Lecture Given at The University of Arizona Parkinson's Ethnography
Parkinsonians or "Parkies"are areserved group of people, the disease contributes to a decrease of out
ward expression (wooden face) and major decrease in energy for activity .More men than women
have Parkinson's the ratio with the groupshas been8 men out of 12 to 4 women.
Following isabrief description of the disease.
The most well known symptom of the disease is tremor,stiffness, freezing, (the inability to move) loss
of balance, all accompanied by lethargy.In Arizona there are approximately 35,000 people with pd,
over 1 million in the country; and about 60,000 are diagnosed every year.
Several medications help ease the symptoms until the disease progresses beyond the benefit of these
medications; thereis no cure at this time.
Parkinsonsonians are from all walks of life and various areas of the country.One of the things that are
being considered is the environmental source of the disease, or the genetics.It seems like it maybe a
combination of the two.With a genetic propensity that is activated environmentally.Most of the
Parkinsonian'sincluded in the case study are living with spouses; in homes in adult communities.Two
are living alone,also in adult communities.They usually get a diagnosiswheninability to do
some things getstoo difficult.
English is the spoken language, although some have foreign back grounds.And speech is an important
problem for the population.Both in the formation of letters to form words and volume to be heard.At
some point swallowingalso becomes an issue to deal with.It is not known how prevalent this disease
in non English speaking groups in this country.Not to be heard is very draining and depressing for the
Parkie.There are special voice training programs one such program is calledLee Silverman Voice
Training;this service is provided by the University it takes 4 hours, 4 days aweek for 4 weeks.The client is
trained tolengthen the exhale and to increase the volume but not scream.The first week is one word
lengthening, the second week is using a phrase, the third week is using a full sentence, and the last
week is using a paragraph.In addition to the therapy time there are home exercises the client must do.
This training has been approved as the most effective and long lasting.There are other modalities that
Occupational Therapists can provide.
A Brief History
The first exposure to this disease was through a member of the Sun City residentat a club fair to recruit
new members.I followed up and called the Parkinsonian resident who referred me to the adjunct
professor who was researching the effect of big movements in exercise to diminish the symptoms.
She authorized a scholarship for me to get the special training to be able to teach those techniques and
receive a matching grant for the cost of the group classes and individualsessions.
I made a presentation to the support group in Sun City Vistoso.
An exercise time was set in my home, at this time about 8 people participated, some of whom were
This reduced to 2 men who continued to participate for about 2 years.After the good results and the
improvement they experienced a community roomwas secured and due to my continued pursuit of
education with the lectures to the support groups the group increased to 8 regulars and 4 private
individuals.Another class was added with 8-12 members and private clients in Saddlebrook.I went to
the association support and educational sessions held including Geriatric Grand rounds at the University
of Arizona.One of the Saddlebrook clients moved to Splendido the number 1 adult living community in
the country and he requested that a Parkinson's class be started with me as instructor.There are about
ten in this class.Because the results were so good the Fitness coordinator sends other residents to this
class, so it is mixed.In all classes I use mixed modalities likeself rescue techniques, mobility
techniques, strength training, pilates, martial arts, yoga, dance,meditation and peer sharing.As a
fitness therapist nutrition and medication are also addressed.
Although the generally applied term of the Universe does not apply to Parkinsonians, the world of the
"Parkie" is getting smaller and one of the techniques to reduce the progression is to use amplitude for
both voice and movement.The important thing for them is to not fulfill a negativeprophesy when little
restrictions occur.Shame contributes to cloistering of some,fear of being a burden is another
Politics and External Relations
Due to the energy drain of the "Parkie"it is very hard for them to advocate for themselves.They need
advocacy from their family, providers, political representatives and money to get the changes needed
for insurance coverage, laws for research and other equality issues.
What I have seen developis a great support and bonding among each other.As we have class I
periodically have a sharing of a problem and something good.This helps to open dialogue and solve
problems.There are several nonprofit groups for support, the sad thing is that they are sometimes in
conflict over the funds that are available.An overlap in the information dissemination occurs.Those
that are active in the classes have a much better quality of life, they have expressed concern over the
non admitting people.Many people are embarrassed to admit that they have the disease, which
contributes to isolation.Members of the class will discussthe decline of another member with me and
want to help find a solution.
