May - National Parkinson Foundation Central and Southeast Ohio

Volume 33
Issue 5
May 2013
Mannitol Offers Sweet Future For Parkinson’s Disease
Researchers from Tel Aviv University describe experiments
that could lead to a new approach for treating Parkinson’s
disease (PD) using a common sweetener, mannitol.
This research was presented at the Genetics Society of
America’s 54th Annual Drosophila Research Conference in
Washington D.C., April 3-7, 2013.
Mannitol is a sugar alcohol familiar as a component of
sugar-free gum and candies. Originally isolated from
flowering ash, mannitol is believed to have been the
“manna” that rained down from the heavens in biblical
times. Fungi, bacteria, algae, and plants make mannitol,
but the human body can’t. For most commercial uses it is
extracted from seaweed although chemists can synthesize
it. And it can be used for more than just a sweetener.
The Food and Drug Administration approved mannitol as
an intravenous diuretic to flush out excess fluid. It also
enables drugs to cross the blood-brain barrier (BBB), the
tightly linked cells that form the walls of capillaries in the
brain. The tight junctions holding together the cells of
these tiniest blood vessels come slightly apart five minutes
after an infusion of mannitol into the carotid artery, and
they stay open for about 30 minutes.
Mannitol has another, less-explored talent: preventing a
sticky protein called α-synuclein from gumming up the
substantia nigra part of the brains of people with PD and
Lewy body dementia (LBD), which has similar symptoms
to PD. In the disease state, the proteins first misfold,
then form sheets that aggregate and then extend, forming
gummy fibrils.
Certain biochemicals, called molecular chaperones,
normally stabilize proteins and help them fold into their
native three-dimensional forms, which are essential to
their functions. Mannitol is a chemical chaperone. So like
a delivery person who both opens the door and brings
in the pizza, mannitol may be used to treat Parkinson’s
disease by getting into the brain and then restoring
normal folding to α-synuclein.
Daniel Segal, PhD, and colleagues at Tel Aviv University
investigated the effects of mannitol on the brain by
feeding it to fruit flies with a form of PD that has highly
aggregated α-synuclein.
“Sense of Smile”: An Excerpt from
Beetner’s New Book
By Michael Beetner
This is an excerpt from Michael Beetner’s new book “Avoid 1-Step
Stopping If You Have PD.” The book may be purchased on-line from
Amazon.com for $10.95.
I don’t know when my sense of smell left me and don’t
know if it happened gradually or abruptly. I imagine it happened some
time before I was diagnosed with Parkinson’s. Recently I read where some
researchers believe that loss of smell might be used as an early indicator of
the disease.
I thought they told us in school that taste and smell were related. I still
have, what seems to me, a good ability to taste things. This might lead you
to believe that inability to smell does not constitute a disability or pose
any harm. Well, gentle reader, please allow me to disabuse you of that
misinformation.
Several years ago, around the Christmas holidays, the family had to leave to
do something. There was ice about outside, which meant I could not go with
“New Book” continued on page 3
“Mannitol” continued on page 5
Platinum
Sponsor:
Silver
Sponsor:
President & CEO’s Letter.................. 2
Dr. Janet Bay joins Chapter Board....... 3
Artist of the Month......................... 4
Kroger Community Rewards............... 4
NPF Statement on the Economic
Burden of Parkinson’s Disease............ 5
Support Group Programs.................6-8
Regional Support Groups................... 8
Night Flight 2013............................ 8
7th Annual Car Show (Polaris)............. 8
Exercise of the Month...................... 9
www.worldpdcongress.org................. 9
Newsletter Renewal Form................ 11
Donations, Honorariums, Memorials.... 11
Moving Day 2013........................... 11
Free Classes....................... Back Page
In addition to Parkinson’s Awareness Month, April is also the
time for National Volunteer Week. The week is designed to
showcase the positive impact volunteerism has in increasing
capacity for many organizations. As a single paid staff
agency, the role of the volunteers is vital to the success of
the National Parkinson Foundation Central & Southeast Ohio
meeting our mission to provide support to individuals and
families affected by Parkinson’s disease.
All of our support groups are lead be a dedicated group
of volunteers. Each month, they coordinate the logistics
of meetings including securing speakers, confirming the
location, contacting support group members, and being a
resource for the community. The next time you attend a
support group (and if it has been a while since you have
attended one, make plans to go) make sure to thank your
facilitator for all they do.
Each month, nearly 3,000 newsletters are folded, tabbed,
have the mailing address added and sorted into bins for
delivery by a very dedicated group of volunteers. All of these
steps are done by hand, and in addition to visiting with some
great people, volunteers bring great deserts to enjoy as well.
