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The NPFOCC Office Building at 16520 Bake Parkway, Suite 120, Irvine, CA 92618
NPFOCC Upcoming Events
January 2014, Volume II, Issue 1
Table of Contents
Story
Page
NPFOCC Upcoming Events........................ 1
The NPFOCC Privacy Policy....................... 1
The Tremble Clefs Support Groups, both North and South Orange
County, will be attending a Music Therapy Retreat in Arizona on
Sunday, May 4th, through Tuesday, May 6th. They will be staying at the
Embassy Suites Hotel in Phoenix, AZ. The event will include six Tremble Clefs groups from the western US and will feature training sessions,
performances, and lots of fun. NPFOCC will be providing transportation to and from the event for the group of about 60 people.
The next seminar sponsored by NPFOCC will be occurring on FebruRead more on Page 2
Understanding How to Be Helpful............. 1
The NPFOCC Privacy Policy
Donations.................................................. 2
How it Affects You
North Orange County Tremble Clefs.......... 5
Like most non-profit organizations, NPFOCC has a privacy policy
that is on its website and also on the website of the National Parkinson
Foundation. The part of that policy that is most important to you is the
following: “All information transmitted to this NPFOCC Web site is
secure to the extent possible using existing technology. We will store the
information that you share with us securely and will take appropriate
steps to protect it from unauthorized access or disclosure. We will limit
Read more on Page 4
Parkinson’s Exercise Program Campaign... 5
Finding Balance in Giving and Receiving... 6
Book Reviews............................................. 7
Contact NPFOCC
Understanding How to Be Helpful
Phone: (949) 945-6200
www.npfocc.org
https://www.facebook.com/NPFOCC
Newsletter Editor: Janet Buell
Helping someone can be the most rewarding thing in the world. Nothing equals the pleasure that results from a successful attempt to help.
Those who act in some capacity as a “helper” know that one big success at helping can make up for a lot of little failures. In spite of the
successes, people with a strong intention to help others also know that
it can be a discouraging, frustrating, thankless job at times.
Send letters to the editor at the address
above or to [email protected]
For additional copies of this newsletter,
contact the editor
Helpline: English/Espanol
1-800-4PD.INFO
It can seem to us that people don’t really want to be helped, that they
don’t deserve help, that they just waste it or ignore it or need it so
constantly that helping them becomes exhausting. At moments like that
we can all end up longing for some quiet occupation where no one ever
Read more on Page 2
Page 1
NPFOCC Donations
Donations
Rand & Betty Hagelin
Linus & Arlene Buss
George & Marie Petressans
Vicki Ann Martin
Dian Chen & Yizhen Sun
Robert & Susan McMackin
William & Pamela Willis
Neil & Barbara Hickey
Shu-Ching & Cheng-Wei Lee
Juanita Tsu
R. & T. Bharat
C. & M. Hamlin
Dale Arlen Smith
George & Juanita King
Joseph & Sarah Nardacci
Deborah Kuryan
Raymond & Pat Zartler
Curt & Ann Herberts
Carl & Joann Goltermann
Beverly K Smith
Debra Ruby
Muriel Vancouvering
Wm Franklin & Emily Pierson
Robert & Vera Kuehnl
Jeanne P Siegel
Patricia & John Usyk
Benita Magbanua
Henry & Valerie Franzoni
Darek & Sophia Czechowicz
Understanding How to Be Helpful
(Continued from Page 1)
suffers or dies if we don’t succeed. People who work at helping
others deserve to get their batteries recharged regularly. It can be a
responsibility-laden task and those who do it deserve to be helped
when they need it.
Donations In Honor Of. . . .
Lawrence & Margaret Burkholder: Tremble Clefs
Al & Dorothy Spigarelli: Ralph Spigarelli
Vernon & Martha Trezise: Dave Escapite
Emma Rose Martin: David Martin
Maxine Strickland: Bob Voll
Donations In Memory Of. . . .