There is some social organization through the National groups, and I have found the through the classes
the class members are socializing, by visiting one another, playing games together, car pooling to events,
and encouraging one another to try new things.The spouses and caregivers have gotten to know one
anotherand are having activities together both to get more educated and to have fun together.Only a
few have children nearby to be helpful.Some are so happy to be participating in the classes that they
have their children and grandchildren come to see the class. Email and video phone is one of the ways
that the members keep in touch with family.Through the internet some also work for their children.
Going to church and having a spiritual connection is very important to them, and they like to share their
views and experiences during water breaks in the class, and in he parking lot after class.
The life cycle of a "Parkie" used to be very predictable and end for months or yearsbedridden,
sometimes speechless, stiff and in pain.Clinical trials have shown that when a "Parkie" is active with
exercise and active games the progression of the disease is slowed tremendously.Quality of life is very
important;a 10-25% improvement can mean 5-10yrs of recovery.Onset of the disease is a devastating
diagnosis for the person as shared by some in groups.Themajority of diagnosis is for people over 50
years old and a great disappointment as to the quality of retirement they were looking forward to.
The Doctors don't tell the patient much about how to make the best quality of
life except for the drug therapy.These disease symptoms can be painful, very inconvenient, there may
be extreme fluctuations for some with what is called "on" time and "off" time.Tremors can get more
extreme,last longer, involve more of the body or be internal, vocal and visual.Bodily functions are
affected by weakness.Many times the caregiver does not understand the disease effects and treats the
person as if they are lazy.Sometimes this has contributed to divorces, short before or after diagnosis.
By observing both members of the classes and those that only participate in the support meetings, I
have seen the difference in progression by those that exercise.The support and understanding of the
partner or family is very important in the life cycle of the disease and the person.The members that put
a strong and sincere effort into the exercise andeducation, including changing hobbies get tremendous
results in improvement of quality of life.Until this time none of active exercise participants have
become bedridden for longer than a few weeks;even if their hospitalization ended in morbidity.In fact
some have gotten awards for poetry, winning new games they learned andincreased their ability to
ambulate compared to 5 years ago.
The primary source of income for this particular segment of the Parkinson's population; income is not a
problem.This group is retired, get Social Security , Medicare and have retirement and other income.All
in the group own their own homes.Most have household help, many travel and about 15% are
snowbirds. Original sources of income from work before retirement varies from UPS delivery person to
Professors and International Vice President of 3M.
Material Culture and Technology
Over 90% live in individual houses with yards, 2-4 bedrooms and 1500'+ of living areas with beautiful
views of the Catalina Mountains.The homesareair-conditioned, heated, alsohave patios with nice
outdoor furniture, outdoor lighting,waterfalls or swimming pools.In the communities golf courses,
fitness centers, game areas like tennis, bocce', and other games are available.Splendido, one of the
three communities, with classes for Parkinson's disease exercise provides transportation for the
residents.In another, Sun City Vistoso, the city of Oro Valley, provides vans that are scheduled 2 days in
advance for pick up at the persons residence, andat the designated time to return for a rate that
depends on the distance.The other community, Saddlebrook, actually the farthest from Tucson; does
not provide any transportation, the Parkinsonian's are dependent on their caregiver if they are not able
to drive anymore.
Clothing is varied, some have become casual as is the style of Arizona.Others are still more formal in
their dress as was appropriate in their profession.Clothing can become a problem for Parkinsonian' s
especially buttons andshoe laces.Dressing such as easier ways to put on a jacket, looking forsmooth
garments and shoes with Valcrohelps them be able to keep more independence.
Many enjoy yard work or auto mechanics, some of the advanced technical tools such as trimmersand
blowers become dangerous.That is whenmore help has to be hired.Cooking also becomes difficult,
even such simple things as making coffee in an automatic coffee maker.Some people still start new
hobbies such as writing poetry and even sell paintings or jewelry.
Religion and Medicine
Over 75% of the group participate in formal mainstream religion, of this most participate in a form of
Christianity.Less than 1% are Jewish and none are of other faiths to my knowledge.In the classes one
of the modalities used is Yoga to bring the mind body connection together.Over all the members are
very supportive of one another in a holistic and kind way.Even those that had no experience with
meditation were willing to try and have acknowledged benefit from the experience.