If you have any time to join us, check page 3 for details on
when and where we will be meeting. Feel free to contact the
office if you have any questions. Any amount of time you can
give for this would be appreciated.
Behind the scenes, there are quite a few volunteers that
do so much to help. Karen Cantlon comes into the office
weekly to help with recording donations and memorials,
mailing letters to families, making deposits and preparing
the listing for the newsletter as well as a volunteer at our
newsletter folding. Susan Hervey is the point of contact for
our facilitators (and support group facilitator and newsletter
folding volunteer) providing the listing for our support groups
in each newsletter. Both Karen and Susan check the phones
and emails during my vacations, and have also been great
sounding boards for many ideas. James Arnett not only joins
us for the newsletter folding, but comes into the office to
help with various data entry tasks. Priya Small has been
working with us on a support group evaluation project; Panna
Flower is helping to file and organize many things within
the office and Vincent Pontius has been working with us on
grants, including the successful approval of a grant to begin
the evening Delay the Disease Exercise class. Ray Brahler
has been working with us for a long time on producing the
great materials for our Chapter, including the layout and
formatting of this newsletter, our print materials for our
Night Flight and Parkinson Car Show, our new informational
brochure and our Blue Book Series.
The successes of our events are due to the efforts of many
volunteers in planning and executing the Symposium (Chaired
by Janice Knasel), Night Flight (Chaired by Chris and Mark
Palumbo), Car Show (Chaired by DJ Coon and Chris Hamann)
and Moving Day (Chaired by Jerry Yarov).
Our chapter is lead by a dedicated group of volunteer
Board members. Over the past few years, they have been
instrumental in guiding the chapter to our current positive
momentum, and are working to develop a plan to continue
strengthening the chapter both financially and in our ability
to offer programs and services to the PD Community.
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Board of Trustees
National Parkinson Foundation Central & Southeast Ohio
Daniel E. Davis, MBA, CHES, LSW • President & CEO
2013 Board Members
Bryan Alltop, Nationwide Insurance • Board Chair
Jerry Yarov, Jerry Yarov & Associates • Chair Elect
Ernest Kreutzer, MD (Ret.) • Past Chair
Jason Jones, Stratagem CFO • Treasurer
Christine Palumbo, Worthington Industries • Secretary
Paul Bouchard • Community Representative
Joe Erb • The Political Network
Lori Wengerd • Home Care Assistance
David Zid • Columbus HealthWorks
National Parkinson Foundation Central & Southeast Ohio
2800 Corporate Exchange Dr., Suite 265
Columbus, OH 43231
Office Hours: Monday — Friday 9:00 — 5:00
Office: 614.890.1901 • Fax: 614.890.1904
Toll Free: 866.920.6673
www.CentralOhioParkinson.org
The Parkinson News is a monthly publication of the
National Parkinson Foundation Central & Southeast
Ohio. Comments, Suggestions, and Article submissions
may be sent in Word format, to:
[email protected], or mailed
to our office to the attention of: Dan Davis, Editor.
© 2013 National Parkinson Foundation Central
& Southeast Ohio. All rights reserved.
A non-profit organization dedicated to providing
support to individuals and families affected by
Parkinson’s Disease through support groups, education,
awareness and support of research.
This newsletter is not intended as legal or medical
advice nor to endorse any product or service. It is
intended to serve as an information guide.
We are always looking for volunteers to help us in a variety
of ways. If you are interested in giving your time and talent
in some way, feel free to contact me at the office by phone
(614.890.1901) or email to [email protected].
To all the volunteers who are doing so much to help, Thank You!
Have a great month.
Dr. Janet Bay joins Chapter Board
Professional Staff Affairs. A past president
of the Riverside Methodist medical staff,
she is also affiliated with Grady Memorial
Hospital in Delaware, OH.
The Board of the National Parkinson
Foundation Central & Southeast Ohio
voted to accept the nomination of Dr.
Janet Bay to the Board of Trustees at their
April 18, 2013 meeting.
Dr. Bay is the Vice President and
Lead Physician for Neuroscience at
OhioHealth. In addition to her knowledge
of neurological disorders to help with
information for community programs
and presentations, Dr. Bay brings skills in
Policy Development, Program Evaluation
and Education and Instruction. She serves
on both the Cleveland Clinic Alumnae
Board and the OhioHealth Senior operating
Council and has received recognition as
a YWCA Woman of Distinction, featured in Columbus’
Women’s Book in 2012 and Practitioner of the Year for
2013 from Columbus CEO magazine.
