Fall 2013 Newsletter - Vermont Chapter APDA

Fall 2013
VERMONT
PARKINSON’S
Advocate
Newsletter of the Vermont APDA Chapter and I&R Center
Gala Dinner to Benefit
Respite Care Fund
Inside:
Weight Training
LSVT Loud
Diet and Levodopa
Humor for Couples
Caregiver’s Corner
Spring Walk-A-Thon
Support Group
Directory
Please join us on Friday, Oct. 11, 2013,
at the Catamount Country Club in Williston, for dinner and an evening of laughter
as we raise funds to benefit the Dr. R.W.
Hamill Respite Fund!
Comedic actor Rusty DeWees will
call a live auction at this dinner to raise
funds for the Vermont chapter’s respite care
program that gives caregivers a break from
tending to loved ones with Parkinson’s
disease.
We are looking forward to Rusty’s
special brand of insight and humor to keep
the evening light and fun. As his website
biography says, “Rusty does it all and keeps
his fans and audiences laughing, as he puts
it, ‘till their backs get better.’ “
The American Parkinson Disease
Association’s Vermont Chapter’s biggest
expense is its respite care program. We have
been fortunate to receive some significant
donations in the past to help sustain this
program, but we need to raise funds to
continue to keep it going. While the anRusty DeWees
nual spring Walk-A-Thon is very successful,
part of the evening with some fantastic items
we are required to send those funds to the
up for grabs to the highest bidders.
national APDA office for research funding.
Cost is $75 per person. Advance registraAll of these funds will benefit families in
Vermont (and a few nearby locations in New tion/reservations are required and may be
York and New Hampshire). Neighbors help- arranged by calling Tara at 802-847-9485.
Please join us for this special evening!
ing neighbors.
We will also have a silent auction as
Contact Information
For information about
Parkinson’s disease, referrals
to support groups and
medical professionals, and
ideas for the newsletter:
APDA Information and
Referral Center
(802) 847-3366
or toll free (888) 763-3366
The Vermont Chapter
Board of Directors:
Maureen Vinci, President
Donna Atwater, Treasurer
Angela Corbin, Secretary
Members At Large:
Lyle Miller
Rachel Miller
Joe Belanger
Dan Morse
Melinda Morse
Rachel Johnson
Tara Spaulding Klyszeiko
Jean Baker
Shirley Jacobs
Trustees:
Michael O’Connor
Bill Brawley
Susan Werntgen
On the web:
www.parkinsonsvt.org
www.apdaparkinson.org
Weight Training Can Help Ease
Parkinson’s Symptoms
By Denise Mann
WebMD Health News -- Weight training
twice a week may reduce the stiffness,
slowness, and tremors often seen in people
with Parkinson’s disease, a new study shows.
A progressive neurologic disease,
Parkinson’s affects up to 1 million people
in the U.S. Symptoms include tremors and
difficulty with movement and walking. The
study shows that weight training for two
years trumps stretching and balance exercises
for these so-called motor symptoms.
In the study, 48 people with Parkinson’s
disease participated in a weight-training
program or another program aimed at
improving flexibility, balance, and strength.
Participants exercised for one hour twice a
week for two years. They were aged 59, on
average, and had had Parkinson’s for about
seven years.
Everyone saw benefits after six months, but
these benefits lasted two years among those
in the weight-training group.
Specifically, people in the weight-training
group saw a 7.3-point improvement after
two years on a measure that combines
symptoms of Parkinson’s into a single score.
“The three cardinal signs of Parkinson’s
disease are slowness, tremor, and rigidity,
and weight training will help all of these,”
says researcher Daniel Corcos, PhD, of the
University of Illinois at Chicago. “Our study
shows weightlifting twice a week is helpful
and you should try to work all of your
muscle groups.”
It is always a good idea to talk to your
doctor before beginning a new exercise
regimen.
“Anyone can do it, from the newly
diagnosed to people with advanced
Parkinson’s in wheelchairs. It is never too
late to start,” Corcos says.
People in wheelchairs may be able to
exercise their ankles using resistance bands,
for example.
SOURCES:
Stuart Isaacson, MD, director of
Parkinson’s disease and Movement
Disorders Center, Boca Raton, Fla.; associate
professor of neurology, Florida International
University Herbert Wertheim College of
Medicine, Miami, Fla.
Daniel Corcos, PhD, the University of
Illinois, Chicago.