Lucille F Hoogesteger: Joe Lustition
Marilyn Rowe: Don Rowe
Jackie Lipton: Larry
Nancy Grant: Donald
Steven Scher: Stan Scher
Barbara Porter: Jerry
Mary Ferrell: Jack Hose
SCALE OF EMOTION
Exhilaration Enthusiasm Cheerfulness Interest Complacency Ambivalence Antagonism Anger Resentment Anxiety Fear Grief Apathy This Scale of Emotions, at right, is taken in part from a textbook
called Beyond Psychology—An Introduction to Metapsychology
by noted Menlo Park psychiatrist, Dr. Frank Gerbode. There are
many different philosophies or technologies that have a similar
scale. This scale is based on observation by thousands of trained
observers that people move up and down through a basic pattern of
emotional levels as their condition improves or worsens. For example a person who has always been very independent and strong
may begin experiencing disturbing physical symptoms that make it
difficult to remain active and eventually receive a diagnosis of Parkinson’s Disease. Such a person may, by nature, have been someone who
usually operated on this scale at a level of cheerfulness but the diagnosis
of a progressive neurological disorder plunges him/her to the level of
grief or fear where he/she may remain for a while. With some time and
a bit of help in the form of friends or professional counselors who let the
person talk freely about his/her feelings, the person will begin to progress gradually back up the scale. Depending on the quality of the help received and the magnitude of the loss, it may take months to regain a level
of cheerfulness on the scale, if it ever happens. The key to the scale is
high spirits, lively joy
eager interest, zeal
full of cheer, joyful
wanting to know, see, do, or take part
contentment
a state of conflicting feelings
active opposition, conflict
strong displeasure, wrath
feeling injured or insulted
troubled, worried or uneasy feeling
dread that danger or evil is near
great sadness, heavy sorrow
lack of interest or feeling
this: a person will not simply go directly
from grief back to cheerfulness. That
person will pass through each of these
emotions on the way. When the grief
begins to become exhausted, the person
may find him/herself feeling fearful.
After all, there is now an awareness that
life can dish out some cruel blows.
Read more on Page 3
Upcoming Events (Continued from Page 1)
ary 27th from 1:00pm to 4:00pm at the Elks Lodge in Santa Ana and will
feature Dr. Sandeep Thakkar of Hoag Hospital, a movement disorder
specialist. The primary focus of Dr. Thakkar’s practice is patient-centered
care for Parkinson’s disease. He believes in the importance of creating a
global awareness of the disease, and strives to stay current with all modalities of care throughout the movement disorders field.
Page 2
Sandeep Thakkar, DO
Understanding How to Be Helpful (Continued from Page 2)
The person may next pass through a
stage where he/she becomes less fearful but still manifests a lot of anxiety.
Next the person passes through the
more extraverted emotions. He/she may
resent fate and feel angry at God or the
doctors. Although the person is actually
improving, his/her behavior may seem
quite shocking to those around him.
Finally, if allowed to express the anger,
the person passes through that band and
hits a level of boredom, complacency,
and ambivalence. He/she has little interest in life but at least is not suffering
acutely. Eventually the person begins to
take more interest in life and may regain
his/her earlier emotional level. As the
disease progresses and other losses occur, the person may go up and down the
scale repeatedly.
One of the biggest barriers to being
helped is the lack of understanding of
those around the person of the fact that
he/she needs to pass through some very
unpleasant emotions on the way back to
happiness. It’s possible for most of us to
provide an understanding ear as a friend
or loved one passes through grief and
anxiety. We’re more than happy to listen
sympathetically and offer reassurance.
But when the person hits the emotional
bands that are harder for us to confront,
when he/she is angry, hostile, resentful or antagonistic, too many of us are
shocked and upset. If we were still able
to listen calmly, the person would continue to pass up through those emotions
but when we react in shock, it can drive
the person back down into grief and
prevent a full return to normalcy.
When you fully understand this emotional scale, it’s much easier to help
because you don’t take the person’s
anger and hostility personally. There
are things other than an illness that can
cause a huge drop on this scale. Any loss
may do it: loss of a job, a friend, an opportunity, or a divorce or failure. Painful
incidents, like accidents and operations
may also drive the person down the
emotional scale.