Dr. Bay was on staff for seven years at the Cleveland
Clinic Foundation, where she was head of the section of
neuro-oncology and Assistant Director of the Office of
She is a staff neurosurgeon at Riverside
Methodist Hospital of Columbus.
Dr. Bay received her doctor of medicine
degree cum laude from The Ohio State
University. Her surgical internship was at
the University of Michigan Medical Center.
After a year of neurology residency at
New York University, she completed a
neurosurgery residency at the Cleveland
Clinic Foundation.
The author of many articles and papers, Dr. Bay was
accredited by the American Board of Neurological Surgery
in 1983. Dr. Bay enjoys travel, standard-bred horses and
sports.
We welcome Dr. Bay, and look forward to her participation
and the addition of her skills to the Board.
“New Book” continued from page 1
them. I repaired to my office to do some writing. When
they did return, they (all women) said there was a strong
odor of natural gas in the house. Since I was bereft of my
olfactory senses, I hadn’t noticed.
The solution for my wife, other than replacing her
husband, was to buy a natural gas detector. These are the
size of a fire detector and would have sounded the alarm
before the situation got so out of hand.
I said that I would go outside and turn the main gas valve
off. The Mrs. vetoed that idea, based on the ice outside
and her perception that Parkinson’s had so addled my
brain that I might matters worse by turning the wrong
thing. Luckily, the man across the street was general
manager of a large plumbing company, and my wife
dispatched one of the children to fetch him at once. In
the meantime, she ordered a mandatory evacuation of
the premises. I was, allowing for the ice, ordered to go
no further than the front stoop. This showed that she
would rather see me dead than injured. At this juncture, I
quickly decided this was an inopportune moment to point
this out.
So, you should have a smoke detector (I can’t smell
burning homes), a carbon monoxide detector (no one can
smell this deadly gas), and a natural gas detector. The
only other requirement is a hearing aid, if needed.
Our friend ran over in his slippers and opened every door
and window he could find. He then tracked down the
source as the fireplace log lighter left ajar. He told my
wife that there was so much gas in the house that a spark
would have been a catastrophe for my house, my family,
and probably some of my neighbors.
Come Join Us
The monthly Foldin’ and Addressin’ will be Tuesday, May 21, 2013. Come join us at 11:00 AM or when you
can, and stay as long as you want at The Covenant Presbyterian Church (the corner of Redding Road and
Ridgecliff) in Upper Arlington. Bring a friend. The tasks involved are simple and easy. We usually finish by
3:30 PM. During that time everyone has an opportunity to chat and have a refreshment or two. The facility
is wheelchair accessible.
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PD Artist Spotlight: Phil Rowe
Dear Mr. Davis,
I have been a model railroader since 1966 and started in
the HO scale equipment. In 1998 I switched to the larger
O scale which is twice as big as the HO equipment and
was easier to see, the sight problem was not caused by
Parkinson’s but because I was simply getting older.
O scale differs from the Lionel trains
most people are familiar with in
that although the same size it only
has two rails instead of the three
rails which is more realistic for
modeling the prototype railroads.
The problem with these trains is that
they require assembly and periodic
maintenance and have very tiny parts
and screws. My Parkinson has affected
by left side which made it difficult
to work on these without making
adjustments in work habits and the
methods used to do the work. I have
altered most of my tools by bending
them or grinding them so that I
can rest my left arm on the bench
so it doesn’t get tired while trying
to solder wires and such items. On
projects that I do on a regular basis
(such as lubricating engines) I have
constructed a bench with an engine
cradle that is just above knee level.
The cradle holds equipment at a good
height for the work.
I enjoy the construction of buildings and bridges out of
plastic and still do although it takes me slightly longer.
My cuts aren’t quite as square as they used to be but the
projects still turn out looking very nice and I’ve gotten
compliments on several of them. One of my friends told
another friend that he really liked an industrial crane I’d
build from a kit and the other friend said it was no kit but
that I’d build it from scratch. I’ve
included two pictures of two current
projects.
I fight my Parkinson every day and
the nice thing about being a model
railroader is that I can see what
I’ve accomplished when I finish a
project.
Editor’s note: For the past few years,
we have invited artists of all mediums
to participate in our spring Symposium,
showcasing their talents and hopefully
inspiring other individuals with PD that
even with the disease, they still can
indeed pursue activities of interest.
Participants in the program have included
photography, jewelry, woodworking,
knitting, drawings, ceramics, writings,
paintings and sewing. We will be featuring
these artists in our newsletter and online.
If you have not participated in the past,
but would like to share your talents to help
inspire others, please feel free to contact
the office for information at 614.890.1901,
toll free 866.920.6673 or send an email to
[email protected].
