Matt LaMartina - St. Louis APDA

					          www.stlapda.org
May 2012: Vol. 26, Issue 2                    Newsletter of the American Parkinson Disease Association, St. Louis Chapter


Mission
Our mission is to enhance the                 Only 11.8%
quality of life for people with               Deborah Guyer, Executive Director, Greater St. Louis APDA Chapter and
Parkinson’s disease, their                    Coordinator of the APDA Information & Referral Center
families, and caregivers in


                                              I
our communities throughout                       always try to put something uplifting on             for additional ideas. Our dollars have enabled
                                                 the front page of newsletters, but in this is-       researchers at Washington University Medical
Missouri and southern Illinois,
                                                 sue, I may have to make an exception. We             School to conduct the first research on incidence
and to provide funding for
                                              purchased a new database system in order to             and prevalence of Parkinson disease in the U.S.
ongoing Parkinson’s disease                   improve our efficiency in handling all the              using Medicare data, discover the benefits of
research.                                     patient services, fundraisers, and donations            Tango dance on PD, and detect a different kind
                                              we receive. And, my computer-savvy assis-               of dementia in Parkinson patients. It has funded
In This Issue                                 tant, Elaine, finally figured out how to write          research being conducted at St. Louis University
Board Briefs .............................2
                                              a query which would reveal how many                            which postulates that an accumulation of
                                              people who receive our newsletter actu-                  100 a toxic product of dopamine, DOPAL, is
Optimal Care in PD ...................3       ally have contributed monetarily to the                  90    toxic to neurons in the brain and leads
LSVT BIG and LOUD .................4          St. Louis APDA. Well, Elaine tells me that               80    to PD. This observation provides an im-
                                                                                                       70
What Is Planned Giving? ............4         of the 7,258 people who regularly receive                60    portant link to the etiology of Parkinson
Optimism…It’s Contagious ........5
                                              our quarterly newsletter (most have re-                  50    disease. If DOPAL is the culprit, we may
                                              quested it for themselves or a family mem-               40    now have a target to which we can take
Preparing for Your Neurology                  ber, or may be a donor making a contribu-
                                                                                                       30
                                                                                                             aim, and perhaps develop a therapeutic
                                                                                                       20
Appointment ............................6     tion within that quarter who also receive                10    agent which can slow Parkinson disease.
Tai Chi Improves Balance in                   one issue), only 857 recipients have actu-               0       This newsletter proposes ways that you,
People with PD .........................7     ally contributed in the past. That is 11.8%                    individually, can join many others in fund-
                                              of you reading this newsletter. Does that                      raising for Parkinson’s disease. Please
Support Group Calendars.......8–9
                                              figure surprise you? It did me!                                read about the Optimism campaign, and
Exercise Classes .....................10         So, what can I do to motivate you to send a          join us in our efforts. You may also choose to
Fox Trial Finder is LIVE! ..........10        gift to the Greater St. Louis APDA? You will            participate in a newly established campaign,
Tributes & Donations .........11–13           want to see the recently released, The Parkinson        Optimism 500, in which you will be recognized
                                              Journey, our new DVD resulting from the Takin’          for contributing $500 or more during a calendar
You Make The Call ..................13
                                              It to the Street campaign and you will recognize        year. Your participation will result in invitations
Traveling with PD ....................14      the need. There is hope for finding causes which        to VIP special events, as well as recognition in
“The Parkinson Journey” .........15           will lead to a cure, but research costs money. We       our quarterly newsletter.
Save These Dates! ..................16        provide so many varied patient services, but they          I look forward to reporting that 11.8% of
                                              aren’t always free to our organization (although       “members” contributing to support our pro-
    NEWSLETTER DISCLAIMER                     in many cases, hospitals and care centers have          grams and services and fund research has in-
“The information and reference ma-            partnered with APDA in an effort to provide             creased significantly by the time you are reading
 terial contained herein concerning           professional staff and space in their facilities for    the next newsletter. I wish I could come up with
 research being done in the field of          exercise and support groups).                           something creative or catchy to get your atten-
 Parkinson’s disease and answers to              Together, we can make a difference. Consider         tion so that this message is even more effective,
 readers’ questions are solely for the        participating in our upcoming fundraiser. For           but my sincere invite will have to suffice for now.
 information of the reader. It should         instance, even if you don’t golf, you can spon-         We have much to do and the clock is ticking.
 not be used for treatment purposes,          sor a hole on the course in our golf tournament.        132,000 new Parkinson cases will be diagnosed
 rather for discussion with the pa-           See the article, “Optimism…It’s Contagious,”            this year. n
 tient’s own physician.”
    APDA INFORMATION & REFERRAL CENTER
      Deborah Dalin Guyer, MA, Coordinator
                                                   Board Briefs

