Colin Campbell walked out of the support group for Parkinson’s disease in shock: His fellow patients were all 20 or 30 years older, with symptoms very different from his own — leading him to doubt, even disobey, his doctor’s treatment advice.
Parkinson’s isn’t just an old person’s disease: A growing number of Americans are diagnosed before age 50, and their illness seems biologically somewhat different from the version that strikes seniors.
Doctors don’t yet know the best treatments for the young versus the old. But younger patients do seem to respond better to anti-Parkinson’s drugs and surgery — hopeful news, if they can get past the disease’s myths and see a specialist who understands how to mix and match myriad treatments.
“There is no cookbook therapy,” Dr. Fernando Pagan, a neurologist at Georgetown University Hospital, told a meeting of the National Parkinson Foundation last week.
“You have to find the right cocktail.”
That’s an increasingly important message, as doctors learn to care for younger patients and as new treatments hit the market — a pill called rasagiline debuts later this summer, and a once-a-day patch treatment now used in Britain could arrive here by year’s end.
How the disease works
Some 1.5 million Americans are diagnosed with Parkinson’s disease, most in their 60s and 70s. The disease gradually destroys brain cells that produce dopamine, a chemical crucial for the cellular signaling that controls muscle movement. Too little dopamine causes increasingly severe tremors and periodically stiff or frozen limbs.
Up to 225,000 of those patients were diagnosed before age 50, the “young-onset” Parkinson’s that often appears without those classic symptoms. Instead of trembling, younger patients at first may find it hard to stand up straight, or drag a foot while walking.
Nor do younger patients seem to worsen as fast. But young-onset Parkinson’s brings unique hardships, as patients battle the degenerative brain disease during their prime child-rearing and earning years.
“A lot of these cases went undiagnosed” until recently, says Dr. Michael Okun of the University of Florida, the Parkinson foundation’s medical director. “We are beginning to get the word out.”
Treatments for young patients
Now the question is how to treat patients like Campbell, of Mechanicsville, Va., who noticed problems walking at age 44 but wasn’t diagnosed until five years later — and then resisted initial treatment because he so feared the side effects he saw in older patients.
“There are so many myths,” laments Pagan, who took over Campbell’s care and has helped control his symptoms with a careful combination of drugs and surgery.
There is no cure for Parkinson’s. The most effective treatments are the drug levodopa, which replaces some of the brain’s lost dopamine, and a brain implant called deep brain stimulation, or DBS, that helps control tremors.
There are five other types of anti-Parkinson drugs that work by stimulating more dopamine production, helping dopamine stay in the brain longer, or boosting levodopa’s effects.
All come with side effects. The question is which to use when, and how to limit those problems. Confused patients lined up last week to quiz Pagan and Michigan pharmacist Mark Comes, who has young-onset Parkinson’s.
Their top concern: the widespread belief that levodopa should be a last-ditch therapy. Some patients fear it will actually do harm, while others worry that using it too soon will make it lose effectiveness. Not so, both specialists insisted.
“Why wait with something that works?” asked Comes. “You’re young, let’s try it and see.”
In addition to fighting symptoms, there is some evidence that low doses of levodopa just might help preserve patients’ remaining dopamine-producing cells, Pagan added. That’s particularly important for younger patients, who often require lower doses — meaning they’re also less likely to experience troublesome side effects.
“Withholding levodopa may not be good practice,” he said.
Don’t expect one drug to suffice; combination therapy is fast becoming the norm. But mixing medicines can be tricky. Adding a second drug may requiring lowering the dose of a first to avoid toxicity. Bring a relative or friend to doctors’ appointments, Comes advised — they might have noticed symptoms of some common psychiatric side effects, such as depression, that a patient can overlook or not admit.
Also changing is the old advice to avoid DBS surgery until drugs fail, especially for younger patients who typically tolerate the surgery better.
“I’ve got two little kids, and before this surgery I was a stone-faced, very slow-moving, slow-talking guy,” says Campbell, now 54, who underwent DBS last December. Now, “I laugh, I tell jokes, I’m a dad again.”