John Baumann’s Inspiring “Nifty Nine” Daily Action Steps: Creating Your Own Personalized Plan to Live Life to the Fullest With (or without) Parkinson’s Disease M. Scott Peck starts out his monumental work, The Road Less Travelled, with three powerful words, “Life is difficult.” Difficult does not translate to bad, it just means that sometimes in life things do not come easy. Dealing with Parkinson’s is difficult. That sure is an understatement if I ever heard one. I describe myself as an inspiring, insightful, informative and oft-times humorous speaker who just so happens to have had Parkinson's for over a decade. In my life BP (before Parkinson's), I was an attorney, officer of a listed public corporation, and avid athlete. In my life WP (with Parkinson's), I am an inspirational speaker, author of several books, faculty member of the University of Louisville, guest commentator on CNN Headline News, Chair Emeritus of the Kentucky Make-A-Wish Foundation Board of Directors, and, most importantly, Bernadette's husband. I present here a novel and all-inclusive approach to living life to the fullest whether or not you have Parkinson's disease in the form of nine daily action steps.

1. NPFWNY
January Ÿ February Ÿ March 2014
Newsletter
TABLE
OF
CONTENTS
Sip the Night Fantastic
9th Annual Wine Tasting
April 25, 2014
Symposium
2014
Pg. 2
Golf Tournament
Pg. 2
Lawsuit Expands
Coverage
Pg. 3
Buttoning Shirts
a Snap
Pg. 3
Walking Classes
Offered Again
Pg. 5
David Wolf to the
Dogs
Pg. 5
Valentine’s
Dance
Pg. 6
Newsletters by
Mail
Pg. 6
Our Mission is to
improve the quality of
life for the Parkinson’s
community throughout
Western New York.
Edition 4 vol. 1
Delicious
wines, craft beer,
fantastic foods and great people –
all of the ingredients needed for a
marvelous evening. Please join us
for a festive night that has become
one of our most anticipated events
each and every year, and those
lucky enough will go home with a
wonderful reminder of the
evening.
An array of amazing items will fill the courtyard at the Millenium Hotel, all
of which will be available through both silent and ticket auctions. There will
be raffles for great gifts as well. Details for the event are still being
finalized, but save the date and spread the word to your friends and family.
This is night that you won’t want to miss. Check our website for updates.
New ED for Your PD Group
We
are extremely excited to announce
that Valerie E. Pillo has been hired as the
first Executive Director for NPFWNY. We
found Valerie through an extensive search
process, and she convinced us of her
talents and her vision through multiple
interviews. Valerie brings to the post an
awareness of Western New York - its
needs, its demands and its tight-knit
communities.
Valerie will help shape the future of
NPFWNY, as we look to more effectively
address the needs of our PD community.
Please join us in welcoming her.

2. Symposium
2014
As we bundle up against this chilly, snowy winter,
preparations are already being made for the 15th
annual Symposium that is scheduled for what we
expect will be a warm and sunny day in May.
If you’ve never attended the Symposium, it is a
wonderful experience that benefits anyone touched by
PD. Parkinson’s patients, families and caregivers can
all be accommodated. Over the years, thousands of
members of the Western New York Parkinson’s
community have benefited from the Symposium. And
it is FREE!
The Carl Jamele
Memorial/JJ’s Open
The 22nd annual Carl Jamele Memorial/JJ’s Open is
coming in June. This event has become a significant
fundraising event with proceeds going to benefit
NPFWNY. Last year’s rains made for a soggy day,
but we are anticipating wonderful weather for the
2014 tournament.
Golfers can sign up as single players, or in groups of
2,3,4 or more. There are beverages available on the
course, lunch and dinner are included, and everyone
goes home with a great item from our amazing prize
table. This really is a golfing experience that you
don’t want to miss!
Excitement is high for this year’s Symposium as our
newly hired Executive Director, Valerie E. Pillo, will be
addressing the audience. This will be the perfect
opportunity to meet Valerie and to learn her vision for
directing NPFWNY into the future.
