----------
Dear List,
Karen Bardo & I (Greg Leeman) decided a couple of months that it was time
to make a list of our commitments. It turned out to be quite a list. In
order to make our lives more manageable, we each had to make decisions as
to which commitments had to be eliminated. We both decided to unsubscribe
to the PD list because we did not have enough time to read the messages we
received each day. We miss all of you! The information, support, and
friendship we both received from all of you helped us a lot during a time
when we were struggling. At this point, we feel we need to focus our
attention and time on helping Maine PWP. But, when Harold Jones, a fellow
board member at the Maine Parkinson Society, forwarded Tom Kelley's e-mail
it reminded us of all the thoughtful and caring people who had become our
cyberfriends. We left the PD list rather abruptly, and just wanted to give
you an FYI as to what we have been up to.
One of the biggest pieces of the pie was and still is the Maine Parkinson
Society. It was established by Maine people with Parkinson's Disease (PWPs)
to improve the lives of people with Parkinson's Disease in Maine.
I am one of the people from Maine who decided it was time to help Maine
PWPs. After 10 years battling the debilitating symptoms of Parkinson's
Disease (PD), fearing that I would lose my ability to perform simple daily
functions (driving a car, personal grooming and dressing and cooking and
cleaning) before I reached the age of 37, I decided to see what my options
were to improve the quality of my life. What I found was a system not able
to provide information as to what surgical options were accepted by
insurance companies, what drug treatment options were available and any
other alternatives that might be worth trying.
After researching what was available and pertinent to my current
condition and demographic background, I found there were practical surgical
options and possible drug treatment improvements that could be accessed. In
the end I decided to have brain surgery, pallidotomy, to alleviate my
worsening symptoms. As a result, my quality of life has improved greatly.
Therefore, in an effort to help people know that this option and others are
available I decided to form the Maine Parkinson Society.
There are two other co-founders who have worked with me to obtain our
articles of incorporation, bylaws, 501 (c) (3) approval (all of which we
have acquired) and organizational development to date. One is Karen Bardo,
age 45, diagnosed 2 years ago and currently employed by the Wiscasset
School District as an administrative secretary. The other is her father,
Harold Jones, a retired C.P.A. and banker.The rest of our Board of
Directors are Peter Price, Vice President of Livada Securities, Ellen
Moscinski, Director of Social Services at the Maine Medical Center and
former Executive Director of the San Diego Parkinson Disease Information
and Referral Center, Dr. Leonard Kaminow, Neurologist at Maine Neurology
and Christine Bateru, Pharmacy Manager at Shop n' Save. They all are
wonderful people.
Our intent is to provide a better source of information by bringing all
concerned parties together to identify current problems, concerns or
obstacles in the existing information delivery systems. Then, further
discuss and develop solutions to these problems and provide a vehicle to
correct and streamline the overall current information process. Some of the
current problems include:
1) Maine is a large but rural state with a low population base. The
current support system is a casualty of a poor health care system that
financially can not support the resources (attract specialists) necessary
to provide even an adequate form of health care to PWPs . The trend looks
like it will continue as long as we have a gatekeeper system.
2) There is only one movement disorder/Parkinson's Disease specialist
practicing in Maine (on the southern border of the state).
3) There are not any neurosurgeons in Maine that perform the accepted
surgical procedures for people with Parkinson's Disease.
4) There are not any data collection methods being used to gather
information about patients backgrounds, medical histories or symptoms
management methods for treatment of Parkinson's Disease in Maine.
Possible solutions to these impediments include the following two
pronged approach:
A-Involvement
1) Involve the health care community by including all factions (Drs.,
patients, nurses and therapists) in the process of determining better
treatment methods and options to serve PWPs in Maine.
2) Establishing a "think tank" to identify, discuss and develop
alternatives for a better treatment system for Parkinson's Disease.
3) Organize and provide seminars, round table discussion and local
classes for the health care community to gain knowledge of and disseminate
the newly formed treatment methods for PWPs .
B-Communications
4 Improve an established Maine Parkinson Society Web presence through
upgrades of its design and accessibility capabilities by adding a unique IP
address and domain name.
5) Design, publish and deliver a quarterly newsletter with current
information on drug and surgical treatments, research news and features
about the Maine PD community.
6) Work with the established APDA support groups to establish an
outreach program that includes a database and will increase efforts to find
local PWPs in Maine and deliver current information to them.
Currently we have projects scheduled for 1999. Some of these include:
The following events are co-sponsored by the APDA and MEPS.
1) World Parkinson's Day, Saturday, April 10th at Dana Auditorium
(Maine Medical Center) in Portland. Invited guests and speakers include:
Senator Olympia Snowe, Dr. John Growden - Movement Disorder Director at
Mass. General Hospital/Harvard University, Dr. David Roberts - Neurosurgery
Staff at Dartmouth Hitchcock Hospital and a special keynote speaker whom
will be announced as soon as details are complete.
2) APDA Maine Conference in September of 1999 at the Sonesta Hotel in
Portland. More details will be forthcoming.
The following event is sponsored by MEPs.
3) The sale of Tulip Bulbs and Tulip Pins for our adopted symbol of
hope. More details will be available at a future date.
As you can see, we have quite an ambitious agenda. We hope to make a
difference in Maine for PWPs.
Respectfully,
Maine Parkinson Society (MEPS)
Greg Leeman - President
Karen Bardo - Vice President