American Academy of Neurology 64th
Annual Meeting, New Orleans, April 21-28,
2012.
(c) 2012 WebMD, LLC. All rights reserved
What is LSVT LOUD?
LSVT LOUD™ is an effective speech
treatment for individuals with Parkinson
disease (PD) and other neurological
conditions. LSVT LOUD, named for
Mrs. Lee Silverman (Lee Silverman Voice
Treatment – LSVT) was developed in 1987
and has been scientifically studied for nearly
20 years with funding support from the
National Institute for Deafness and other
Communication Disorders (NIDCD) of
the National Institutes of Health. Published
research data support improvements in vocal
loudness, intonation, and voice quality for
individuals with PD who received LSVT
LOUD, with improvements maintained
up to two years after treatment. Recent
research studies have also documented the
effectiveness of this therapy in improving
the common problems of disordered
articulation, diminished facial expression
and impaired swallowing.
LSVT LOUD improves vocal loudness
by stimulating the muscles of the voice box
(larynx) and speech mechanism through a
systematic hierarchy of exercises. Focused on
a single goal “speak LOUD!” – the treatment
improves respiratory, laryngeal and
articulatory function to maximize speech
intelligibility. The treatment does not train
people for shouting or yelling; rather, LSVT
LOUD uses loudness training to bring the
voice to an improved, healthy vocal loudness
with no strain.
Patients are trained to self-generate the
adequate amount of loudness to make their
speech understood. While LSVT LOUD has
been successfully administered to individuals
in all stages of PD, the treatment has been
most effective among those who are in early
or middle stages of the condition.
Couples Who Laugh, Last
By Peter Davison
They say that absence makes the heart grow fonder, but
research suggests that, actually, laughter is the glue that
really keeps couples together. Even with clear correlation
between laughter and sexual relations, sharing a laugh is
one of the top three reasons for the success of long term
marriages and it seems that laughter really is the best
medicine for individuals and couples alike.
We all know that laughing is good for us whether we’re
single, married or divorced. But let’s not forget how
important laughter can be for the Person with Parkinson’s
/ care partner relationship. Experts at Psychology Today
magazine suggest that the act of laughing can increase the
production of feel-good endorphins, reduce stress, ease
pain and even increase blood flow around the body which
in turn makes the blood vessels, brain and heart healthier.
Who would have thought that laughing can be good
for both the head and the heart?! But how can the act of
laughing benefit you and your partner as a couple? Here
are some ways in which good humour can improve your
relationship and help it to stand the test of time:
Diffuses tension
When a conflict arises in a relationship it can often
be minimised by gentle and respectful humour. Minor
niggles can be dealt with by a light hearted remark or
playful suggestion rather than serious confrontation as
people can become much more defensive when they feel
as though they are being attacked. Sometimes it can be
difficult to resort to laughter in the midst of a serious
argument or disagreement, but ultimately couples find
that embracing humour helps interrupt the power struggle,
ease tensions and enable them to gain perspective and talk
their disagreement through in a calmer, more rational
way. Humour may not be the way to completely solve your
problems but it can definitely set the scene for discussing
them in a more productive manner.
‘In-jokes’ strengthen bond
Psychologists suggest that being part of an ‘in group’ is
something we all subconsciously strive for to give ourselves
a feeling of ‘belonging’. Having an ‘in joke’ with your
partner is much the same. It enables you to share a private
sentiment that only the two of you belong to and fully
understand. This can ultimately strengthen your bond
in private and even more so in company. You identify as
being part of a pair with something in common. If this
is a playful, positive or humorous gesture then it further
reinforces the element of fun in the relationship.
Fun activities
Amidst the stresses and strains of everyday life with
Parkinson’s it can sometimes be difficult to find anything
to laugh about. This is why couples should try and
incorporate fun, laughable activities into their relationship.
Try something new even if it is totally out of your comfort
zone. If you approach it with good humour and your
partner at your side, if can’t go wrong. Even if it is an
activity that you don’t enjoy and will never do again,
you’ll still have had a positive experience from it trying it
with a willing and playful attitude. And if you and your
partner can find a common interest then it will give you
something else to bond together in. Try and set aside at
least a few hours a week where you and your partner can
do something fun as a couple and include a bit of old
fashioned physical laughter time.