At this time, the list of medical professionals speaking
includes Aldofo Ramierez, a doctor from Albany, New
York; Jan Feng, PhD, who will present information on
his research into PD undertaken at the University at
Buffalo; and Robert Plunkett, MD, who will offer his
expertise on DBS.
Shifting to the more immediate and personal, John
Baumann, a PD patient, will present “Reclaiming
Positive Perspective by Embracing Adversity,” and his
wife, Bernadette, will offer advice to caregivers.
Lunch will be included for all who attend, and a Q & A
session will follow the presentations so that anyone’s
concerns can be addressed.
This truly is an
informative, fortifying and energizing experience for
all involved. Registration is free, but seats are limited.
Be sure to reserve your places today.
May 17, 2014
Millenium Airport Hotel
2040 Walden Ave, Cheektowaga, NY
9 AM – 1:30 PM
For Reservations Call (716) 449-3795
Or “Contact Us” at www.npfwny.org
Chestnut Hill Country Club
1330 Broadway
Darien Center, NY
June 12, 2014
10 AM Shotgun Start
$125 per golfer
Please join us this year for a great day of fun,
camaraderie, and support for the local Parkinson’s
community. Maybe a thoughtful donation is more
your game. Either way, please feel free to call or
send a note.
Chris Jamele 716 860-2354 / c.jamele@gmail.com
Casa di Pizza (Chris or Joe Jacobbi) 716 886-8533

3. Lawsuit Expands Coverage
for PD Patients and Others
Are Buttons the Undoing of
Your Favorite Shirts?
By: Chris Jamele
By: Chris Jamele
A class action lawsuit, successfully filed against the
Have you found yourself getting ready for
work, that great night out, or simply a day
lounging around the house, but buttoning
your shirt is frustrating you and your
progress? Well, a caregiver has found a
creative solution to getting past this
hurdle. Maura Horton has sewn magnets
into the placket of her husband’s shirts,
making it easier for him to get dressed.
Center for Medicare and Medicaid Services (CMS),
will extend coverage for services required by patients
with chronic degenerative diseases, such as
Parkinson’s Disease.
According to a report from the Parkinson’s Action
Network (PAN), the suit struck at what had been
considered discriminatory actions against patients who
suffer from such illnesses as PD, Alzheimer’s and others.
The focus of the suit was a criterion in the requirements
for health coverage that was termed the “Improvement
Standard.” As described by PAN, the standard “required
Medicare beneficiaries to show improvement to
continue physical, occupational, and speech language
therapy services. For a degenerative disease like
Parkinson’s, therapy is not a cure, but it is a treatment
option that can improve the quality of life and help
maintain independence.”
The suit was settled in January of 2103 but gave CMS
until January 7th of this year to incorporate the legal
changes into their policy manual. The action also
requires that CMS establish a national educational
campaign to ensure that all representatives who make
decisions regarding Medicare coverage are aware of the
changes and are informed as to how to incorporate these
new guidelines in their assessments.
Anyone wishing to review the changes implemented by
CMS
can
do
so
by
visiting:
http://www.cms.gov/Outreach-andEducation/Medicare-Learning-NetworkMLN/MLNMattersArticles/Downloads/MM8458.pdf
The report issued by the Parkinson’s Action Network can
be seen at their website: www.parkinsonsaction.org
Model wearing a MagnaReady shirt
The magnets don’t take the place of
buttons, per say. The buttons remain on
the shirts, but they simply act as
decorations. The outward appearance
makes it looks as though the buttons serve
their intended purpose, but behind them
are magnets that are keeping Don Horton’s
shirts together. This creative solution
makes it far easier for Don to get dressed
and to look stylish all while allowing him
to continue wearing his favorite clothes.
For those who are handy with a sewing
machine, reworking shirts can be done at
home. If this is not an option, Horton has
established her own business, selling a line
of dress shirts that are already equipped
with magnets. Her company is called
MagnaReady, and there are You Tube
videos showing how the shirts work.
