This story was corrected at 11:30 a.m. July 16, 2014. An explanation follows the story.
On the day Marcy Versel’s husband, Mark, was diagnosed with multiple system atrophy, the two drove home through a driving rainstorm in complete silence.
“It was devastation,” Versel said.
Mark, a healthy, active soccer coach, Cub Scout leader and longtime Rockville resident, had been diagnosed in 2008 with Parkinson’s disease, with the diagnosis later adjusted to a “Parkinson’s-like” illness.
He developed symptoms including rigidity, stiffness in his muscles, low blood pressure and slurred speech.
He underwent speech, physical and occupational therapy to try to stem the symptoms, and refused to let the disease make him an invalid, until he finally became bedridden in the last month before his death, she said.
During much of his illness, the couple still went out with friends and tried to keep some semblance of their life in the shadow of the disease.
“I just insisted that we go on living, knowing that he had something terrible,” Marcy said.
But the disease progressed rapidly, and Mark Versel died in May 2012 at age 68.
This month, their son Neil completed a bike ride from Chicago to Rockville to raise money for research into the illness that killed his father.
The bike ride covered nearly 800 miles, leaving Chicago on July 4 and arriving in Rockville on Sunday, Neil Versel said.
For much of the ride, it was just he and his uncle, although they did have some other riders on the first and last day and met up in various towns along the way with groups that deal with multiple system atrophy and related conditions.
Versel said he came up with the idea for a ride a few weeks after his father died.
One day, cycling around Chicago, where he lives, soon after his father’s death, he realized it was the first time he’d truly felt good in months, he said.
“It was the saddest thing I’ve ever seen in my life,” he said of watching his father deteriorate.
The ride has raised about $6,000 so far, with more expected, he said.
He also hopes to raise awareness about multiple system atrophy.
Versel said the disease is rare, but not so rare that it should be so obscure.
“Nobody even knows the cause of this disease,” Versel said.
No cure or treatment can be found until doctors know what they’re treating, he said.
According to the National Institutes of Health, multiple system atrophy, sometimes known as Shy-Drager Syndrome, is a neurological disorder that attacks the central and autonomic nervous systems.
Its symptoms are similar to those of Parkinson’s disease, plus problems with coordination and speech, and difficulty breathing, swallowing and sleeping.
There is no cure, although symptoms can be treated to some extent.
Most patients die within seven to 10 years from the onset of symptoms, with respiratory problems the most common cause of death.
According to the Multiple System Atrophy Coalition, an advocacy nonprofit, the prevalence rate of the disease is unknown.
Multiple system atrophy is one of those diseases that people never hear about until they know someone who has it, Marcy Versel said.
She and her husband had never heard of the disease until he was diagnosed, she said.
While it helped them know what they were facing, it also made the diagnosis that much more imposing.
“That was a horrible thing, because it’s a death sentence, basically,” she said.
Explanation: The original version incorrectly reported that Marcy Versel participated in the bike ride.