Another religious medical conflict exists with cell therapy, here has been very limitedsuccess with fetal
cell transplant since the 1980's, scientists are now looking at stem cells and using standardization to
In the realm of medicine only 1 person used a totally naturopathicapproach, by not using medication
recommended by an MD.and only using metaphysical modalities.In my anecdotal comment I would
say she increased her suffering and decreased relief available from neurologic medication.And she has
Parkinson's is a very stressful disease mentally and emotionally, it contributes to silent inflammations.It
affect each person very differently, and all systems of the body.
Medication is a challenge for the Parkinsonian, first it takes many trials and error to find a good
adjustment.Then it is important to take the medication on time.Even when taken on time there are
times the medicine does not work.Depending on the status of the person, there are times when the
dose is toxicand creates difficult symptoms such as kinesthesia, festination, or freezing.Kinesthesia is
when the head, arms or legs move about without being able to hold still.Festination is when thereisa
speeding up of smaller and smaller s steps that lead to falls, or faster and faster speech that becomes
unintelligible.If the person is able, interrupting that process, by stopping cold and starting again with
correction of body mechanics can be helpful.This is one of the techniques that is taught in the exercise
There is danger from diet-drug interaction like protein and levadopa, and there are drug-drug
MEDICATIONS THAT SHOULD BE AVOIDED
BRAND NAMEMECHANISM OF INTERACTION
(used to treat behavioral
Block Dopamine receptors in the Brain
Worsening PD symptoms
(used to treat Nausea or
Block Dopamine receptors in the Brain
Worsening PD symptoms
(used to decrease
Decrease dopamine stores and activity
worsening PD symptoms
(used to treat depression)
Inhibit Monoamine-oxidaseShould not be taken bypatients receiving levadopa may increase blood pressure, fever, or agitation
Blocks Dopamine receptors in the brain worsening PD symptoms
The Packaging in Haldol® (haloperidol) lists use in patients with Parkinson's Disease as a Contraindication.
Medications that should not be taken with Selegeline HCL (Elderpryl®, Deprenyl®, Zelepar® and Rasagiline (Azilect®)
St John's Wort
(found in cough, cold, allergy
and sinus medicines)
NOTE: Using theseagents with selegeline or rasagelineincreases the risk of one or more of the following:high blood pressure, increased heart rate, respiratory depression, seizure, tremors, fever, confusion, or behavior changes.
Other medications, and Non-prescription medications and supplements should be discussed with your
doctor and/or pharmacist.
(Maria Tan, Pharm D. Candidate and Mary Wagner, Pharm D., MS., Ernesto Mario School of Pharmacy at
Rutgers, The State University of New Jersey June 2007)
There are other instructions about going to the Emergency Room and Hospitalization ofParkinson's
An additional procedure that can help reduce certain tremor is "Deep Brain Stimulation" (DBS).In this
procedureelectrodes are inserted deep into the brain, which getconnectedto an implanted battery
and a microchip.A wirelessdigital adjustment transmitter is used to set the stimulation levels.This
can help the client get years of quality of life back and prolong a good quality of life in the future.It
also reduces the strength of medication necessary and that adds to a prolonged benefit for use of
medication.There are also some negative side effects.The speaking volume is often reduced; the client
then has to get special trainingto increase the strength of the vocal cords and breath.Another
negative side effect can be that it decreases balance control.This is a difficult technique for those
affected to incorporate in their mode of operation.
Fear of falling is quite paralyzing both mentally and physically.
As with any person nutrition and interactions of medications and allergies make a complex
routine for the person with this disease.it is particularly important for Parkinsonians to use the
healthiest lifestyle possible to keep the best and most enjoyable quality of life.Before the person is
finally diagnosed with Parkinson's disease, much change in the body and movement has already taken
place.This population can be very vulnerable and it is important that proven techniques are used, with
them and for them.
