NPFWNY Newsletter Winter 2013 - National Parkinson Foundation

Our Mission is to improve the quality of life for the Parkinson’s community throughout Western New York.
NPFWNY
Newsletter
January Ÿ February Ÿ March 2013
Edition 3 vol. 1
Theracycle
Aerobic
Exerciser
Article Headline
Goes
Here Now at Local JCC
TABLE
OF CONTENTS
Theracycle Study
Pg. 1
Evalyn’s
Departure
Pg. 1
Theracycle/JCC
Pg. 2
“Evalyn Flew
South”
Pg. 3
“Weekend
Sloth?”
Pg. 4
Chapter Grant
Award
Pg. 5
New Board Posts
Pg. 5
Valentine’s
Dinner/Dance
Pg. 6
O
Our
Mission
is
to
! Our Mission is to
improve the quality of
quality of
lifeimprove
for thetheParkinson’s
life for the Parkinson’s
community
throughout
community throughout
Western
New
York.
Western New York.
Machine proven to help with symptoms of Parkinson’s Disease
It has long been understood that exercise is a key
factor
inCreekside
battling Banquet
the effects
Parkinson’sThe corks will pop at 6:30 and
eld at the
Hall inofCheektowaga.
Disease. Now,
a form
cycling
haswill
proven
bearray of wines from the finest
festivities
will run
untilof9:30.
There
be a to
vast
highly effective
addressing
number
of be available. Music, delectable
wineries,
and broadinselection
of craftabeers
will also
symptoms.
A
research
study
by
Jay
Alberts,
Ph.D.
eats and great camaraderie will round out the night. A number of exquisite items
will
be on
hand for gift
and has
silentshown
auctions.
It ishighdefinitely and event that you don’t
at the
Cleveland
Clinic
that
want
to miss.
– and
that you
won’t.
cadence
cycling
onweahope
tandem
bike,
or “forced
exercise,” helped reduce rigidity, bradykinesia
Tickets for the Wine Tasting are $40 and
(slow movement) and lack ofaredexterity.
available by calling (716) 859-3342 or
Unfortunately, a tandem bike requires
that there the
through
website
at
always be a partner for these exercise
sessions.
Parkinsonswny.com. They can also be
The employment of a Theracycle, apurchased
motorized
from members of the PAWNY
cycling machine, eliminated for theboard.
need We
for hope
a to see you there!
part
partner while providing similar results. As a Parkinson's Disease therapy
treatment, Theracycle increases aerobic fitness and can provide high-cadence
cycling motion in a way that improves mobility for Parkinson’s Disease
patients.
Second Article Headline Goes Here
Rick Zakalik, Executive Director of the Jewish Community Center (con’t. pg. 2)
Atelli amputat verecundus concubine, quod Octavius iocari agricolae, et Aquae
Sulis circumgrediet catelli, iam umbraculi fermentet tremulus zothecas, semper
ossifragi comiter insectat fiducias. Plane quinquennalis cathedras frugaliter
miscere incredibiliter gulosus quadrupei. Perspicax ossifragi spinosus iocari
concubine. Augustus miscere tremulus zothecas.
Our Right-hand Woman Left
Perspicax catelli amputat adlaudabilis saburre, et pretosius rures circumgrediet
utilitas agricolae, etiam adfabilisOsaburre
fortiter
adquireret
adlaudabilis
fiducias,
ur friend,
cohort
and invaluable
secretary
quamquam umbraculi miscere catelli.
Gulosus
suis
senesceret
lascivius
catelli.
has decided to depart Western New York for
climes.
Evalyn
Katzfiducias,
has been
asset
Umbraculi insectat Aquae Sulis.warmer
Cathedras
spinosus
miscere
ut an
agricolae
to NPFWNY
and
the whole
Western
New York
celeriter iocari verecundus matrimonii.
Medusa
pessimus
frugaliter
praemuniet
Parkinson’s
community
for
years.
chirographi. Suis conubium santet rures. Matrimonii circumgrediet gulosus Her
retirement
became
official
at fiducias
the end
of
fiducias. Augustus amputat vix fragilis
chirographi,
etiam
saetosus
plane
December,
has
moved
with et
her
fortiter adquireret quinquennalis
concubine. and
Ruresshe
lucide
imputat
agricolae,
husband
matrimonii insectat satis saetosus
oratori.to the sunny state of Florida.
