In the summer issue we ran a story about the New England Parkinson’s Ride, an annual event which donates proceeds to the Michael J. Fox Foundation. This issue I will focus on two other groups which have raised funding for either national or local PD efforts.
The Maine Parkinson Society (MEPS) is currently headquartered in Bangor and is a 501(c)(3) charitable organization with a mission “to improve the quality of life for an estimated 7,000 Maine people affected by Parkinson’s disease (PD). This is achieved through educational programs, by providing respite care services to health care workers and caregivers who work with people with PD, and by funding other programs that work to find the cure.”
MEPS has worked to spread information since its beginning. The Secretary of State accepted the group’s articles of incorporation in July 1998. Per the Lewiston Sun Journal, at the time, PD was known as the “disease of the invisible,” and interviewees noted that funding for PD research ranked 32nd, “just ahead of sleep disorders.” They stated that amount of money was equivalent to only six percent of the total directed to AIDS research. The article reported, “The Maine Parkinson Society is intended to provide greater visibility and to improve service to victims of the disease.”
At that time, MEPS was based in Portland and the original president of the group was Gregory Leeman, a human resource director of Blue Rock Industries, who was quoted as saying there were then no movement disorder neurologists in Maine. He despaired as a PD sufferer, “the variety of drugs used for treatment adds to the confusion It is difficult, even when you keep daily charts as most of us do, to find a smooth drug regimen. It all adds up to a roller coaster ride that leaves patients in an emotionally drained state.”
Vice president of that first board was Karen Bardo of Alna, who worked as an administrative secretary in special education. She had been diagnosed just two years prior and was reported to be the glue that had kept the effort to form MEPS going. Ms. Bardo kept up that enthusiasm for several years, and would later serve as MEPS president. Other initial members included treasurer Leonard Kaminow, M.D. (then and now in the practice of neurology in Scarborough), and secretary Harold Jones of Augusta. Of note, Mr. Jones, the father of Karen Bardo, would also go on to become president of MEPS for a time, and passed away due to complications of heart disease in December 2008. A touching portrait of his life was published in the Kennebec Journal, and in the winter 2009 edition of the Maine Parkinson’s Pages.
MEPS hosted many activities over the years to raise both awareness of PD and funds for the mission of the group. Often, MEPS worked in collaboration with the already-established Maine Chapter of the American Parkinson Disease Association (APDA), which had been a long-time fundraiser and helped to organize support groups throughout the state.
At first, however, it was not clear the two groups would work together. The Maine APDA president for 25 years was Carl Barker, who retired from that role in 2009. Barker, interviewed by phone, looks back on those days and notes, “at first I didn’t see the need for the two programs, and I thought that they ought to join us. But, when it became clear that they wanted their money to remain in the state, to help people with respite and other projects here, we worked together.” Barker notes “people who wanted to give money for research were encouraged to give to the APDA as MEPS had no channel for that.”
That they did work together seems evident. Each organization hosted a variety of their own fundraisers such as bowl-a-thons, walk-a-thons, auctions, and the like. For several years, they also collaborated on events such as the seminar for Parkinson Disease Awareness Day each April. In 2000, for example, the Bangor Daily News reported on the seminar, which was held in Augusta. Speakers included general neurologist Dr. Bernie Vigna of Bath (who passed away last year), and Dartmouth-Hitchcock neurosurgeon, Dr. David Robert, who covered surgical options including deep brain stimulation. Quotes by Parkinson disease sufferer Viola Macomber were moving. She had expressed uneasiness about attending but apparently found the meeting very helpful when she stated, “This is incredible! He’s describing me right down to my fingers locking, that I’ve blamed on arthritis.”
That Spring, the Lewiston Sun Journal reported another collaboration: the APDA and MEPS were “working together to bring a full time PD specialist to Maine so that patients will no longer have to drive to Boston for treatment.” To attract a movement disorders doctor, the groups applied for grant money to set up an information and referral center. In July 2001, the Bangor Daily News announced the opening of the American Parkinson Disease Association Information and Referral Center (IRC) at Maine Health’s Maine Medical Center facility in Scarborough. Lillian Scenna, LSW, would become program manager that first year, and the IRC would eventually move to Bucknam Road in Falmouth for the duration of its existence. The office, primarily through the efforts of Lillian Scenna, would provide information about PD to the general public; coordinate educational classes; cultivate support groups; publish the Parkinson’s Pages newsletter; maintain a lending library of books; provide assistance using the internet to research health-related questions; maintain a specialized list of community resources for people with PD; manage the administration of the Respite Care Reimbursement Program; and many other outreach efforts to increase awareness and proper care for Maine people with PD. The IRC also fielded a lot of phone calls. Lillian Scenna estimated she took over a thousand calls per year from PD patients, and the top three questions were related to provider referrals, support group referrals, and medication side effects. She was a member of the boards of MEPS and APDA, and was active in the planning and execution of most PD related events in Maine.
MEPS and APDA also found success in 2002, when Ed Drasby, D.O., brought the specialty of movement disorders to Maine His practice evolved over time to include wellness in PD and participation in multiple clinical trials as a Parkinson Study Group site. Studies included, for example, a trial of the drug pimavanserin, which would go on to become FDA-approved for psychosis in PD April 2016. Dr. Drasby has been on the MEPS board of directors since coming to Maine, and was a board member of the Maine chapter of APDA. He was instrumental in building a PD community in Maine and, as an aside, very welcoming and helpful in getting me here. From the beginning, he asked me to be a part of these organizations. His help and introductions were much appreciated. Dr. Drasby retired from practice in October 2014, and though there are other movement disorders doctors in the State, I frequently hear from patients that he is missed. I suppose patients worry that I will feel diminished after such praises, as they are usually followed by something sheepish along the lines of, “no offense.” Rest assured, none taken.
Regrettably, due to cessation of funding in December 2013, the Maine APDA chapter ended and the IRC in Falmouth closed, taking with it the role of Lillian Scenna. These days, she is working with people with disabilities, helping them find jobs in her role as social worker at the Pine Tree Society. Though she is not directly involved in Parkinson disease, she notes her services might be helpful for people with young onset PD. “I still remember those calls,” she says.
MEPS is still going, with a full board presided over by long-time member Gary Cole. This April a fundraiser was an event was called STRIDE – WALK – JOG – RUN for Parkinson Disease, which took place at the indoor track of the Boothbay Harbor Region YMCA. Participants exercised any distance they chose, and endurance athlete Hunter De Garmo completed a 50K run. According to the Boothbay Register, Hunter’s mother has PD.
For more information about how to help MEPS, please visit their website at http://www.maineparkinsonsociety.org/. You can also find them on Facebook.
