About the PUW > Ken Aidekman, Cofounder and Past Chair
Kenneth Aidekman is the co-founder of the Parkinson’s Unity Walk and an advocate for the Parkinson’s community. His guiding principle is that unity is a vital element in the effort to improve quality of life for people with Parkinson’s, and ultimately find a cure for the disease.
Ken began his involvement in Parkinson’s disease (PD) advocacy when he was forty thinking that once he reached the age of onset medical science would have Parkinson’s all but eliminated as a debilitating disease. Then In 2019 at the age of 66 he too was diagnosed. At least his years of involvement with the PD community gave him perspective and good advice like practice acceptance but never give up hope, reduce stress, have a good sense of humor and exercise like a son of a gun. So far, so good.
In 1993 Ken Aidekman read an article written by Ken Bernstein published in the Young Onset Parkinson’s Support Group of Massachusetts. It was the first time he had read a comprehensive article on the state of Parkinson’s science written in lay terms from the perspective of a person with Parkinson’s (PwP).
Aidekman contacted Bernstein and visited him in Boston where they talked for hours about recent history in the Parkinson’s community, especially the early onset PwPs who were highly motivated find a cure. Bernstein also introduced Aidekman to the online bulletin boards in the U.S. and around the world where ideas were shared freely, and new connections made. It was exciting to read Alan Bonander’s broad-ranging knowledge and advice, Joan Samuelson’s political news and Jim Maurer’s interviews with neuroscientists across the U.S.
Many others began to dedicate themselves to the movement to raise public awareness and fund research. It was easy to catch the fever of younger advocates who refused to accept a future that offered only negative assumptions about the future and few tools to help them fight their battles. They reached out to one another to strengthen their voice and gain influence politically.
Each of these advocates had their own opinion about what should be done, but all agreed there should be more federal funding for Parkinson’s Research. In the Summer of 1994, the Parkinson’s Action Network (PAN) led by Joan Samuelson arranged an advocacy training event in Washington, D.C. It was a three-day forum that taught the basics of advocacy and ended with a visit to each participant’s Congressional office.
The PAN Forum was a huge success. It was empowering to its participants and effective in organizing individuals into a constructive whole. It gave hope to many advocates who had never worked on a shared cause. It was also dynamic mini convention where ideas were exchanged openly and enthusiastically. As a result, Aidekman became the PAN coordinator for state of New Jersey and recruited a dedicated team. We knew the task at hand would take hard work, but we felt empowered and directed.
At a quiet moment during the tumult of the Forum, Margot Zobel introduced herself and talked to Ken about her plans to start a small walk in New York. She had demonstrated most of her life for causes she believed in. Now that she had Parkinson’s she figured it was only fair to walk for herself and others with Parkinson’s. She envisioned a charity / awareness-raising Walk in Central Park for the PD community that would include PwPs, their friends, families, and concerned doctors. The timing was right because we had rising expectations about new developments in neuroscience. The 1990’s had been declared “the Decade of the Brain”. Anything was possible!
Ken had little familiarity with fundraising or demonstrating but after the excitement of the PAN forum he decided he could apply some of his energy to Margot’s walk. It had been nearly four years since his father Alex Aidekman had passed after a long struggle with Parkinson’s. It felt right to do something in his memory.
Ken’s grandfather Harry Aidekman also had had PD. Only he had it in the 1930s long before drugs like Levodopa. Soon Harry could no longer manage his small dairy farm and spent the rest of his days in bed. Eventually the family had to send Harry to the Jewish Sanitarium for Incurables in Brooklyn. He lived out his remaining years in a state of near total paralysis from PD.
Ken had always harbored a deep fascination with the biology of the brain. As an undergraduate at Tufts University, he studied biopsychology, experimental psychology. He was no expert, but he could put together enough information about Parkinson’s to educate members of Congress who were unfamiliar with the nature of the disease and need for research.
After his father’s diagnosis Ken passed on information about the latest research in the field to his family. In the late 1980’s the Aidekman family undertook philanthropic initiatives to address the need for PD research. They invested in the Aidekman Center for Molecular and Behavioral Neuroscience at Rutgers Newark campus. They also established the Alex Aidekman Chair in Parkinson’s Research at Mount Sinai in New York. The first researcher to hold the Chair was Melvin Yahr, Alex Aidekman’s neurologist, and a renowned expert in PD. For years Ken met with Yahr annually to discuss the latest in research and clinical procedures. It was quite an education.
Ken Aidekman serves as an advisor to the Parkinson’s Unity Walk. He advised the board of World Parkinson Congress from 2016 to 2019. Since his early days in advocacy Aidekman has stressed the importance of unity in PD advocacy and in its leadership. Melvin Yahr had shared his displeasure about how the major PD organizations to resisted merging for parochial reasons. Because of this he refused join any one of them as a protest about his concerns.
The lead Sponsors of the Morris Udall Bill placed a heavy emphasis on unity in the face of members of Congress who had little time to sort through competing messages from multiple PD organization. Eventually, John McCain agreed to lead the sponsorship of the Udall Bill in honor of his good friend Moe Udall. But McCain’s help was predicated on the affirmation that we advocates work as one with a single, undivided message. If we could not, he would end his involvement. The decision to follow a single message was key to passing the Morris K. Udall Bill.
With the Udall Act in place and private fundraising for scientific research finally at more appropriate levels, Aidekman turned his attention to developments in physical therapy. The key concept was “plasticity”. Plasticity in neuronal cells is the phenomenon that allows healthy neurons to take over part of the function of nearby dying and dead cells. The classic example is how physical therapists can bring back function to limbs and muscles believed to be permanently damaged due to losing import connections. Examples are stroke and neurodegenerative disease.
It turns out that even older neurons can take on the function of nearby cells if necessary. Also, it is now understood that the brain continues to generate stem cells throughout most of life. These stem cells can learn to take over for lost cells. Neuroplasticity allows people to learn new behaviors and re-learn old ones. Without plasticity in the brain the therapeutic actions like high-speed cycling, boxing, dancing, yoga and stretching would have no effect on symptoms. Our muscles and the brain processes that cause movement can and must relearn movements once thought lost forever.
The concept of plasticity has led to a complete turn around in physical therapy for Parkinson’s. Where once PwPs were told to avoid high intensity activity for fear of falls and broken bones due to poor balance, today therapists encourage PwPs to push their exercise and stretching hard, but safely. It is helpful to extend muscle movement to maintain greater flexibility that can improve balance and lessen the risk of falls.
The Kenneth Aidekman Family Foundation supports Dance for Parkinson’s, the premier PD dance program in the country. It also supports the Parkinson’s Dance program at Mason Gross College for the Arts at Rutgers University. At Mason Gross students participate in PD dance classes, offering guidance and encouragement to PD dancers.
In 1977 Ken Aidekman co-founded Amio, Inc., a fine jewelry design firm. He looks back with fondness on his years creating jewelry designs in karat gold and precious stones.
In 1987 he co-founded Highview Capital Corporation, an investment firm in New Jersey.
Ken Aidekman enjoys collecting art. He has exhibited his own work in New Jersey art galleries. He has served on the board of advisors for the Tufts University Art Gallery and the Brodsky Center for Innovative Art and Editions at Rutgers.
He lives in New Vernon, New Jersey with his wife, Ellen Aidekman.