Sign up or Re-register for Kroger Community Rewards
Are you signed up with Kroger Community Rewards to
support our agency? If so, it is time to re-register. If you
haven’t done so yet, it is very easy to do.
Visit www.krogercommunityrewards.com, click on
“Columbus, OH” and click on “Enroll” to register for
the first time. To re-register, go to the website and Sign
In. Please note: We are listed at Central Ohio Parkinson
Society, and our organization number 80568. If you need
assistance with registration, please call our offices at
614.890.1901.
4
The Kroger Community Rewards Program provides
financial support to area non-profits including the National
Parkinson Foundation Central & Southeast Ohio based on
the money spent at Kroger stores by members enrolled in
the program.
By linking your Kroger Plus card and shopping at Kroger,
you raise funds for the NPF Central & Southeast Ohio.
“Mannitol” continued from page 1
The researchers used a “locomotion climbing assay”
to study fly movement. Normal flies scamper right
up the wall of a test tube, but flies whose brains are
encumbered with α-synuclein aggregates stay at the
bottom, presumably because they can’t move normally.
The percentage of flies that climb one centimeter in 18
seconds assesses the effect of mannitol.
An experimental run tested flies daily for 27 days. After
that time, 72% of normal flies climbed up, in comparison
to 38% of the PD flies. Their lack of ascension up the sides
of the test tube indicated “severe motor dysfunction.”
In contrast, were flies bred to harbor the human mutant
α-synuclein gene, who as larvae feasted on mannitol that
sweetened the medium at the bottoms of their vials.
These flies fared much better -- 70% of them could climb
after 27 days. And slices of their brains revealed a 70%
decrease in accumulated misfolded protein compared to
the brains of mutant flies raised on the regular medium
lacking mannitol.
It’s a long way from helping climbing-impaired flies to a
new treatment for people, but the research suggests a
possible novel therapeutic direction. Dr. Segal, however,
cautioned that people with PD or similar movement
disorders should not chew a ton of mannitol-sweetened
gum or sweets; that will not help their current condition.
The next step for researchers is to demonstrate a rescue
effect in mice, similar to improved climbing by flies, in
which a rolling drum (“rotarod”) activity assesses mobility.
“Until and if mannitol is proven to be efficient for PD
on its own, the more conservative and possibly more
immediate use can be the conventional one, using it as
a BBB disruptor to facilitate entrance of other approved
drugs that have problems passing through the BBB,” Dr.
Segal said. A preliminary clinical trial of mannitol on a
small number of volunteers might follow if results in mice
support those seen in the flies, he added, but that is still
many research steps away.
Article adapted by Medical News Today from original press release.
Citations:
MLA
Genetics Society of America. “Mannitol Offers Sweet Future For
Parkinson’s Disease.” Medical News Today. MediLexicon, Intl., 9 Apr.
2013. Web. 10 Apr. 2013. <http://www.medicalnewstoday.com/
releases/258721.php>
APA
Genetics Society of America. (2013, April 9). “Mannitol
Offers Sweet Future For Parkinson’s Disease.” Medical News
Today. Retrieved from http://www.medicalnewstoday.com/
releases/258721.php.
NPF Statement on the Economic Burden of Parkinson’s Disease
National Parkinson Foundation (parkinson.org)
Release date: 2/21/2013
Parkinson’s Action Network (PAN) issued a press release today on
behalf of the U.S. Parkinson’s organizations, including the National
Parkinson Foundation (NPF). This is an important study because
it sheds light on the true economic burden of Parkinson’s disease.
Read the key findings below. Statement from NPF about the study:
“Things we could improve today are major cost drivers for
Parkinson’s. We pay over a billion dollars for services that
could be avoided with better care. For example, nursing
home care totals over $5 billion, and neurologist care
can reduce this by 20% or more. We could fund our entire
research agenda and more from the savings we could gain
by just getting patients great care,” said Peter Schmidt,
Ph.D., Vice President, Programs.“We’ve shown in NPF’s
Parkinson’s Outcomes Project, that many complications
can be avoided just through better, more expert care.”
Read the Parkinson's Action Network's press release:
$14.4 Billion Economic Burden of Parkinson's Disease Takes
Toll on Families
- $8.1 billion in medical expenses and $6.3 billion in
indirect costs attributed to Parkinson’s disease - Two new studies published in Movement Disorders detail
economic burden and financial implications of slowing
disease progression This statement is prepared on behalf of the American
Parkinson Disease Association, the Davis Phinney
Foundation for Parkinson’s, The Michael J. Fox Foundation
for Parkinson’s Research, the National Parkinson
Foundation, the Parkinson Alliance, the Parkinson’s
Action Network, and the Parkinson’s Disease Foundation.