Horton’s website is www.magnaready.com

4. Supreme Court Protects
Provenience of Human Genes
By: Chris Jamele
The
Supreme Court was unanimous in its June decision
preventing firms from patenting human genes. This
outcome should open the door to greater genetic research
and, in some cases, less expensive medical testing for
patients.
Board of Directors
NPFWNY
Executive Director
Valerie E. Pillo
President
Robert Plunkett, MD
University at Buffalo Neurosurgery
Vice President
Victoria Glamuzina
Owner/Operator Georgetown Liquors
Myriad Genetics filed the case in question. The firm held
patents on a pair of genes isolated in their labs. Studies
showed that these genes were connected with hereditary
breast and ovarian cancers. Based upon research using
these genes, Myriad devised testing that indicates whether
or not a patient carries the genes, potentially foretelling the
presence of cancer in that patient. Because of the
proprietary nature of the patents, the testing was expensive,
costing as much as $3000 per test.
The Supreme Court argued, in a decision written by
Clarence Thomas, that human genes are not creations that
result from the efforts and expertise of a scientific
laboratory. Even though isolating a gene is an incredible
accomplishment, the Court argued that, in these cases, the
lab had not created something new, but simply focused on
genes that were still a part of nature. What appears in
nature cannot be patented, according to the decision.
VP of Strategic Planning
Gary Kurdziel, BA
Northeast Manager Medtronic, MBA Candidate
Treasurer
David Lever
Supervising Senior Accountant, Tronconi Segarra & Associates LLP
Secretary
Jennifer Jennings, DNP, MS, APRN, FNP-BC
Assistant Professor, Georgetown University School of Nursing and
Health Sutdies
Director of Patient Services
Patricia Weigel, RN
Clinical Nurse Coordinator, Deep Brain Stimulation, University at
Buffalo Comprehensive Movement Disorders Center
General Counsel/Legal Advisor
Harry J. Forrest, Esq.
Attorney with Gross, Shuman, Brizdle & Gilfillan, P.C
What can be patented are synthetic or manmade genes. The
Court drew a clear distinction between natural genes and
synthetic genes, which are created in a lab. Results
stemming from the research and testing involving these
synthetic genes can be registered as the exclusive property
of the laboratory.
What does this mean for Parkinson’s patients? Well,
nothing immediately. However, with the doors open for
numerous labs to pursue research on human genes and
with market forces able to keep medical testing costs down
for patients, this could bode very well as progress is made in
the research toward treatment and a possible cure for PD.
Information for this article was taken from “Justices, 9-0, Bar Patenting Human
Genes” in The New York Times.
http://www.nytimes.com/2013/06/14/us/supreme-court-rules-human-genesmay-not-be-patented.html
Director of Programming
Michele Youakim, Ph.D.
Clinical Assistant Professor, Department of Rehabilitation Services,
University at Buffalo
Director of Fundraising
Mark Burkard, RN
University at Buffalo Neurosurgery
Director of Communications
Christopher Jamele
Jamele Freelance Services
Director of Volunteer/Outreach Services
Susan Nichter, RPA-C
Buffalo Medical Group

5. Therapy and Guide Dogs
Walking Class to Begin Again
By: David J. Wolf
A
few weeks ago, the Southtowns Support Group had a
special visitor, Popeye, a therapy dog who is a pit bull and
American bulldog mix. After being introduced, Popeye
came around and made friends with everyone in the
room. If you think that the presence of a Pit Bull would
frighten you, that concern fades quickly. Popeye, it turns
out, is a professional 180 pound nuzzling machine who
was, himself, rescued and adopted by his trainer. That
night he made sure that he stopped by each person and
waited calmly to be petted or scratched. No one was
exempted from his attentions.
One
of the most popular exercise classes available to
the PD community is starting up again. Tiffany Regdos,
PT, DPT, runs the Walking Class at UB. She is also a
coach with the University at Buffalo track team. Tiffany
can be reached via e-mail: tam38@buffalo.edu
Details:
• Day/Time: Every Tuesday from 4 to 5pm
starting January 21st.
•
Where: University at Buffalo North Campus
Alumni Arena. Meet at the main gym (basketball
arena)
•
!