When life’s blows come too frequently, it becomes harder and harder to
make that journey back up the scale and so the person’s chronic emotional level becomes lower and lower. Eventually, the person can become
thoroughly fixed at one of the lower levels and a number of changes
occur when this happens. Where a person high on the scale wants to
survive and his/her efforts are directed toward that goal, a person who is
chronically low on the scale begins to want to succumb. Apathy seems
to offer relief from the pain. After that point, the person’s actions begin
to align with that desire to succumb. This is the point where a lot of
the losses you suffer trying to help someone enter the picture. If you’re
trying to provide adequate food and housing to people whose emotional
level is chronically low, because of their intention to succumb, they will
be unable to benefit from your help. Their housing is allowed to deteriorate, the help is wasted and you are left wondering why you bothered.
Any help at this point, other than the intensive compassionate listening
needed to raise their emotional state, will be largely wasted.
As long as a person is still able to move easily on the emotional scale,
even if he/she is still at a low level because of a recent loss or illness, that
person can be helped but when he/she becomes quite fixed on the emotional scale at a very low level because of repeated losses or illnesses,
then helping becomes very difficult. Someone who works daily at the
task of helping others should know this scale well for it makes the behavior of the person in front of you far more predictable and therefore easier
to confront and handle.
Help that works could be defined as follows: that action which furthers
the intention of the person being helped. If you do something for people
that actually assists them in following their own intentions, they will
perceive it as help, accept it, and be grateful for it. If your action conflicts
with their intentions, they will ignore it, waste it, or refuse it. Thus, if
they are stuck in a low emotional level and are trying to succumb, and
you are attempting to help them survive, they will not perceive your actions as helpful, will not be grateful for them and will not benefit from
them. Occasionally this fact will be masked. They won’t outwardly admit
they don’t want your help, but they will find a way to waste it.
This doesn’t mean, of course, that you go into agreement with their
intention to succumb and help them locate a gun to do themselves in. No
matter how warped their idea of help has become, you have to follow
your own ethical code and give only pro-survival help. It does mean that
with a better understanding of the situation, you might be able to help
arrange to get them the only kind of help they could benefit from at that
point. If you’re not trained to provide them with compassionate listening,
you would at least recognize that they needed that sort of help first and
possibly be able to help them get it. You would also learn to take it less
personally when they were unable to be easily helped, and you’d recognize that the failure wasn’t yours. Some people are simply very, very
difficult to help.
This information comes from the book, Emotional First Aid Manual,
by Janet Buell. Complimentary copies are available at the NPFOCC office or at our seminars and symposiia.
Page 3
The Caregiver’s
Luncheon
The luncheon was held in the beautiful Beckman Center.
NPFOCC sponsored a Caregiver’s
Luncheon in November. It will become
an annual event. The speakers included
an expert on caregiving to provide some
useful information and a comedian to
provide some fun. The event was held
at the Beckman Center in Irvine and
included a wonderful lunch. There was
no charge for the event and hospice care
was provded to anyone who needed it.
Caregivers play a vital role in the Parkinson’s community and NPFOCC wants to
do anything it can to provide them with
support.
The event provided a wonderful opportunity for caregivers to relax.
access to this information to those NPFOCC personnel with a need to
know. We educate our staff about their duty to protect your privacy and
provide training regarding the policy described herein.”
There are reasons why this privacy policy is important to you. According
to the Fundraising Non-Profit Resource by Tony Poderis, “Many nonprofit organizations exchange with other non-profits their mailing lists of
people served, i.e. their clients, users, patrons, etc. They do this for marketing purposes, especially in the arts and culture world. And it could be
said it is a good thing, in the spirit of cooperation and public service. But
all too often the exchange, or even the sale, of nonprofit organizations’
donor listings is practiced. This is a much different method of mutual
support, and it has its consequences. To many of us, such selling of our
donors’ names and addresses would, in essence, be a “selling out” of our
donors. It’s probably safe to say that most of them would take a rather dim
view of this practice.
NPFOCC will never sell or give your contact information to a commercial enterprise, another non-profit, or any other organization without
your express permission. Sharing between non-profits can be a good
thing to do. Non-profits collaborate with other non-profits when the op-
Page 4
The NPFOCC Privacy Policy
and How It Affects You
(Continued from Page 1)
portunity is there to obtain more money
from a foundation with a partnership
proposal. They share facility space with
fellow nonprofits, share equipment,
share program information, partner in
advocacy activities, exchange brochures
and other materials and, most of all, give
encouragement.