Together, these organizations represent the Parkinson’s
disease community in the United States.
Parkinson's disease is a chronic, progressive neurological
disease for which there is no treatment or therapy to
slow or stop the progression of the disease. Medications
and devices address only the symptoms. Parkinson’s is
the second most common neurological condition after
Alzheimer’s disease.
The two studies addressed in this statement are:
"The Current and Projected Economic Burden of
Parkinson's Disease in the United States" and "An
Economic Model of Parkinson’s Disease: Implications
for Slowing Progression in the United States," both of
which were recently published in the journal Movement
Disorders and show huge economic burden on families
living with Parkinson’s disease.
Key Findings:
• The economic burden of Parkinson's disease is at least
$14.4 billion a year in the United States, and the
prevalence of Parkinson's will more than double by the
year 2040. ["The Current and Projected Economic
Burden of Parkinson's Disease in the United States"]
• Those with Parkinson's disease incurred Parkinson's related medical expenses of $22,800 per patient - $12,800 higher than someone without Parkinson's.
Approximately 57% of excess medical cost is associated
“Statement” continued on page 10
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Support Group Programs for May 2013 & June 2013
Please contact the facilitors listed to confirm the meeting is still being held.
ATHENS COUNTY
Second Tuesday of the Month at 2:00 pm
O’Bleness Hospital
June Safranek, 740.590.3243;
Ann Stemple, 740.593.8665
Regular exercises will begin 1:45pm,
before each meeting.
May 14, 2013
June 11, 2013
CABELL COUNTY
Third Tuesday of the Month at 6:00 pm
Cabell Huntington Hospital, 1340 Hal Greer Blvd.,
Huntington, WV
Teresa Sexton, 304.526.2695
May 21, 2013
June 18, 2013
COSHOCTON COUNTY
Third Monday of the Month at 11:30 am
Coshocton County Memorial Hospital
Bob Pingle, 740.622.6010
May 20, 2013 - Regular Meeting.
June 17, 2013
DELAWARE COUNTY
Third Wednesday of the Month at 1:30 pm
Delaware Township Hall, 2590 Liberty Rd., Delaware
Al & Barb Ulrich, 740.363.3841
May 21, 2013 - Jim Dietz, Esq., will be the speaker.
June 19, 2013 - Shannon Lindner, RN, Nurse
Practitioner, OSU,, will be the speaker.
DELAWARE SPEECH CLASS
2nd & 4th Monday of the month at 2:30 pm
Delaware Senior Center, 800 Cheshire Rd., Delaware
Contact Al & Barb for details
FAIRFIELD COUNTY
Third Wednesday of the Month at 1:00 pm Mills Memorial Church, 402 N. Broad St., Lancaster
Steve Wilson, 740.681.9310
May 15, 2013
June 19, 2013
FRANKLIN COUNTY
Upper Arlington Delay the Disease exercise class
Arlington Court Nursing Center
Wednesdays from 4:00 pm to 5:00 pm
1605 NW Professional Plaza, Upper Arlingtion
Contact: 614.545.2441
FRANKLIN COUNTY CENTRAL OHIO CAREGIVERS
Fourth Thursday of the Month at 1:00 pm
Panera Bread, 875 Bethel Rd., Olentangy Plaza
Open Discussion. ALL caregivers are welcome.
May 23, 2013
June 27, 2013
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EL DOPAS
Second Monday of the Month at 7:00 pm
The United Methodist Church, 600 High St., Worthington
Susan Hervey, 614.372.5360;
Kathy Hakes, 614.444.6517
May 13, 2013 - Care and Share Meeting.
June 10, 2013 - Elaine Freeman will lead a group
discussion on “Depression”,
June 23, 2013 - Picnic in Gantz Park, Grove City,
4—8 p.m.
EL DOPAS “PARKINSON PARTNERS”
Last Monday Every Other Month at 6:30 pm
Hunan Lion, Bethel Rd.
Maureen Haney, 614.451.0982
NOTE CHANGE IN DATE FOR JUNE
June 3, 2013 - Call Maureen for reservations.
All partners are welcome.
FORUM AT KNIGHTSBRIDGE
Second Thursday of the Month at 1:30 pm
4625 Knightsbridge Blvd.
NOTE DATE AND TIME CHANGE FOR APRIL
May 9, 2013 - Care and Share open to Persons with
Parkinson’s, Caregivers, Family and
Friends. Free range of topics relative
to the members.
June 13, 2013 - Care and Share open to Persons with
Parkinson’s, Caregivers, Family and
Friends. Free range of topics relative
to the members.