Please read the tribute to Evalyn that was
written by our past President, Pat Weigel. The
piece can be found on page 3. Best of luck,
Evalyn. We miss you already!
of Greater Buffalo, reached out to a Board member of
our NPF Chapter regarding the desire to help people
with PD and others with neuromotor disorders. On
the basis of a request by one of their Center members,
a PD patient, both the tandem bike and the Theracycle
were researched. Since the tandem bike requires twoperson pedaling, this was not a practical option. The
best alternative proved to be the Theracycle.
PD patient Steve Bernstein working with John Markey,
JCC Personal Trainer, and Connie Brignole-Silvashy, PT,
GCS, Allied Team Trained Physical Therapist
On the basis of this information, the NPFWNY Board
approved providing $1,500 towards the purchase of a
Theracycle. The joint venture between the Jewish
Center of Greater Buffalo and NPFWNY has enabled
the Theracycle to be available to PD patients and
others with neuromotor impairments. It is located at
the Jewish Community Center in Getzville, NY. The
Center is in the Benderson Building, 2640 North
Forest Road.
!
National Parkinson Foundation of WNY
5140 Main Street – Suite 303-154
Williamsville, NY 14221
(716) 218-1027
www.NPFWNY.com!
You do not have to be a member of the
Center to use the Theracycle. It is available
for everyone to use. Some insurance plans
that have a health club benefit will even
enable you to use the Center for free.
Because there is only one unit for everyone
to use, you will be required to make an
appointment for time on the Theracycle.
Just call 716 688-4114 ext. 367 and ask for
Ann Vorburger. And, while you’re at the
Center, why not check out their many other
exercise opportunities.
The weight room at the JCC
Our Board remains committed to using
funds that we have raised to benefit our local
PD community. We appreciate your support
so that we may continue to provide
educational and social activities along with
exercise opportunities in the WNY area. We
continue to run a weekly dance program and
a twice-weekly exercise program, all for free.
For more information about these programs,
please call 716 218-1028 and ask for Pat
Weigel.
The study mentioned in this article was
authored by Jay Alberts, Ph.D. It is titled
“The Cleveland Clinic Forced Exercise with
Theracycle Parkinson’s Disease Bikes – A
Cleveland Clinic Research Study” and was
published on August 12, 2010. The complete
study
can
be
found
online.
Evalyn Flew South
By: Pat Weigel
(This is a tribute to our recently retired Board member,
Evalyn Katz. Evalyn has been an invaluable asset to the
University at Buffalo Comprehensive Movement
Disorders Center. For much of that time, she was a
critical component of NPFWNY, facilitating Support
Groups; helping to organize and present events,
fundraisers and the annual Symposium; and acting as
our secretary. The immensity of her contributions is
difficult to measure, but it is a certainty that our
organization has become well-founded and successful
largely because of her presence.)
It’s funny when you involuntarily let your instincts take
over when hiring someone. I had the opportunity to be
part of the interview process when we were looking to
hire a Social Worker to care for our Parkinson’s (PD)
patients and families. As I reflect back to that day, Evalyn
brought her enthusiasm, energy and compassion to the
table. Over the last 5 years, she has shown that same
passion for her work, her life and for the patients and
family members she has cared for.
There were times when the challenges faced by our PD
patient population were most difficult to manage. Even
an energetic person can get worn out trying to sort out
serious family issues. Other times, when patients
experienced improvement in their health, for example a
new medication is tried or perhaps after DBS surgery, we
would all get to celebrate.
Evalyn was not afraid to work hard; she was always eager
to accept any new project or plan. She took the challenge
head-on and found a way to make things work.
Counseling her patients one-on-one left them with a
sense of well-being. She was not afraid to be honest,
especially when she believed it would help her patient.
Evalyn was not afraid to play hard as well. It was a
regular occurrence to sit across the lunch table from her
as she described her 100 mile bike ride the day before.
Her love of exercise kept her bouncing around our office
each day. It’s pretty quiet around here without her, and
we will truly miss teasing her about her New York accent.
Her sense of humor helped her deal with many sad
moments we have had with our PD patients. I remember,
at the beginning of her job interview, she explained that
her name was pronounced “Eeva-lyn,” and that
sometimes her patients called her “Evil-lyn.” She always
made us laugh. But the truth is, she was far from “evil.”
She is an angel who has helped so many patients feel
better.
Enjoy your sunshine and remember to visit!!