NPFOCC believes it is important to be
generous and care and share, but we will
never, ever give up our donors’ or community member’s names and addresses
to outside organizations.
The Tremble Clefs Start New North Orange County Group at
Emerald Court in Anaheim
The Tremble Clefs Group gave a
wonderful performance at Emerald Court.
Karen Skipper directs the Tremble Clefs’
Holiday Concert
Parkinson’s Exercise
Program Campaign
Jacquie Massing is searching
for a suitable space for an
exercise gym.
The Tremble Clefs are a support group funded by NPFOCC that provides
vocal exercise for people with Parkinson’s and their care partners. Led by
Karen Skipper, MT-BC, a Neurologic Music Therapy Fellow and owner of
Orange Coast Music Therapy, and accompanied by Claudia Gambino, an
amazingly talented pianist, the group has been growing so much it can no
longer fit in the large practice room at the Florence Sylvestre Senior Center in Laguna Hills. Because of this rapid growth and to make the drive
shorter for the many people with Parkinson’s in North Orange County, a
second Tremble Clefs group is beginning at the Emerald Court facility in
Anaheim, CA.
The Laguna Hills group, now called the South Orange County Tremble
Clefs, meet every Monday morning at 9:30 a.m. at the Florence Sylvestre
Center at 23721 Moulton Pkwy, Laguna Hills, CA 92653. The new North
County Tremble Clefs hold their first meeting on Thursday, January 16 at
9:30 a.m. at Emerald Court, 1731 W Medical Center Dr., Anaheim, CA
92801, in the 2nd floor in the Activities Room.
Although the groups will practice separately, they will often perform
together as they did on December 23rd at Emerald Court for the holiday
show. As can be seen in the photographs taken at the performance, the
group was in a festive mood. Two different reporters, one for the Orange
County Register and one from the Anaheim Independent News, covered
the event. Check out the article in the Register at the following URL:
http://www.ocregister.com/articles/tremble-595117-clefs-group.html
Joining the Tremble Clefs requires no auditions as the group is open to
all who would like to maintain the strength of their voices. Come to a
practice and join in the fun.
My big resolution for 2014 is to bring into existence a dedicated gym in
south/central Orange County that brings PD sufferers fun, pleasure and
physical wellness. But to make that come about, I need a little help from
your eyes, ears and brains. We need to find a 1500-2000 square foot site
in south Orange County that we can convert to a PWR4LIFE type of gym
(See www.pwr4life.org — I refer to ours as BRAIN PWR4OC). Our gym
will be used at least five half-days a week under the guidance of a specialist in Parkinson’s movement disorders (I have one in mind). A first piece
of equipment is already lined up; all we lack now is the place to put it.
What I need from you is your help finding a facility leasable for exclusive
Parkinson’s exercise use.
So-o-o, START LOOKING, EVERYBODY—and ask your realtor friends
or look on your own—for what may be available for non-profit use in
south O.C.’s public buildings, churches, business districts, shopping centers, etc. Let me know what you consider to be promising for our use and
I’ll check it out further. Email me your ideas and be sure to put ‘BRAIN
PWR4OC’ in the subject line. Have a great year!
Jacqueline G. Massing, [email protected]
Page 5
Finding Balance in the Giving and
Receiving of Help
With Parkinson’s Disease, as with most progressive conditions (including old age), there often comes a time when a person has to rely on others
for some assistance. For a person who has always been independent, that
need can make one very uncomfortable, especially if the need for help for
oneself does not seem to be equal to the ability to offer help to others. It’s
human nature for people to want to give as much as they receive. But when
one partner’s ability to help becomes diminished by physical problems, it is
often necessary to get very creative to maintain some balance between the
giving and receiving of help between partners or family members.
Here is an example of such a situation taken from an article in Today’s
Caregiver Magazine. The text of the full article is available at the following
URL: http://www.caregiver.com/articles/general/emotional_first_aid.htm
Helen had ALS, a progressively debilitating and usually fatal illness. Her biggest concern was not for her own future; it was for her husband, Frank, who
was performing more and more care-giving tasks. Helen was afraid that her
illness would have a crushing effect on her husband’s health and spirits and
she worried that her exchange with him would be out of balance.