GROVE CITY AREA
Fourth Wednesday of the Month at 1:30 pm
E. L. Evans Senior Center, 4330 Dudley Ave.
John Corbett, 614.279.4984
May 22, 2013
June 26, 2013
HILLIARD AREA
TRADITIONS AT MILL RUN
Third Monday of the Month at 7:00 pm
3550 Fishinger Rd., Hilliard
Larry and Lois Schaaf, 614.889.8300
May 20, 2013
June 17, 2013
HILLIARD AT CARRIAGE COURT
Third Thursday of the Month at 10:30 am
3570 Heritage Club Dr, Hilliard
Kristina Powers, 614.529.7470
May 16, 2013
June 20, 2013
REYNOLDSBURG AREA
Fourth Thursday of the Month at 10:30 am
Reynoldsburg United Methodist Church
1636 Graham Rd.
Carmel Jenkins, 614.861.2571;
Maureen Patterson, 614.833.0980
May 23, 2013 - Program: What’s New in PD.
June 27, 2013
WESTERVILLE AREA
First Wednesday of the Month at 1:30 pm
Westerville Senior Center, 310 W. Main St., Westerville
Bev Phipps, CRNS, 614.882.9338
May 1, 2013 - Jackie Russell, RN, BSN, will lead
“An Exercise Q & A”.
June 5, 2013
MARION YOUNG ON-SET
If Interested in Forming a Support Group, Please Call
The NPF Central & SE Region Office, 1.866.920.6673.
MUSKINGUM COUNTY
Third Wednesday of the Month at 2:00 pm
Primrose Retirement Community
4212 Northpointe Dr., Zanesville
Martha Purkey, 740.450.4548
NOTE Changes for April Meeting
May 15, 2013 - Caring and Sharing Meeting.
June 19, 2013 - Regular Meeting.
HILLIARD YOUNG ON-SET
Call Jim Eder, 614.370.0204, for information.
MUSKINGUM COUNTY DELAY THE DISEASE EXERCISE CLASS
Every Tuesday from 10:00 – 11:00 am
North Terrace Church of Christ, Bowers Ln., Zanesville
Rhonda Forrestal, 740.455.5151
Anyone interested may call Martha Purkey for more
details: 740.450.4548.
GUERNSEY COUNTY
If Interested in Forming a Support Group, Please Call
The NPF Central & SE Region Office, 1.866.920.6673.
PICKAWAY COUNTY
If Interested in Forming a Support Group, Please Call
The NPF Central & SE Region Office, 1.866.920.6673.
JEFFERSON COUNTY
Third Friday of the Month at 12:00 pm
Eat & Park Restaurant, Ft. Steuben Mall, Steubenville
Judy Owens, 740.283.7210;
Barbara Penman, 740.282.5645
May 17, 2013 - Dr. Mary Mahalyo, Pharmacist,
will discuss drug issues.
June 21, 2013 - Regular Meeting.
ROSS COUNTY EXERCISE CLASS
Every Monday & Friday at 10:30 am
Also, every other Wednesday at 10:30 am
Chillicothe Fitness and Racquet Club
1245 Western Ave., Chillicothe
Misty Allen, 740.773.4928 or 740.779.3000
A Monthly Calendar of support group meetings and
exercise classes is available at the class.
KNOX COUNTY
Third Wednesday of the Month at 1:30 pm
Knox Community Hospital
1330 Coshocton Rd., Private Dining Room
Jason Mentzer, Rehab & Wellness, 740.393.9875
May 15, 2013 - Share Meeting.
NOTE CHANGES FOR JUNE
June 19, 2013 - Picnic at the Hiawatha Park East
Shelter from 3—5:30pm.
SCIOTO COUNTY
Last Thursday of the Month at 1:30 pm
Hillview Retirement Center, 1610 28th St., Portsmouth
Bill Miller, 740.574.4535
May 30, 2013 - A discussion on sleep problems is
planned.
June 27, 2013
KNOX COUNTY DELAY THE DISEASE EXERCISE CLASS
Tuesday & Thursday at 10:30 am
Waterford United Methodist Church
20595 Waterford Rd., Fredericktown
Larry Ratcliffe, Certified Trainer, 419.917.8020
Bill Burgett, 740.694.7425
LICKING COUNTY
Third Sunday of the Month at 2:30 pm
Licking Memorial Hospital, 1320 W. Main St., Newark
John Stover, 740.967.3809
May 19, 2013
June 16, 2013
MARION COUNTY
Third Friday of the Month at 1:00 pm
Marion Senior Center, 2375 Harding Highway East
Greg Darling, 740.383.4105
May 17, 2013
June 21, 2013
DELAY THE DISEASE EXERCISE CLASS
Second and Third Thursday of the Month at 1:30 pm
Berean Baptist Church, Family Center
Winchester & Bloom Sts, Sciotoville
Cliff and Carol Baser, instructors
UNION COUNTY
Second Tuesday of the Month at 1:30 pm
First United Methodist Church, Mill’s Lounge
207 S. Court St.
Betty Crowder, 937.747.3703 or 937.642.9418
May 14, 2013 - DVD topics “Getting to Know
Parkinson’s”.