On Retirement: A message
from Evalyn
These past five years,
working
at
the
Comprehensive Movement
Disorders Clinic and with
the Parkinson’s community,
have been a wonderful
experience. I’ve met so
many dedicated, caring
people. I will cherish all my
memories and the people I have met along the
way. This is a writing that I use many times to
get me through endings and to enable me to
move on to new experiences.
People come into your life for a reason, a season
or a lifetime. When you know which one it is,
you will know what to do for that person.
When someone is in your life for a REASON, it is
usually to meet a need you have expressed. They
have come to assist you through a difficulty, to
provide you with guidance and support, to aid
you physically, emotionally or spiritually. They
may seem like a godsend and they are. They are
there for the reason you need them to be. Then,
without any wrongdoing on your part, or at an
inconvenient time, this person will say or do
something to bring the relationship to an end.
Sometimes they die. Sometimes they walk away.
Sometimes they act up and force you to take a
stand. What we must realize is that our need has
been met, our desire fulfilled, their work is
done. The prayer you sent up has been
answered, and now it is time to move on.
Some people come into your life for a SEASON,
because your turn has come to share, grow or
learn. They bring you an experience of peace or
make you laugh. They may teach you something
you have never done. They usually give you an
unbelievable amount of joy. Believe it, it is real.
But only for a season.
LIFETIME relationships teach you lifetime
lessons, things you must build upon in order to
have a solid emotional foundation. Your job is to
accept the lesson, love the person, and put what
you have learned to use in all other relationships
and areas of your life. It is said that love is blind
but friendship is clairvoyant. Thank you for
being a part of my life, whether you were a
reason, a season or a lifetime.
Weekend Sloth?
A week in
life
of a PD patient
By:the
Chris
Jamele
By: David Wolf
This past weekend was one of those that I dub a recovery
weekend. By the time Friday night came by I was beat,
physically and emotionally. I mean, I got home at 5:30 pm,
kissed the wife, went upstairs and fell asleep. She woke me
up for dinner 2 hours later, but the damage was done. Sleep
was going to be a problem. This is one of those sneaky little
problems no one takes seriously. You nod in the right places
when the doctor tells you about a strict regimen of
medications and that varying from the administration times
will do bad things to your internal clocks. Yes, clocks, not
clock. There are body cycles, med cycles, Parkinson cycles,
and, of course, sleep cycles. Messing with one messes with
all. I hope I can capture a typical example of such a week at
my house.
Taking dopamine 4 times a day literally has its ups and
downs, splitting a day into 16 waking hours and 8 sleep
hours that need to coincide with the Ons and Offs
associated with the body's expected dopamine intakes. My
medicinal clock then breaks down into 7:00 am, 12:00 pm,
5:00 pm and 10:00 pm. Note that these are 5 hour intervals
that my body has "gotten used to" seeing. If everything goes
according to this schedule, I can almost expect that an Off
will occur about 1/2 an hour before each medication intake
and the corresponding On will occur 1/2 hour after the dose
is taken. That leaves me with On periods from 8:30 am until
11:30 am, 12:30 pm until 4:30 pm, and 5:30 pm until 9:30
pm, or 12 hours On during my "perfect" 16 hour weekday.
This never actually happens.
So, let's add some reality to this and screw it up a little bit
by staying up until 11:00 pm. All of a sudden, my night
meds (some of which are supposed to keep me asleep) don't
wear off completely by 7:00 am and I miss the 8-hour sleep
I promised my body by an hour, so I am groggy. I take the
7:00 doses at 7:30 am because I spend too much time in the
shower trying to get my muscles working smoothly under
the hot water. Now everything is off. My Ons and Offs are
no longer centered around my med intakes. I am sure to get
an Off that stiffens my fingers and makes my forearms ache
and makes buttoning dress shirts an involved project.
The On comes on too late or too hard and I find my feet
tap dancing under my desk, so I have trouble staying in
my seat. Think of it as a horrible case of wiggly butt. By
the end of the day, I feel like Offs and Ons are
competing for attention, appearing indiscriminately and
firing in all directions. So much for the weekdays of
Monday through Thursday. There is always the
weekend.
Want to add some more reality into the mix: try my
wife's kind intent to let me sleep in until 11:00 am on
Saturday morning. (To get the real effect of this, you
almost have to read this in double time with the 1812
Overture playing in the background with the volume at
11).
