Every morning, the first thing 60-year-old Mark Sandler thinks when he gets up is “do something.”

“You can’t stay in bed all day,” Sandler tells himself.

Easier said than done. Sandler, a retired mail clerk, has multiple system atrophy, a rare, often misdiagnosed condition that stoops his thin shoulders, slurs his speech, warps his hands and gives him an awkward, shuffling gait.  He lives in Berkeley with his brother, who cooks his meals - his favorite is grilled chicken- and does his laundry.

Sandler’s symptoms have not progressed as much as most with his condition, but he still finds it difficult to walk quickly or make himself understood. Never really loquacious, Sandler has dealt with his disability over the years by speaking less and less. Now, it’s hard to get him to answer a question in more than one or two words because, for longer sentences, he often has to repeat himself.

“It’s frustrating,” he said.

Experts at the Shy-Drager Syndrome/Multiple System Atrophy Support Group’s recent annual meeting in Boston noted that the incidence of the disease is on the rise, from three out of every 100,000 people to four in recent years. Cause and cure for the disease remain elusive.

Don Summers, president of the support group, attributes the rise in cases to doctors’ greater familiarity with the disease, but says more awareness is needed. 

“The doctors just don’t know our illness,” said Summers, whose first wife died of the disease in 1997.

Multiple system atrophy is characterized by the progressive death of cells in the cerebellum and other parts of the brain. Consequently, signals that the brain normally sends to the body’s limbs never arrive.

Men are affected more than women.  Symptoms usually begin at around age 55, though this can vary considerably. Thus far, there seems to be no genetic or viral cause.  Those affected tend to lose their ability to walk, eat, speak – even sweat – in a very short time.

About 80 percent of people with multiple system atrophy are misdiagnosed with Parkinson’s Disease. But the only way to detect the illness for certain is through an autopsy, which shows the telltale cell loss in various parts of the brain and the presence of the protein synuclein in the brain tissue.

Consequently, patients spend their lives never being sure about what is causing their disability, but knowing that they can do nothing to stop its progression.

“A lot of us complain that people come up to us and see us not as people with disabilities, but identify us with our disability,” said Larry Sork, a friend of Sandler’s from a now-defunct local support group.

Although Sandler walks unassisted, his teetering steps sometimes attract stares.  He says he doesn’t like the stares, so he does the only thing he can think of.  

“I stare back,” he said.

Sandler first realized something was wrong 24 years ago when he could no longer lob a ball across a tennis court in Cleveland, where he grew up. Less than two weeks later, he had trouble walking and speaking clearly. Doctors diagnosed him with Parkinson’s. 

He became depressed. He couldn’t get promoted from his position as a mail clerk at the U.S. Department of Defense accounting offices because his speech was too garbled for phone conversations.
Still, he hoped that a medication would be found to help him walk and speak normally again.

In 1978, Sandler moved to Berkeley after being transferred in his job. Five years later, his hopes were dashed.  His medication for Parkinson’s had never worked.  The consequent MRI and CT scans his doctors performed revealed why. Sandler did not have Parkinson’s disease, rather he had the signs of multiple system atrophy.

“I was a little bit angry that they hadn’t figured it out sooner,” he said. “I wanted them to get the right illness. I thought they’d get some medication that would help me.”

After researching treatment for his new diagnosis, Sandler lost hope that he would someday get better. Doctors said there were no medications to mitigate his symptoms and prescribed only physical therapy. 

Once Sandler knew his disability would not disappear, he looked for and joined a support group for people with disabilities at a local church and started going on hiking trips with others like him.

At least twice a month, Sandler takes outings with Bay Area Outreach and Recreation Program, which offers fitness activities for disabled people.  Recently, he went on a trip to Blackie’s Pasture in Tiburon. The program has also taken trips to Sausalito and San Francisco.  Sandler enjoys the exercise and spending time with friends.

“Exploring a new place together, we support each other. And I think Mark, like everyone else, enjoys that aspect of it,” said Lori Gray, a program coordinator and herself disabled.

Sandler is also an avid walker.  He walks daily from his South Berkeley home to downtown, stopping along the way to read the San Francisco Chronicle or the Berkeley Daily Planet.

“Through exercise you’re challenging yourself, pushing yourself beyond what you’d normally do. That’s very beneficial for people with disabilities,” Gray said.

People with multiple system atrophy generally don’t live more than 10 years after symptoms first appear, though life expectancy can vary widely. Sandler did not know this until told recently by a reporter.  He said his doctors never mentioned it.

Nevertheless, he’s gone far beyond that limit by surviving for 24 years with his condition. Against all odds, his symptoms seem to have stabilized.

“I can still walk,” he said optimistically.

The fact that Sandler is both alive and functional mystifies Summers.

“I’d question that diagnosis,” he said. “Ten years functional after diagnosis is unheard of in the whole community.”

Sandler said it no longer bothers him that he doesn’t know exactly what he has.

Besides, he has other things on his mind. Though he retired after he was laid off because of Defense Department cuts four years ago, he has been actively trying to find a job.  Right now he wants to get a part-time job at the Berkeley Public Library.

“It would be something different,” he said. “To have different things to do.”

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