Helen wanted to find a way to contribute something to Frank’s wellbeing and
she worked with a trauma counselor to resolve this issue. As she did so, she
realized that the illness might have robbed her of the physical ability to be of
help but she could still listen well and Frank certainly needed a good listener
as he struggled to care for her and worried about the future. Helen received
some training in how to be an attentive and compassionate listener and she
and Frank began having conversations each evening where she coaxed him to
talk about his whole life and about his concerns for the future.
It was a tremendous relief to Frank to be able to have the conversations each
evening. The couple’s close communication helped them work out a plan for
Helen’s care that was less stressful for her husband. Frank realized that the
most important moments of the day were the ones when they were talking on
a deep level and he continued to talk to Helen even after she had lost the ability to speak. At Helen’s funeral Frank described those conversations as some
of the happiest moments of his life.
It’s vital to find ways for an ill person to contribute to the wellbeing of
loved ones if it is at all possible. Even a very ill person may be able to learn
to listen well and compassionately. If you’re a caregiver, watch carefully for
signs that the ill person wants to contribute and then make the effort to
see if such a contribution is possible. If you are the person with a serious
illness, make an effort to see if there are ways to remain helpful in spite of
your illness. Enabling people to feel useful throughout their life is a tremendous gift to give them and finding a way to stay useful is a tremendous
gift to oneself.
Listening well is a way of being helpful that almost anyone can do. If you
would like to improve your ability to be a compassionate listener, read the
following information which is taken from a training booklet on compassionate communication.
Learning to Listen Well: There are three qualities essential in a person
who wants to be able to listen well. Those qualities are compassion, curiPage 6
osity and persistence. No matter how
much training you’ve had, if you’re
lacking in these three qualities, you’ll be
largely unable to listen well. No matter how little training you’ve had, if you
possess these three qualities, you’ll be
able to help your fellow man effectively.
We’ve all heard of people whose friends
turn to them in times of trouble because
they just know they’ll feel much better
if they talk to that person. Such people
have a natural ability to be interested in
others, non judgmental, and persistent
enough to hear someone out.
Compassion: In order to experience
relief from worries and traumatic incidents, people must be able to talk to you
very freely and openly—and feel safe
while doing so. Otherwise they won’t be
able to express the emotions, attitudes,
and feelings that are necessary to gain
relief. Consequently they won’t feel
much better after talking to you.
It doesn’t matter how awful a thing
they’ve done, or how ridiculous a thing
they’ve done, they need to know you’re
not going to criticize them or feel critical of them. Then they’ll speak freely
and not try to protect or defend themselves by withholding their communication. That’s where compassion enters
into it. If people feel—whether you’ve
openly expressed it or not—the least
bit of criticalness on your part, they’re
going to start defending their actions.
They’ll try to convince you that their actions really weren’t that bad or that they
were justified. Any time spent defending
their actions is time that won’t benefit
them.
Example
Alice had experienced the death of
her husband and she’d been unable to
recover fully from that death. Every
time she thought of that event, the upset
surfaced again. Alice had gone through
a whole gamut of emotions: anger, fear,
hostility, and grief. She was able to
express the grief but not the anger. Alice
felt that society frowned on a person
being angry at a dead spouse and her
Continued on Page 7
Finding Balance (Continued from Page 6)
anger was very strong. She was sure
that people would consider it wrong or
shameful if they knew how she felt. After
all, her husband couldn’t help dying.
But it didn’t help Alice to analytically
know that her husband didn’t choose to
leave her. The fact is that she was very
angry. A compassionate person helped
Alice finally express the anger and she
now feels tremendous relief.
If the person to whom you’re speaking
is known by you to be very compassionate, you’ll probably try expressing a bit of the anger and watch them
closely for their reaction. When you can
see they’re not horrified, shocked, or
critical, you’ll feel free to express a bit
more. Eventually, you’ll blow off all the
steam that’s necessary and feel much
better. The whole difference in whether
or not you’re able to work through that
cycle and get rid of those angry feelings
will be the level of compassion that you
perceive to be there on the part of the
person to whom you’re speaking.