Keeping positive
Life with Parkinson’s isn’t always a bed of roses and
there will invariably be times in your relationships with
care partners and family maybe even heath professionals
that have rough patches. Perhaps your troubles will
be confounded further by financial difficulty, family
problems or other stresses. During these tough times you
may not feel able to use humour as a mode of thought, of
but research suggests that looking upon your problems
in a positive, light-hearted way can actually provide you
with the mental tools you need to overcome them. The
physical act of laughter is medically proven to ease stress
and anxiety to give you the ability to think clearly and
rationally. Similarly, looking at things in a humorous light
can give you different sense of perspective rather than
becoming overwhelmed by your problems. If both you and
your care partner adopt this attitude in the face of trouble
then there’s no reason why you can’t overcome the most
difficult obstacles together.
When not to use it
Whilst laughter and humour are mostly positive aspects
of a relationship, there are times when people use humour
as a tool to cover up real issues and painful emotions in
their relationship. Perhaps they don’t feel able to articulate
their emotions in a serious way and so resort to basic
humour to try and get their point across. Ask yourself
if you’re making jokes in a humorous way of if they’re
actually indirect expressions of anger, irritation or even
helplessness.
In the big picture one truth remains: life is too short not
to laugh more, life is too long not to laugh more. For a
complimentary guide to the physical act of laughing, please
visit http://peterdavison.ca/laughmore.html
About the Author
Peter Davison is a motivational speaker who was
diagnosed with Parkinson’s disease at age 45 in 2005. He
is blessed to be enticed to laugh daily by his two young
children. He is author of the soon to be released book,
Gift of the Hit. For more information please visit www.
GiftoftheHit.com.
VT PD ADVOCATE Fall 2013
Vermont Chapter,
American Parkinson
Disease Association
VT PD ADVOCATE Fall 2013
On an airplane, an oxygen mask
descends in front of you. What do
you do? As we all know, the first
rule is to put on your own oxygen
mask before you assist anyone else.
Only when we first help ourselves
can we effectively help others.
Caring for yourself is one of the most
important—and one of the most
often forgotten—things you can do
as a caregiver. When your needs are
taken care of, the person you care for
will benefit, too.
Effects of Caregiving on
Health and Well Being
We hear this often:, “My husband
is the person with Parkinsons, but
now I’m the one in the hospital!”
Such a situation is all too common.
Researchers know a lot about the
effects of caregiving on health and
well being. For example, if you are a
caregiving spouse between the ages
of 66 and 96 and are experiencing
mental or emotional strain, you have
a risk of dying that is 63 percent
higher than that of people your
age who are not caregivers.1 The
combination of loss, prolonged stress,
the physical demands of caregiving,
and the biological vulnerabilities that
come with age place you at risk for
significant health problems as well as
an earlier death.
Older caregivers are not the
only ones who put their health
and well being at risk. If you are a
baby boomer who has assumed a
caregiver role for your parents while
simultaneously juggling work and
raising adolescent children, you face
an increased risk for depression,
chronic illness and a possible decline
in quality of life.
But despite these risks, family
caregivers of any age are less likely
than noncaregivers to practice
preventive healthcare and self-care
behavior. Regardless of age, sex,
and race and ethnicity, caregivers
report problems attending to their
own health and well-being while
managing caregiving responsibilities.
They report:
sleep deprivation
poor eating habits
failure to exercise
failure to stay in bed when ill
postponement of or failure to make
medical appointments for themselves
Family caregivers are also at
increased risk for depression and
excessive use of alcohol, tobacco and
other drugs. Caregiving can be an
emotional roller coaster. On the one
hand, caring for your family member
demonstrates love and commitment
and can be a very rewarding personal
experience. On the other hand,
exhaustion, worry, inadequate
resources and continuous care
demands are enormously stressful.
Caregivers are more likely to have
a chronic illness than are noncaregivers namely high cholesterol,
high blood pressure and a tendency
to be overweight. Studies show that
an estimated 46 percent to 59 percent
of caregivers are clinically depressed.
Taking Responsibility
for Your Own Care
You cannot stop the impact of
a chronic or progressive illness or
a debilitating injury on someone
for whom you care. But there is a
great deal that you can do to take
responsibility for your personal well
being and to get your own needs met.
Identifying Personal Barriers
Many times, attitudes and beliefs
form personal barriers that stand
in the way of caring for yourself.
Not taking care of yourself may be
a lifelong pattern, with taking care
of others an easier option. However,
as a family caregiver you must ask
yourself, “What good will I be to
the person I care for if I become ill?