Art Expression and Recreation
For most Parkinsonian' s fine motor skills with the fingers become difficult, writing in particular becomes
smaller and smaller.It becomes harder to keep a straight line. For some painting is a new outlet or
using a computer, even with a computer, if that person has tremor they can get a whole row of one
letter.This can be discouraging and frustrating.For those that may have liked needle work that can
leave a big hole in their satisfactory of use of time.On the other hand, depending on the progression it
takes much more time to do activities of daily living (ADL) and leaves less time for pleasurableactivities.
Music and dancing are things that can be adjusted to meet the needs for the Parkinsonian'.By providing
movement areas with chairs or bars to hold on to for balance.
Today the Parkinsonian has much more support and many more options.Medication is basically the
samebase chemical, the difference now is that there are complementary medication the can help
reduce the side effects.There is better education available through the support groups.Many clinical
trials are underway to cure or lessen the burden.Progress has been made financially to assist with
better insurance coverage.Completed clinical trials have shown some specific modalities to rehabilitate
movement and strength.A recent symposium "showed a true shift in the way Parkinson's is viewed by
doctors and patients alike.The community increasingly recognizes that non-motorsymptoms such as
others that drastically affect quality of life for people with Parkinson's and their caregivers and families".
(Parkinson's Disease Foundation 2008)Some of the future cure maybe cell transplantation by taking the
persons own brain cells froma section of brain, changing the type to dopamine producing capability
and re-inserting to increase dopamine production.By using the persons own braincells clinical trials
maybe reduced due to lack of rejection.Gene therapy is in a phase II trial and may be able to reverse
the progressof the disease. A curative phase of Palliative care and treatment can help to be an additional layer of support
for the Parkinsonian and the caregiver or family.Snow birds that do not have the type of exercise
groups in their area, relapse with loss of technique and strength.
Improvement experienced by class participants is confirmed by the increase in social activities, some
schedule them after class because they feel so great. The increase in new things that are tried,the
successes that occur in nearly every class with improvement.
TheArizona chapter of the Parkinson's Association is writing a grant to provide training in the area of
thesnowbirdsby sending me there to train other certified fitness trainers.
The participants in the class have provided empirical data that shows that a comprehensive mind,
body, spirit, exercise, nutrition and education plan improves the quality of life.
References: 1.Argue, John. Parkinson's Disease & The Art of Moving. Oakland: New Harbinger Publications, Inc., 2000. 95-99, 126-131. 2.Farley Ph. D BG, Koshland GF, Prior MM (2004) Learning Big™ decrease bradykinesia in the upper and lower limbs in people with ParkinsonĄ¯s disease. Program No. 874.11. 2004 Abstract Viewer and Itinerary Planner. Washington, DC: Society for Neuroscience, Online. 3.Hatfield, Frederick C. Fitness: The Complete Guide. Rev. 7th ed. Santa Barbara: International Sports and Sciences, 2001. 2.7-2.14,15.1-15.16. 4.Bose MD, Sue. Sleep and ParkinsonĄ¯s Disease Lecture to APDA. 2004. 5.Montesorri, Maria. The Absorbent Mind. Oxford: ABC-CLIO Ltd., 1988. 130-135. 6.Yessis Ph. D., Michael. Kinesiology of Exercise. Columbus: McGraw-Hill, 1992. xi, 3,17,22,49,123,146. 7.Pearl, Bill. Keys to the Inner Universe. Pasadena: Physical Fitness Architects, 1982. 28-30. 8.Prudden, Bonnie. Myotherapy: Bonnie Prudden's Complete Guide to Pain-Free Living. New York: Dial Press, 1984. 75, 82. 9.Arizona Chapter of the American Parkinson'sAssociation Literature and lectures 2003-2008 10.University of Arizona Information and Referral Tucson 2003-2008 11.Geriatric Grand Rounds aging University of Arizona 2004-2008 12.Neurology Grand Rounds University of Arizona 2007-2008 13.Integrative Medicine University of Arizona 2003-2008
Vera Shury is program director of PARKINSONĄ¯STRENGTH™, a program offered by Liberty Science LLC and based upon the philosophy developed by John Argue in conjunction with Stanford Comprehensive Movement Disorder Center and the Department of Neurology the University of Arizona, the department of Anthropology at the University of Arizona and at Kaiser Permanente. Vera can be contacted at email@example.com