Parking: Parking is free after 3pm. Best place to
park is in the back of alumni arena (by the
football field). There is handicap parking in the
lot located right by the door of alumni arena.
•
Cost: The cost to use the jogging track is
$5/month. This allows you to use the jogging
track anytime you want! Also if you do not have
a metronome then the cost is $10 to buy one.
!
A pit bull and American bulldog mix
Popeye’s trainer explained the difference between a
therapy dog and a service or guide dog. The main
difference between the two is a legal distinction governing
where each is allowed to go. A service dog is permitted to
go with his trainer or partner anywhere, without
restriction. The ADA (Americans for Disabilities Act)
states that service dogs cannot be denied entrance
wherever their partners go, including grocery stores,
hospitals, classrooms or offices. And, in the case of
airplanes, no additional fee may be charged for their
passage. For all intents and purposes, the two are legally
considered a single entity.
Therapy dogs can be the same as a service dog but may be
restricted from certain venues. While a service dog
provides a single person with a full time companion and
helper, a therapy dog generally provides their
unconditional love and comfort to a larger group of
people. A therapy dog may come and visit several places
regularly, with or without being a full time companion.
Therapy dogs have been used for disaster and stress relief
in hospitals (Children's or General) as well as programs at
schools, where troubled or shy children read to the dogs
(Children Reading to Dogs or Tail Waggin' Tutors). The
use of therapy dogs has expanded to include assisted
living facilities or nursing homes and shelters. They are
also welcomed as home visitors for shut-ins and have
been well received by hospice.
Anywhere there is need of love, comfort, a cold nose or
just a good scratch, you can find therapy dogs in action.
“Aw Popeye, you’re my hero!” For more information on
therapy and service dogs, go to www.tdi-dog.org
What the class consists of:
• Walking for 20-30 minutes with the use of a
metronome. I will determine an appropriate
walking pace for you your first day. The walking
is self-motivated, and you can walk as long as
you like, taking breaks whenever needed. Family
members/friends are always welcome to
participate.
•
After everyone has finished walking, I direct the
group in balance and stretching exercises for 1520 minutes.
•
Sign up: If you are new to the group and want to
sign up all you have to do is show up any
Tuesday at 4pm. I will show you where to sign
up for the walking pass and introduce you to the
use of the metronome. If you can, let me know
ahead of time if you want to join so I can order
enough metronomes.
•
The jogging track is open to students/faculty or
members, so there will be other people
jogging/walking on the track during the class.
However, 4-4:30 tends to be less congested, and
walkers have to stick to the inner lane. If
members can only walk less than 100 feet at a
time, there are areas on the track they can walk
without people around them.

6. NPFWNY
National Parkinson Foundation of WNY
3143A Walden Avenue
Depew, NY 14043
www.NPFWNY.org
(716) 449-3795
Newsletters by Mail?
No Problem!
The Western New York Chapter of the National
Parkinson Foundation is creating a mailing list
to ensure that everyone who wishes to read our
Newsletter has the chance to do so. If you are
not on our mailing list and would like to be,
please send us an e-mail through our website,
www.npfwny.org
Don’t forget to check out our Facebook page and
to “Like” us. Our page is titled “National
Parkinson Foundation WNY.” We are always
interested in what you have to say. Please feel
free to drop us a line!
Save the Date!
Moving Day
September 7, 2014
See you there!!!
Non-Profit
US Postage
PAID
Buffalo, NY
Permit No.
4725
Valentine’s Dinner Dance
This annual event always proves to be one of the
most highly anticipated and most cherished
evenings of the year. If you’ve never attended – or
thought that your symptoms would prevent you
from attending, think again – this night is for you!
It is the perfect night for everyone to enjoy.
We welcome all patients, their families and their
caregivers. We hope to see you there!
Sunday February 9, 6:00 – 8:30 PM
Ilio DiPaolo’s Banquet Room (3785 South
Park Ave., Blasdell, 14219)
$10 per person (Dinner, soft drinks, cash
bar)
Reservations must be made by 2/3/2014
Call Betty Thurston 716 393-3134