I've now gotten 10 hours of sleep, so my mind is up and
alert, but I've missed my 7:00 am doses by three hours
so my body thinks it should be in the middle of an On,
but there is no peak of dopamine in my system, so my
brain is in Off. All of my extremities are buzzing, locked
in position and beginning to ache. Meals and lack of
food feelings fly by with abandon. I'm either not hungry
or grouchy by turns, and my stomach wants nothing
more to do with me. I try to calm the hurricane by
taking my doses at shorter intervals, dividing the hours
left in the day by the number of doses. Seven o’clock
becomes 11:00, 12:00 becomes 3:00, 5:00 becomes
7:00, and 10:00, 10:00 remains 10:00, but now there is
a show "we" really want to watch until 12:00.
Forget trying to keep track of Ons, Offs, dyskinesia,
bradykinesia; it’s a complete loss of the weekend. I'm
done, I ache, I'm covered in sweat and there is a huge
desire to pull the covers over my head and not come out
until spring. Sure enough a friend will call and ask how
I'm doing...
I console myself that at least I get back on track at the
end of the weekend, right? "But Honey, Dancing with
the Stars is on until 11:00pm..." Well, there is always the
workweek to get back on schedule.
Health Training Made Possible
With Chapter Grant Award
By: Chris Jamele
Board of Directors
NPFWNY
President
Robert Plunkett, MD
University at Buffalo Neurosurgery
VP of Strategic Planning
Gary Kurdziel, BA
Northeast Manager Medtronic, MBA Candidate
Treasurer
Colleen Kelley, B.S.
The Rocky Mountains near Denver, Colorado
NPFWNY is thrilled to announce that our chapter has
been awarded a grant through the national
organization. A rigorous assessment process preceded
the awarding of these grants, and NPFWNY became
one of only seven chapters nationwide to be awarded
this funding through the NPF Chapter Grant Fund.
These grants are intended to extend the outreach of
chapters into their respective communities, and they
are funded by National Sponsorships for Moving Day.
Our grant will be used to send a representative to an
Allied Health Professional Training in Denver,
Colorado. This three-and-a-half day training will bring
the latest and most effective treatment practices back to
Western New York to assist in treating PD patients
throughout the community.
Connie Jo Bish-Ziegelhofer will be representing our
chapter in Denver. Bish-Ziegelhofer is a board certified
physical therapist and has been practicing for more
than twenty years. Her association with NPFWNY
began approximately three years ago when a friend
introduced her to our organization. Back then we were
known as the Parkinson’s Association of WNY, or
PAWNY. Bish-Ziegelhofer is now a member of our
Program Committee, and she has been an important
part of our care programs.
Bish-Ziegelhofer has great ambitions for what she gains
in Denver. “I hope to learn the latest recommendations
for treatment for those with PD, particularly in physical
therapy. I hope to learn how to better collaborate with
other disciplines and colleagues in order to create a
better experience for people with PD and caregivers. I
also hope to network and make contacts with others
across the country and world who are interested in and
dedicated to treating people with PD and improving
their quality of life.” The conference will be held in
March. We are anxious to hear of what she learns.
Accounts Payable, Hodgson Russ, LLP
Assistant Treasurer
Linda Mosher
Retail Operations Analyst, First Niagara Bank
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
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
Directors
Victoria Glamuzina (Owner/Operator Georgetown Liquor),
Tom O’Donnell (Co-Founder Parkinson’s Association of WNY),
Lori Soos, MA, BSN, RN (Director of Health Services,
Niagara University)
Advisory Staff
Kimberly Trinidad, MD (University at Buffalo Neurosurgery
& Neurology Comprehensive Movement Disorders Sopecialist), Rick
Lipka (President Emeritus, Parkinson’s Association of WNY), Xilui
Li, MD (Dent Neurological Institute)
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 10, 5:30 – 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 2/4/2013
Moving Day Proceeds
Our kickoff Moving Day effort in
2012 was a great success. Our net
revenues from the event totaled
$59,779.37
We can’t thank all of you enough for
all of your assistance and your
participation!
For 2013, our goal is to raise
$85,000. We are always looking for
sponsors and volunteers! Interested?
Please contact us.
wnymovingday@gmail.com
Call Betty Thurston 716 393-3134
LINKED
TOGETHER NPFWNY
Parkinson’s Association of WNY
5140 Main Street – Suite 303-154
Williamsville, NY 14221
www.npfwny.com
(716) 218-1027
Place
Stamp
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