May 14, 2013 - Potluck Cookout at the Crowders’,
18900 Smokey Rd, Marysville, at NOON.
Meat & Beverage provided. Ann Daniels
will provide music and senior comedy.
Continued on page 8
7
Support Group Programs for
May 2013 & June 2013
Please contact the facilitors listed to
confirm the meeting is still being held.
2
WASHINGTON COUNTY
First Saturday of the Month at 10:00 am
Redwood Restaurant, 2813 Washington Blvd., Belpre
Mary Ann Smith, 304.863.6234
May 4, 2013
June 1, 2013
Regional Support Groups
The support groups listed in this newsletter comprise
the groups in our region (Central and Southeast Ohio).
Information about groups throughout Ohio can be
found by contacting the various regions:
Northwest
Glenross Golf Club
231 ClubHouse Drive, Delaware, Ohio
800-438-5584 Toll Free
www.nwoparkinson.org
www.pfnwo.org
Saturday, July 13th
Northeast
6:30pm –Registration - 7:00pm –Dinner
800.630.3193 Toll Free
www.ohparkinson.org
Southwest
(Saturday, July 20th: rain date)
8:30pm –Shotgun start
midnight: team awards and silent auction finale
937.878.8608
www.ohioparkinson-southwest.org
Platinum
sponsor:
Silver
sponsor:
(614) 890-1901 | Toll Free (866) 920-6673
www.centralohioparkinson.org
[email protected]
8
Maintaining balance is crucial with Parkinson’s Disease. It is
important for fall prevention, improving your ability to walk and
pivot, and will boost your confidence as you navigate through
crowds and obstacles. As you work with this exercise plan, practice
making the moves difficult for you, challenge yourself. Remember,
work really hard while performing these exercises so that when you
are in the real world, everything will be easier. Always perform
these exercises in a safe place, i.e., corner of the room . Good
luck, and have fun with these. ~David
3 Second Heel-Toe Walk
Slowly walk using a normal stride length, but focus on a
very slow step with your heel striking first. Start with your
right foot. It should take 3 seconds from the time that
your right toe leaves the floor until the right heel touches
the floor. This will actually allow you to balance on one
foot in between steps. Concentrate on using the entire
3 seconds for each step; don’t hurry. Try to perform this
walk for 30 seconds, working up to 2 minutes.
Floor Tap
Stand with both feet close together. Squat down slowly,
touch the floor in front of you with one hand, then return
to standing position. Repeat 5 times each using hand.
Advanced Floor Tap
Stand with feet close together, hold a weighted ball or
other light weight in your hand, squat down and place
ball on the floor then return to standing position. Now
squat down to pick up the ball. Repeat 10 times while
alternating hands.
One Legged Floor Tap
While balancing on one leg, squat down slowly, touching
the floor, and return to standing position. If this is too
difficult, place a chair in front of you and squat down and
touch the seat of the chair while maintaining balance on
one foot. Repeat on both legs 5-10 times.
Advanced One Legged Floor Tap
If you really want a challenge, place a ball or light weight on
the floor in front of you. While balancing on one leg, squat
down, pick up the ball and stand back up. While maintaining
balance, place the ball back down onto the floor, then
return to standing position. If this is too
difficult, place the ball on a chair in
front of you to perform this exercise.
Repeat on both legs 5-10 times.
Partner Balance Challenge
Standing with your back to the corner. Using a rope or
a long towel, hold one end while your partner grabs
the other end. Standing with your feet close together
and slight tension on the band, pull against each other
attempting to pull your partner towards you and off
balance. Whoever can maintain their stance and not fall
off balance is the winner. Go 3 rounds with your partner;
have fun but perform in a safe environment. For a more
advanced form of this exercise, try performing with a
staggered stance or while standing on one foot.
Partner Ball Pass
Stand about 3 – 5 feet apart from your partner. Using a
weighted medicine ball, or a lightweight playground ball,
throw the ball to your partner. After a few tosses directly
at your partner, make this more difficult by throwing it
to one side or the other so as you catch you will need
to reach for the ball. Throw low and high, making your
partner stretch. Have fun, but do this in a safe place. For
a more advanced form of this exercise, try performing
while standing on one foot.
