Sparks of Life Providing Crucial Support to Jewish Parkinson’s Patients
By: Sandy Eller
Lakewood resident Rabbi Moshe Gruskin was in Detroit on a 2009 fundraising trip the first time someone suggested he might have Parkinson’s disease.
The concerns were raised by a doctor friend who was worried by the way the then 58 year old Rabbi Gruskin was walking, but a neurological examination was inconclusive. Instead, the neurologist suggested that Rabbi Gruskin start taking medications given to Parkinson’s patients and if the regimen provided relief it would prove that Rabbi Gruskin had Parkinson’s.
Rabbi Gruskin took the neurologist’s advice with a healthy dose of skepticism and chose to avoid medication. But four years later, Rabbi Gruskin’s children intervened and insisted that he pay a visit to Dr. Stanley Fahn, a world class New Jersey neurologist and an expert in movement disorders.
“He took one look at me and said right away, ‘Yup, you got it, no question,’” recalled Rabbi Gruskin.
An incurable, neurodegenerative brain disorder that typically progresses slowly, Parkinson’s affects more than 10 million people worldwide, according to the Parkinson’s Disease Foundation. Those who suffer from Parkinson’s can experience motor symptoms including tremors, stiffness, balance issues and slowness of movement as well as other non-motor issues such as mood swings and sleep disorders. More than 60,000 Americans are diagnosed with Parkinson’s each year and because of its disproportionately high occurrence in Eastern European Jews, the Michael J. Fox Foundation for Parkinson’s Research recently launched a study to investigate the high prevalence of Parkinson’s in that demographic.
As luck would have it, Dr. Fahn was not just Rabbi Gruskin’s doctor but also the organizer of the World Parkinson Congress, an international conference held every three years that brings together scientists, physicians, health care professionals, caregivers and those with Parkinson’s to discuss cures and best treatment practices for the disease. Rabbi Gruskin noticed a flyer for the upcoming 2013 conference to be held in Montreal while at Dr. Fahn’s office and the first spark for his future organization was kindled.
“I used to go fundraising in Montreal so I decided I could hit two birds with one stone,” said Rabbi Gruskin. “My son and I could go to the congress and the rest of the time I could do fundraising.”
The conference provided Rabbi Gruskin with a fountain of information on living with Parkinson’s. He came home with a plan to incorporate a 50 minute exercise program into his weekly routine, which has been found to be beneficial to Parkinson’s patients. Rabbi Gruskin enlisted his children’s help to make sure that he didn’t slack off on days when his enthusiasm waned.
“The exercise brings up my mood and I have a feeling of accomplishment,” reported Rabbi Gruskin. “When I finish I am ready to take on the day.”
Hoping to make the most of the post-conference momentum, Rabbi Gruskin decided to contact support groups for Jewish Parkinson’s patients and was stunned to discover that none existed. Undaunted, he elected to start his own.
“Everyone seems to know a friend or a relative who has Parkinson’s and there is no question that it is more prevalent than ever,” said Rabbi Gruskin. “It was crazy that no one was doing anything.”
Sparks of Life, a non-profit organization to help Jewish community members with Parkinson’s, was officially launched this past March with a watchful eye towards the September 2016 World Parkinson Congress in Portland, Oregon.
“The congress only happens every three years and is an opportunity to see that there are things that you can do, that is research being done and that people are very passionate about it,” explained Rabbi Gruskin. “You leave there with a new burst of energy and I really wanted to get something going.”
While Rabbi Gruskin’s main objective was making arrangements for Jewish participants at the congress, he also organized Sparks of Life’s first event in June, an evening of support in Lakewood for Parkinson’s patients.
“My board thought it was a pipe dream and expected maybe two or three or even five people,” recalled Rabbi Gruskin. “I was hoping for 20. But 100 people showed up.”
Buoyed by the event’s success, Rabbi Gruskin turned his attention to the upcoming three day conference scheduled for the end of September. It took five weeks to make the necessary arrangements but Rabbi Gruskin was able to offer daily minyanim and kosher food for conference attendees.
“At the 2013 congress there were three frum people,” reported Rabbi Gruskin. “Me, my son and a lady from
Teaneck. This time, out of 3,700 people, we had 28 people coming from Portland, Long Island, New York, Lakewood, Chicago, Israel and Australia.”
Being able to make the conference accessible to the Jewish community was extremely gratifying to Rabbi Gruskin. “What makes this conference unique is that so many people who have Parkinson’s are there with their caregivers and they can talk to doctors and researchers who are the best in their field and speak to them and ask questions,” noted Rabbi Gruskin. “Everyone gains so much and gets a better understanding of what Parkinson’s is because they are getting information straight from the source.”
Currently, Rabbi Gruskin is busy planning more events for Sparks of Life in Lakewood and Brooklyn. Ultimately he hopes to create a gym with therapists, Parkinson’s libraries, a 24 hour hotline, respite programs for caregivers and more.
“We want to make a Chai Lifeline for the person who has Parkinson’s and their caregiver,” said Rabbi Gruskin. “That is my goal.”
Rabbi Gruskin has also been in communication with interested parties in Monsey and in Israel and hopes that like its name suggests, his organization will continue sending out even more life-giving sparks.
“I would love down the road to have branches in Los Angeles in Chicago but Rome wasn’t built in a day,” said Rabbi Gruskin. “I can only hope that the Ribono Shel Olam should give me the kochos and the health to be able to do it.”
Sandy Eller is a freelance writer who writes for numerous websites, newspapers, magazines and many private clients. She can be contacted at [email protected].