaries. The disease that plagues as many as 30,000 Americans and at least 80 Richmond-area residents is slightly more common in men than in women. Military veterans are at a higher risk of developing ALS than the rest of the population, and those deployed during the Gulf War are approximately twice as likely to be affected by it, according to the ALS Association.
"It's likely we need to better understand the causes of ALS in order to find more rational, targeted treatments," says Dr. Ted M. Burns, a professor of neurology with the University of Virginia Health System who practices at the Richard R. Dart ALS Clinic in Charlottesville, where Richardson is treated.
There is no cure or treatment that halts the disease, but one FDA-approved drug, riluzole, modestly slows symptom progression and delays the need for a breathing tube. Several other drugs are in clinical trials.
"There's been some important advances in the last few years that are getting us closer to better understanding the mechanisms for ALS," Burns says, citing a Northwestern University research study that investigated causes of the disease by studying how cells manage, degrade and recycle proteins. "[But] there need to be more clinical trials. More money needs to be given to research so that we can more quickly understand what underlies ALS, what are the mechanisms that cause ALS and focus on treatment."
It costs an average of $200,000 a year to provide treatment for ALS patients.
Last year, Richardson participated in the Richmond Walk to Defeat ALS. With the help of two teams of friends and family members, he raised more than $15,000 that was used to support patients' families and fund research toward finding a cure. This year's 5K walk around Brown's Island is on Oct. 27.
"Coming out and seeing this huge crowd of people celebrating together means so much to the patients and their families," says Cathy Easter, director of philanthropy with Washington D.C., Maryland and Virginia ALS Association chapter. "It really helps them feel like they matter."
For more information on the Richmond Walk to Defeat ALS, call (301) 978-9855 or visit web.alsa.org/richmondva .