Driver Lunge with Balance
Stand facing a wall, about an arm’s length away with
arms down at your side. Take a big step forward with
the right leg while raising the right hand over the head
as high as you can. As you raise your arm, stare at your
hand continuously. Don’t take your eyes off of your hand.
Return leg and hand to starting position; repeat 5 to 10
times. Repeat on opposite side. Variation: perform above
lunges while alternating sides.
For additional exercise ideas, refer to our book and DVD Delay the
Disease – Exercise and Parkinson’s Disease which is available at
www.delaythedisease.com
Join us in Montreal at the Palais des congres to learn
about cutting edge research and evolving models of care
while raising awareness and increasing the quality of life
of people living with Parkinson’s.
Be a part of this unique international meeting bringing
together physicians, neuroscientists, rehabilitation
scientists, caregivers and people with Parkinson’s to
create a worldwide dialogue to help find a cure and best
treatment practices of PD.
Register TODAY!
http://www.worldpdcongress.org/
See you in Montreal.
9
“Statement” continued from page 5
with higher use of nursing home services. ["The Current
and Projected Economic Burden of Parkinson's Disease in
the United States"]
• The study also calculates an additional $6.3 billion in
indirect costs such as missed work or loss of a job
for the patient or family member who is helping
with care, long-distance travel to see a neurologist
or movement disorder specialist, as well as costs for
home modifications, adult day care, and personal care
aides. ["The Current and Projected Economic Burden of
Parkinson's Disease in the United States"]
• Among the population evaluated, one would expect
8,000 residents of nursing homes. The estimated number
in nursing homes is more than 103,000, representing
$5 billion in excess costs attributed to Parkinson's
disease. ["The Current and Projected Economic Burden
of Parkinson's Disease in the United States"]
• The Parkinson’s population incurred approximately
1.9 million hospital inpatient days in 2010, 73% more
than would be expected for a similar population without
Parkinson’s disease. Excess health-care use attributed to
Parkinson's disease in 2010 includes 1.26 million
physician office visits, 57,000 outpatient visits, 31,000
emergency visits, 24,000 home health days, and 26,000
hospice days. ["The Current and Projected Economic
Burden of Parkinson's Disease in the United States"]
• If Parkinson's progression were slowed by 50%, there
would be a 35% reduction in excess costs, representing
a dramatic reduction in cost of care spread over
a longer expected survival. ["An Economic Model of
Parkinson's Disease: Implications for Slowing
Progression in the United States"]
The following statement may be attributed to Amy Comstock Rick,
CEO, Parkinson’s Action Network:
"Both studies highlight the enormous economic
implications of this devastating disease, and make it
abundantly clear that increased research funding is a wise
investment on the front end to help significantly lower
or eliminate costs on the back end. National Institutes of
Health (NIH) Parkinson’s disease research funding for FY
2011 was just $151 million – that’s only 1.05% of $14.4
billion, and is clearly an investment that needs to grow.
"Because nearly half (48%) of medical expenses evaluated
in 'The Current and Projected Economic Burden of
Parkinson's Disease in the United States' are Medicareand Medicaid-related, smart investment in medical
research could significantly lower reliance on Medicare
and Medicaid as a safety net for people with Parkinson's.
Even slowing the progression of Parkinson's is shown in one
of the studies to have potentially a significant impact on
families living with this devastating disease.
"By investing in biomedical research both at the federal
level and in the private sector, and creating results-driven
public-private partnerships, the scientific community
can develop more innovative therapies toward better
treatments and, one day, a cure for Parkinson's. In
addition to research funding and strategic incentives to
promote collaboration and knowledge sharing among
academic and industry research groups, we need strong
federal, state, and local policies and programs in place
that improve the quality of life for people living with
Parkinson's and the impact the disease has on their
families.
"The authors of ‘The Current and Projected Economic
Burden of Parkinson's Disease in the United States'
acknowledge their findings are conservative estimates due
to limits in available data, and we agree that, in reality,
the prevalence and economic burden numbers are even
higher and will grow exponentially over the next few
decades. The silver tsunami of aging baby boomers will
bring not just a dramatic increase in Parkinson's diagnoses,
but also significantly higher cost burdens to families that
are already stretched too thin.
"Funding for Parkinson’s disease and all biomedical
research must be considered a priority in ongoing federal
budget discussions, and cannot be cut in any way, shape,
or form."
Ask The Doctor
Go to Parkinson.org and click on “View Our Video Library” under Ask the Doctor
10
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May 2013