If I die? Breaking old patterns and
overcoming obstacles is not an easy
proposition, but it can be done—
regardless of your age or situation.
The first task in removing personal
barriers to self-care is to identify what
is in your way. For example:
Do you think you are being selfish
if you put your needs first?
Is it frightening to think of your
own needs? What is the fear about?
Do you have trouble asking
for what you need? Do you feel
inadequate if you ask for help?
Do you feel you have to prove that
you are worthy of the care recipient’s
affection? Do you do too much as a
result?
Sometimes caregivers have
misconceptions that increase their
stress and get in the way of good
self-care. Here are some of the most
commonly expressed:
I am responsible for my parent’s health.
If I don’t do it, no one will.
If I do it right, I will get the love,
attention, and respect I deserve.
Our family always takes care of their
own
I promised my father I would always
take care of my mother
“I never do anything right,” or
“There’s no way I could find the time
to exercise” are examples of negative
self-talk, another possible barrier
that can cause unnecessary anxiety.
Instead, try positive statements:
“I’m good at giving John a bath.” “I
can exercise for 15 minutes a day.”
Remember, your mind believes what
you tell it.
Because we base our behavior on
our thoughts and beliefs, attitudes
and misconceptions like those
noted above can cause caregivers
to continually attempt to do what
cannot be done, to control what
cannot be controlled. The result is
feelings of continued failure and
frustration and, often, an inclination
to ignore your own needs. Ask
yourself what might be getting in
your way and keeping you from
taking care of yourself.
Moving Forward
Once you’ve started to identify
any personal barriers to good selfcare, you can begin to change your
behavior, moving forward one small
step at a time. Following are some
effective tools for self-care that can
start you on your way. There are
eight tools that will help you with
caregiving. These will be addressed
in the next newsletter so stay tuned.
Stowe Walk-A-Thon 2013
The 4th Annual Vermont APDA Parkinson's 5K
Power Run and Walk-A-Thon was held in Stowe,
Vermont on May 18th, 2013 on the recreational
path. It was a great year and we raised close to
$20,000 for Parkinson's research! A heartfelt thank
you goes out to our partners The Green Mountain
Inn, WCAX and WDEV, who helped make this a
memorable year. We are looking forward to our 5th
Anniversary next year!
Support Groups and Contacts
Bennington
3rd Thursday, 10:30 a.m.
2nd Congregational Church,
Hillside St. Bennington
Contact: Russ and Barbara Spies
(802) 442-0612
Brattleboro
2nd Tuesday, 6 p.m.
Brattleboro Memorial Hospital
Contact: Tiea Zenbauer
603-209-2625
[email protected]
Newport
3rd Tuesday, 10:30 a.m.
Contact: Sid & Estelle Burton
(802) 626-3707
Morrisville
Last Wednesday, 1:00-2:30 p.m.
Lamoille Home Health & Hospice
Contact: Amanda Shiverick
(802) 888-4651
Rutland
First Thursday, 4 p.m
Trinity Episcopal Church, West Street
Contact: Margaret Dick (802) 773-8447
or Lydia Thornblade (802) 786-5990.
Upper Valley Region
Kendal at Hanover
Contact: JoAnn Browning
(603) 643-9441
or Betsy Sanderson (603) 643-1798
Ticonderoga, NY
4th Thursday, 5:30 p.m.
Contact: Joan Miller (518) 585-2533
Burlington
3rd Wednesday
Allenwood, South Burlington
Contact: Jeanette Baker (888) 763-3366
CVPH
Contact Barbara Lichtig (518) 561-6549
or Joy and John Mazur (518) 561-3875
Central Vermont
Contact: Sharon Osborn (802) 439-5554
Seeking a support group? Interested in
forming a meeting closer to home? Contact
Jean Baker, RN, coordinator of the APDA
I&R Center at Fletcher Allen Health Care
and the University of Vermont: (888) 7633366.
VT PD ADVOCATE Fall 2013
Caregiver’s Corner: Taking Care of No. 1
First, Care for Yourself
RESPITE CARE
PROGRAM
Do you need help
with caring for someone
with PD?
The APDA Vermont Chapter
Respite Program can help.
Vouchers are available for
care in the home as well as some
adult day programs in Vermont.
Call the Information and Referral center for information or
to enroll
888-763-3366
Respite Care Fund
Dinner and Auction
Oct. 11, 2013
APDA Vermont Chapter
1 South Prospect Street
Burlington, VT 05401