C2: From: David Ponsonby
Parkinson's case offers glimmer of hope for future research JEFFREY WEISS
DallasNews - Matthew Greenstein is living a story about illness, failure and a chance at redemption. He’s also an example of how, in an era when medical research is mostly about crowds of scientists and millions of dollars, a little luck might still make a difference.
Some of the details of his life are like an anti-lottery ticket: Matt has Parkinson’s disease at an age — 32 —when almost nobody has it. He has psychological issues that require medication — but most of the medicines are either bad for people with Parkinson’s or not strong enough to treat Matt’s problem.
But here’s the kicker: A couple of months ago, right after his Dallas psychiatrist prescribed his one remaining choice of medication, Matt’s Parkinson’s got a lot better.
And while nobody knows if one is related to the other, a top Parkinson’s researcher is interested and wants to find out if there’s a connection.
“I’ve been given a gift that few people have ever been given, a second chance,” Matt said.
When Matt was growing up on Long Island, he was athletic enough to play competitive golf and football.
While at law school at Tulane, he met Rachel, now his wife. It’s also where he noticed a mild tremor in his right hand, a slight limp in his right leg.
Matt hoped they would go away.
“I’ve never worked hard at something and not achieved my goals,” he said.
But not this time. A doctor’s tests came in with a stunning diagnosis: Parkinson’s. The classic symptoms include shaking, balance issues, rigid muscles, some speech difficulties -- pretty much what Matt was starting to experience. Only 1 percent of people with Parkinson’s are diagnosed as young as he was. “Young onset” PD, as it’s called, does have one famous face: Actor Michael J. Fox.
Mr. Fox was 29 when he was diagnosed. When Matt got the news, he was 28.
Parkinson’s is a degenerative disease that seems to be related to the unexplained death of brain cells and the loss of an important chemical called dopamine. Doctors don’t know the cause, but genetics, prior infections and other environmental factors may all play some role.
And while there are medications that help relieve symptoms in many people, there is no cure.
Matt and Rachel got married in March of 2004. But the illness started to crowd out bits of what had been Matt’s normal life. The stress of a Type A legal career made the symptoms worse — stress does that to a lot of people with PD — so he shifted jobs.
But the symptoms continued to get worse.
Then he had a bit of good luck. His father, an internal medicine physician in Long Island, has a friend wit h a distant connection to Michael Fox. The friend pulled some strings and Mr. Fox himself called Matt’s dad and offered some support. And the name of his own neurologist: Dr. Susan Bressman, who chairs the neurology department at Beth Israel Medical Center in New York City and is a medical advisor for the Michael J. Fox Foundation for Parkinson’s Research.
As with many PD patients, the drugs she gave to Matt offered only a window of relief. Rachel had to button his shirt before work. When their daughter, Lea, was born in August of 2006, Matt couldn’t lift her from her crib in the morning. If they went out to dinner at night, Matt had to think about the degree of difficulty of menu items.
“It’s so dehumanizing that a 30-year-old man can’t cut his own food,” Matt said. “It just grinds you.”
Neither his friends nor family knew how much that grinding was getting to him. Matt had been hitting the New Jersey casinos since he was 21. What had been a gambler’s itch became a serious psychological addiction — and a way to escape his PD.
“Chips make you equal,” he said.
It was also a side of his life that he kept hidden. These days, Matt uses words like “betrayal” to describe how he treated his friends and family.
In February 2007, a new job opportunity moved the family to Dallas.
Last year, Rachel found out about the gambling and=2 0Matt stopped for a while. Nine months later, he fell off the wagon and had what he calls “a 10-day manic episode.” His family convinced him to see a Dallas psychiatrist, Dr. Robert Schwartz.
Dr. Schwartz quickly diagnosed him with moderate to severe manic symptoms, which seemed at the time like another piece of particularly bad luck:
Some newer medications used to treat manic symptoms can make PD symptoms worse, others aren’t strong enough to help Matt. That left one older drug, lithium, that also has some potentially severe side effects — including Parkinson’s-like symptoms in some people who don’t have PD.
Psychological relief from the drug started after a day or two. But the medical mystery began after a week: Matt’s PD symptoms suddenly got better.
“I got out of bed in the morning and started to walk, normally, to the bathroom,” Matt said.
Mornings, before his PD pills kicked in, had been very bad. And yet, that morning, he was more fluid, more normal. Ditto for that night, long after the day’s PD pills should have worn off. And so on. For the past two months.
Someone who meets Matt in the morning these days sees a soft-spoken man who walks with only the slightest hint of a limp and who lifts his daughter over his head with only a slight tremor.
Could it have been the standard cocktail of medications suddenly working better? Could it have been a spontaneous remission – doctorspeak for “We don’t know why you got better”? Or maybe, just maybe, the lithium had something to do with it?
“It isn’t crazy,” Dr. Bressman said. “We don’t know everything about Parkinson’s disease, and we don’t know everything about how lithium works.”
And Matt’s particular run of medical bad luck — PD plus severe manic symptoms requiring lithium — is very unusual, she said. Unusual enough that a beneficial effect on Parkinson’s from lithium may have been missed until now.
But there may not be anything useful to others in Matt’s case, she warned.
There are at least two tantalizing hints about lithium and PD in the medical literature:
Dr. De-Maw Chuang is a researcher with the National Institutes of Health who has published reports that lithium protects and even contributes to regeneration of mouse brain cells afflicted with conditions that look something like Parkinson’s.
And earlier this year, Italian researchers reported remarkable results in a small study of lithium of patients with ALS, better known as Lou Gehrig’s disease. The researchers said they’d like to try the drug on PD, if they could get the money.
Dr. Bressman is in the middle of a research study about PD and mood disorders – such as Matt’s manic symptoms. His case is prompting her to go back into the data looking for any cases similar to Matt’s. And to informally ask her colleagues if they’ve heard of similar cases. But whether Matt’s case turns out to be a trigger for productive treatment or just another blind alley will take years to answer.
What’s next? Neither Matt nor his doctors know. Matt and Rachel have both seen the movie Awakenings. It’s based on the real story of people left in a near coma for decades who were helped dramatically by a new drug — but only for a short time.
“I’m not ready to have a big parade,” Rachel said. “Who knows how long this will last?”
She figures Matt has lost any excuse for not picking up his towels or loading the dishwasher. And then there are the serious moments.
“The pleasure I have is to see him hold his daughter in a normal way,” she said.
But Matt’s grip on normalcy is still fragile. His PD is not cured, by any means. He still sometimes talks a bit too quickly and fidgets, a sign that the manic problems are only held at bay, not erased. And the temptation to gamble is as close as a computer screen.
Last week, Matt went to Atlanta for a national conference about Young Onset PD organized by the National Parkinson’s Foundation. Weeks earlier, he had contacted one of the keynote speakers, Tom Curran, a TV anchorman from Tampa who was diagnosed in his early 50s. He and Matt got together the day he got t o Atlanta. And the next day Mr. Curran called Matt to the stage at the conclusion of his speech about “Hope for Tomorrow.”
Matt talked about four years of deepening depression — and about his new attitude. He and Mr. Curran had agreed beforehand not to mention the lithium. Even so, Matt said, he had no trouble talking about hope to a roomful of people with PD.
“It’s about not looking at Parkinson’s as a ball and chain, but as a motivator,” Matt said.