Alex is one of the 10 million people worldwide who are living with PD, a progressive degenerative neurological disorder. He also has the dubious distinction of being among the 4 percent of those who are diagnosed with PD under the age of 50 and are therefore classified as Young-Onset patients. Symptoms of Parkinson’s, which are caused by a deficiency of the hormone called dopamine, include impaired motor control, tremors, stiffness, and problems with balance. The cause of the condition is unknown although genetic and environmental factors may play a part.
“They told me there is no cure,” Alex recalls. “I was scared, but I made up my mind to scare myself healthy.” To that end, he improved his already nutritious diet and added regular workouts at a gym to his schedule of ballet classes. Most important, however, he used his lifelong knowledge of ballet technique to create his own form of dance therapy called “Parkinson’s on the Move.” By 2013, he was teaching weekly classes complete with musical accompaniment to PD patients at the Tully Health Center of Stamford Hospital in Connecticut.
Then in April of 2014, he traveled to Wichita, Kansas to lecture and teach his dance-based exercises to the PD patients at the ReLive Rehab Center during the National Parkinson’s Disease Heartland Symposium. Perry Young, Divisional Vice President of the center, said that Alex “brought a tremendous amount of energy and excitement to our people with PD.” Alex credits his program with going a long way toward helping him slow down the progression of his disease. He does take medication, but he maintains that his program is equally if not more important. “I am constantly engaging my brain and strengthening my body,” he says.
Not only that, but he has posted original videos on YouTube that tap into his innate sense of humor and upbeat attitude to get his points across. Referring to Alex’s video entitled “Shaken, Not Stirred”, Young-Onset PD forum participant Donna Lagan wrote on her blog: “I laughed, and laughed some more. What a unique perspective, humbling, but also motivating.”
Taking his creativity to an even higher level, Alex is now choreographing in his new position as Artistic Director of the Cary Conservatory of Ballet in North Carolina. He left New York in August of 2014 and began work on the Cary “Nutcracker” in September. He will collaborate with other Cary choreographers for future productions, including an original re-staging of “Coppelia,” the beloved comedy to the music of Delibes about a toymaker who tries to bring a life-sized doll to life.
“One of the reasons I took this job is that New York is a walking town and here I can drive,” he says. “For a while I got by in NYC with a folding bike that I rode from the subway station to the dance studio because walking was too difficult and painful. I joked that my bike was my wheelchair except that my wheels are inline.”
Alex maintains that being relieved of the necessity to walk as much as he did in NYC has allowed him to conserve energy for teaching dance and choreographing, the creative work that sustains not only his body but also his soul.
As for the future, he is considering a relatively new treatment known as Asleep Deep Brain Stimulation. He traveled to Colorado for a consultation with David VanSickle, MD, PhD, one of a small number of neurosurgeons in the United States who performs Asleep DBS surgery for Parkinson’s patients.
“I asked Dr. VanSickle if there’s a cure on the horizon and he replied ‘Not in our lifetime,’” Alex says. “That was like a punch that took my breath away. But I’m going to keep fighting just the way I have for the past nine years. I’m not going to give up or slow down simply because the prognosis isn’t necessarily positive.”
Making good on his word, Alex continues to lead his exceptionally healthy and creative lifestyle. Beyond that, his dream is to take his dance-based program to a wider audience. “Wherever I show up, people understand the value of what I have to say and what I teach,” he says. “I was actually offered a job in Kansas at the center where I did my presentation. But I would rather be on a lecture circuit and reach more people.”
Given Alex’s talent and determination, plus his ability to invoke both creativity and laughter as medicine, that goal may well be within reach. In the meantime, he’s taking great satisfaction in sharing his knowledge and love of dance with a new generation while also getting his message out to as many PD patients in person and on the Internet as he can. “I want people to know that I have to constantly be creative,” he says. “When I’m doing something creative, I have no symptoms whatsoever. That is my hope for all the people whose lives I manage to touch.”
By Sondra Forsyth
Shaken, Not Stirred
A short film about living with PD