They tremble. They shake. They have problems walking and sometimes freeze and cannot move at all. These are all signs of someone with Parkinson's, a chronic neurological disease that has no cure and afflicts 6.3 million people worldwide.
Parkinson's is most common among older men, but it also attacks women and young people like Tom Isaacs. He was diagnosed with the disease 10 years ago, when he was only 27. Parkinson's is a progressive disease and over the years Issacs has gotten worse.
When his medication wears off -- or hasn't yet kicked in -- he shakes, which was what he was doing when he began his remarks at the World Parkinson Congress in Washington recently. The meeting brought together 2,300 scientists, caregivers and people living with Parkinson's to discuss the latest advances, current treatments and management of the disease.
Tom Issacs stepped to the podium in a session called "The Hidden Challenges of Living with Parkinson's" "I want you to stare at me because this is what it is like [to have Parkinson's]." Isaacs then sat down and shook, his arms waving in random jerky motions.
Several researchers spoke briefly about the physical and psychological problems of living with Parkinson's before Isaacs -- by then considerably more composed -- stood up. Comparing himself to a washing machine on the spin cycle, he said that those motor symptoms are not nearly as bad as the side effects of his medication, which, he says can send his body into "uncontrollable contortions, a bit like an out of control hose pipe on full bore." And, he adds, "far better the washing machine and the hose than the worst one of all that I get from time to time, the feeling like I am locked in a fridge with a frozen top compartment. I cannot move. I cannot communicate. I am hot on the outside, but cold and dark on the inside."
Tom Issacs says Parkinson's hasn't kidnapped his sense of humor, his spirit or his sense of worth. Four years ago he quit his job in the real estate industry to raise money for "The Cure Parkinson's Trust," a charity he helped create. "We are raising funds and raising awareness about Parkinson's and trying to put funds into research work, which is actually going to have an impact on people's lives," he says.
But while he pushes for a cure, he says he remains stuck in a body he cannot control, not knowing from day-to-day how he is going to feel. However, his wife, Lindsey, says the disease doesn't make much difference at home, although, she says. "You have to be more flexible because things don't often happen on time and you can't always do what you want to do. You have to maintain a good flexible communication in the relationship that is the most important thing, for us anyway." Issacs says he feels that it is worse for her than it is for him.
Isaacs is impatient for a cure, and says greater public awareness will help. "A change in public perception will propel us to the finish line and the word Parkinson's will never be used again, except to say that I used to have it. I used to have Parkinson's."