Curiosity is the second trait that’s a key
factor in our ability to listen well. There
are some people who feel that curiosity
can be intrusive or upsetting. Curiosity
is upsetting when it isn’t coupled with compassion. If you’re feeling that
the other person is curious about you and that they have a critical feeling toward you or toward what they might find out about you, you’ll find
their curiosity or interest very upsetting. If you sense that the person is
compassionate, then the interest or curiosity isn’t upsetting. It is, in fact,
very reassuring and comforting.
All of us enjoy having someone show a genuine compassionate interest
in us. It’s a trait that makes it possible for us to open up and speak freely.
If you feel that the other person is bored or lacking interest in you or
what you’re saying, you’re not going to talk very much. If you can sense
that the other person has a very strong interest in what you are saying,
and that they’re compassionate, you’ll find yourself being able to express
those deep, dark secrets that have been hiding there way too long.
The last key factor is persistence. It sometimes takes a while to talk
through an upsetting incident. If you don’t have the persistence to get all
the way through the incident, then you might as well not have started. We
can’t plunk someone down in the middle of a traumatic moment, let that
person get all involved in it, and then not follow through long enough to
complete the process. Our intent has to be to take our friends or loved
ones all the way through.
If people got no other training at all but learned to be a little more
compassionate, show a little more interest, and a little more persistence,
they would have increased tremendously their ability to help someone.
It would make them better able to help their friends, their children, their
acquaintances, and their loved ones.
If you would like to learn more about how to be a great listener, check
out the book, Nonviolent Communication: A Language of Compassion by
Marshall B. Rosenberg, available in the NPFOCC lending library.
Book Reviews from the NPFOCC
Lending Library
Delay the Disease, Exercise and Parkinson’s
Disease by David Zid
This is a 70-page spiral-bound book published in 2007, written by David
Zid who is a certified fitness trainer. The book is on the library shelf of
our NPFOCC office and is available to borrow. Zid has put together a
thorough program of exercises designed to retard the progress of Parkinson’s Disease (PD). The book contains several testimonials as to the
effectiveness of the routine. On most pages of the book, there are three or
four pictures of Zid performing the maneuvers.
Patients are divided into three groups: In Level A, everyone should be
able to do these basic exercises which are done seated; Level B requires
more balance and stability; Level C is the most challenging.
The first group of exercises is called Wake Up Call. The neck, shoulders,
wrists, hands, and ankles are flexed, extended, and/or rotated. Groups B
Continued on Page 8
Page 7
16520 Bake Pkwy, S
uite 120,
Irvine, CA 92618
ADDRESS SERVICE REQUESTED
or C in addition move the lower extremities more vigorously, often in the
standing position. Vocal and facial exercises are also done. Zid has a chapter on balancing drills and he recommends that all of the above be done
daily.
Book Review
Next Zid discusses cardiovascular exercise. He says that if you could do
only one exercise, it should be to walk. In each group, the speed and duration should increase as tolerated. The walking should be done for 20 minutes. For the Level C group, he recommends one minute of high intensity
faster walking or going up a hill done twice during the 20 minutes.
Books are reviewed by
Alan Massing, M.D. and PD
Patient, and are available
to borrow from the
NPFOCC Lending Library.
Then Zid turns to strength training. “Everyone starts to lose muscle mass
at some point in life. PD patients tend to lose it faster,” says Zid. He feels
that free weights are good because they are portable and inexpensive but
some results can be obtained with machines in health clubs. These exercises should be done three times a week, starting with one set, gradually
increasing the weights, then going to two sets. Examples of some of the
exercises include chest press, triceps press, shoulder press and biceps curl.
On the days when weights are not used, he advises “core days” including
exercises that are between the shoulders and the knees. The last category
is called “night-time stretching” and the book includes seven examples.
A second edition called Delay the Disease; Functional Fitness for Parkinson’s, was released on December 15, 2012. There is also a DVD called
Functional Fitness.
This book lays out an ambitious program of exercise in a clear succinct
manner. Check it out.
Page 8
(Continued from Page 7)