^^^^^^WARM GREETINGS FROM^^^^^^^^^^
Ivan Suzman 48/10 [log in to unmask]
Portland, Maine land of lighthouses 33 deg. F another snowstorm
***********************************************************
On Sat, 29 Nov 1997 17:36:38 -0800 [log in to unmask] (William R.
Nowell) writes:
>Hi Ivan,
>My name is Bill Nowell and I live in Lacey, Washington. I am planning
>some activities for the coming year and one of the projects is to get
>the governor of the state to issue a Proclamation. I have a message
>you sent out on Nov 14th 1997 talking about your success. I would
>appreciate you providing me with any information, tips, suggestions,
>material or advise that you think might help me in getting this
>project to a successful conclusion. I have no earthly idea on how to
>best start, except to maybe have an example of the proclamation. I
>look forward to hearing from you and appreciate your time, effort and
>support.
>
> I have followed your e-mail traffic and must say that I not only
>appreciate your fantastic work and accomplishments, but the
>outstanding role model you have become.
>
>Again, thanks for the great job and any assistance you can provide so
>I do not have to reinvent the wheel.
>Sincerely,
>Bill Nowell(57/2)
Dear Bill,
Perhaps fifteen of us in various states worked on Proclamations of
Parkinson's Awareness Month last spring. The idea started around the
Capitol, with Maryland and Virginia. The Virginian Proclamation was
posted to the list, and I took it from there.
Like any campaign, our success here in Maine was built on a
foundation of telephone calls. A number of my friends and caregivers
called the Governor's Office to support the effort. My support group
wrote Governor King before and afterward.
I worked steaily by e-mail with several women staffers in the
Governor'sOffice. I ended up modifying the Virginia language, and
presented drafts of it by e-mail myself, in consultation with PWP's and
CG's I knew had the time and energy to act as "sounding boards."
The Governor's office staff was just great. It din't matter that i
knew noone in his office when I started. I just "kept the faith," and
persistently but politely checked with Kerry Malinowski in Augusta.
Writing the Proclamation was a wonderful education for all of us. To this
day, people who visit me still MARVEL at the beautiful 11" x 17"
Proclamation I have displayed on my dining area wall, a high-traffic area
in a small house.
Once the call came through to me that Governor King would join as
the 3rd state, I worked both with his publicity people and with all the
support groups (APDA-affiliated)) in Maine, to set up two KEY events:
1 - A televised signing ceremony. This was well attended, including
Glenna Atwood, known for her authorship of Living Well With Parkinson's.
I wore a tuxedo and black tie for the ceremony!!
All three networks were there, but only one televised the actural
ceremony. This work, to get TV coverage, was intense, and draining, and
very difficult.
2.- Newspaper follow-up. I worked with George Neavoll, the Editor of
the Guy Gannett Comunications daily, the Portland Press-Herald. This
resulted in a GLOWING editorial that drew lots of attention. The only
problem was that it was not possible to maintain the momentum in the
printed media, and we Parkinson's people quickly faded away into the
background. In retrospect, it might have been better to have a planning
committee, so that we might have had some in-depth coverage of the lives
of Parkinsonians as features in at least one or two small, local, or free
newspapers, or at least in church or activist newsletters, as a
follow-up strategy.
The problem here is that I am unusually vocal, and we PWP's on
the whole, are just starting to feel our power as a politically
knowledgeable community. Most of us had no idea how public and visible
we MUST be to see change happen
For my own support and encouragement, I e-mailed the Parkison's LIst
many times, and also helped others in some of the midwestern states and
elswhere. Also, my caregivers would come into the apartment, and the
first thing we would do would be to talk about the daily PD news from my
Juno program.
We were all very excited up here in snowbound Maine. Among the
national organizations, the PAN staff were quite interested and
supportive, because this work bolstered the Udall Bill efforts at that
time. The NPF did not contact us in Maine. The APDA people in Boston
were very encouraging.
Eventually, we also got a Concurrent Resolution from the Maine
Legislature, introduced by my state Senator, Joell Abramson. He had the
President of the Senate point me out in the spectators' area, at the back
of the Senate Chamber floor, to add to the momentm. This Resolution
sailed through both the House and the Senate.
It took me by surprise to realize that I had done so much. I ended
up having devoted about six weeks to almost nothing else. It was time
very well-spent, and extremely rewarding.
Looking back on these events, I would say that it doesn't matter if
your pills are wearing off, wearing on, whether your face is masked or
smiling. The key thing is to have a Dream, and to keep your "Eyes on the
Prize." Anyone can see HOPE in a sparkling eye.
So, that's a thumbnail sketch for you of what I tried to do.. I
am posting the Maine state Proclamation for you IMMEDIATELY FOLLOWING ,
for you, Bill, and for anyone else on the LIst.
GOOD LUCK, and let me know how I might help you further.
Ivan Mfowethu Suzman
Portland, Maine
12/1/97 9 AM
XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX
(Forwarded Message/Parkinson's List - March 27, 1997-MAINE GOVERNOR'S
PROCLAMATION
We did it!! It's been lots of HARD work, and here it is!
Below is Gov. Angus King's Proclamation., for PD AWARENESS MONTH (April).
It arrived in my surface mail, today.
The SIGNING CEREMONY is Monday, April 7, 1997, at 10:45AM., Maine State
Capitol, Augusta.
WE all feel like this PROCLAMATION will help the UDALL BILL, and other
PWP and CG activists, educators and advocates.
Please continue to post the results of any efforts you are making to
get AWARENESS MONTH proclamations.
Sincerely yours,
Ivan Suzman
47/10
Portland, Me land of lighthouses Hale-Bopp comet in the western sky
****************************************************************************
STATE OF MAINE
P r o c l a m a t i o n
WHEREAS, Parkinson's Disease is a brain disorder that usually affects
adults over 40, although it can appear in younger patients; and
WHEREAS, more individuals suffer from Parkinson's Disease than multiple
sclerosis, muscular dystrophy and Lou Gehrig's Disease combined; and
WHEREAS, according to the American Parkinson's DIsease Association there
are approximately 1.5 million people in the United States diagnosed with
Parkinson's Disease, of which 7,000 or more are in the State of Maine;
and
WHEREAS, the symptoms of Parkinson's Disease - stillness, tremor,
slowness, poor movement, and difficulty with balance and speaking - are
often mistaken as a normal part of the aging process; and
WHEREAS, the cause of the disease is unknown, and antiparkinsonian drugs
can only control some of the symptoms of Parkinson's Disease for a short
period of time; and
WHEREAS, April 11 has been proclaimed to be World Parkinson's Day,
a day for all to recognize the need for more research and help in dealing
with the devastating effects of Parkinson's Disease; and
WHEREAS, increased education and research are needed to help find more
effective treatments and ultimately a cure for Parkinson's Disease, and
to provide more effective support programs and services to Parkinson's
DIsease patients, their caregivers and families,
NOW, THEREFORE, I, ANGUS S. KING, JR., Governor of the State of Maine, do
hereby proclaim April, 1997 as
P A R K I N S O N' S D I S E A S E A W A R E N E S S M O N T H
throughout the State of Maine, and urge all citizens to extend their
support for those struggling with Parkinson's Disease and the loved ones
trying to help fight the battle.
(State seal) In testimony whereof, I
have
caused the Great
Seal of the
State to be
hereunto affixed
GIVEN under my
hand at Augusta this twentieth day of March in the
Year of our Lord One Thousand Nine
Hundred and Ninety-Seven
(signed)
Angus S. King, Jr.
Governor
(signed)
Dan A. Gwadosky
Secretary of State
***********************************************************