                                                   M
            guyerd@neuro.wustl.edu
       Elaine Dreher, Program Coordinator                    att LaMartina, APDA Board            It is with deep sadness that we mourn
            drehere@neuro.wustl.edu                          President, has passed the baton    the passing of Bernie Frank, long-term
       Campus Box 8111 • 660 S. Euclid                       to Rebecca Daming, who has         APDA Board member (2004-2011) and
              St. Louis, MO 63110
                                                   taken over the role as President of the      active member of PAN. Bernie passed
      314-362-3299 • 314-747-1601 (fax)
                                                   Board effective March 2012. Becca has        away in March and is already missed
                  Office Hours:
       Monday–Friday 7:30 AM–4:00 PM
                                                   served on the Board since 2008. We           by so many people. The Frank family
                 www.stlapda.org                   want to express our gratitude to Matt        has taken comfort in the generous and
                                                   who has served the Board well in
             ST. LOUIS CHAPTER
         SATELLITE RESOURCE CENTER
                                                   this capacity for seven years. Matt
         1415 Elbridge Payne, Suite 168            will remain as Past-President on
            Chesterfield, MO 63017                 the Executive Board and contin-
                 636-537-5455                      ues to be very involved with the
           Call to make appointment.               Dubman Memorial Golf Tourna-
           ST. LOUIS CHAPTER APDA                  ment, which will take place on
             BOARD OF DIRECTORS                    May 21. Matt was responsible for
           Rebecca Daming, President               securing John ‘Mo’ Mozeliak as
       Tom Mackowiak, 1st Vice President           our Honorary Chair for the past
       Bob Goldsticker, 2nd Vice President         several years.
         Don Carlson, 3rd Vice President
                                                      Stan Wilensky, APDA Board
          Rebecca B. Farris, Secretary
          Brian Hantsbarger, Treasurer
                                                   member, has resigned his position
         Matt LaMartina, Past President            due to health reasons. Stan has served       thoughtful expressions of sympathy of-
                                                   on the Board of Directors since 2001         fered by friends and family and in the
               MEMBERS AT LARGE
     John R. Basilico           Brook Dubman
                                                   and was the driving force behind the         knowledge that these memorial contri-
       Bill Billings          Joseph Marchbein     creation of the DBS Support Group,           butions will help us find causes and a
       Patsy Dalton           Robert Sanderson     following his surgery 12 years ago. He       cure for Parkinson’s disease.
     David Dankmyer            Jack Strosnider     has facilitated the group since its incep-     We welcome new APDA Board mem-
                     Lynda Wiens
                                                   tion, and he and his wife, Donna, co-        ber John Basilico, who joins us this
              DIRECTOR EMERITUS                    facilitate (with Steve Balven) the DBS       month and who many of you know
                   Susan B. Levin                  monthly support group. Stan has also         from his article in the February newslet-
              EXECUTIVE DIRECTOR                   served as a strategic member of the golf     ter, “I’m a PD Newbie.” John has many
            Deborah Dalin Guyer, M.A.              committee and both he and Donna re-          skills and talents which we have already
               MEDICAL DIRECTOR                    main dedicated auction gift solicitors.      put to good use! n
              Joel S. Perlmutter, MD

             NATIONAL AFFILIATION
           APDA • 135 Parkinson Ave.
            Staten Island, NY 10305
                 800-223-2732

                        EDITOR                         Remember to get
                                                        your clubs out
                 Deborah D. Guyer

            CONTRIBUTING EDITORS
                    LInda Clark
                   Elaine Dreher
                                                          and join us at the
                   Betty Hayward
                                                      May 21st golf tournament,
                                                            benefiting the
                                                           St. Louis APDA.
                                                     Honorary Chairman: John Mozeliak,
                                                     General Manager, St. Louis Cardinals
          American Parkinson Disease Association
                                                         Dinner-only option available!


2        St. Louis APDA LiNK                                                                                               May 2012
Optimal Care in PD:
Does Physician Specialty Make a Difference?
 By Allison W. Willis, MD, Assistant Professor of Neurology, Movement Disorders Section,
 Washington University School of Medicine


L
       ast year, I had a new patient come   nursing home placement, hip fracture, very sick with heart failure or diabetes
       to see me for a second opinion       and survival.                                and has PD may be too sick to see a
       about her PD management. As is          Only about half of Medicare benefi- neurologist and a cardiologist and his
 typical for a newly diagnosed person,      ciaries with PD see a neurologist; the       or her primary care doctor. Someone
 she brought an entourage of loved ones     rest are cared for by physicians in oth- like this who has other medical condi-
 with a list of questions, which I love. As er specialties. We found that younger        tions that are more severe than their PD
 we were working through their ques- white men who live in urban areas were              would be less likely to need a neurolo-
 tions at the end of the visit, I asked how most likely to see a neurologist for their   gist for PD care, and more likely to die
 far she had traveled for her appoint- PD care. This was not unexpected, as              (from their heart problems). And, it is
 ment with me, as I did not recognize       this is the population that is most of- possible that people with a PD look-
 the town listed on her address informa- ten present in my specialty clinic, and         alike (the much rarer, but more rapidly
 tion sheet. She paused, and then told      is also the population most involved in      progressive diseases that include MSA,
 me that she lived in a rural area five                    clinical trials. However, it  PSP, and CBD) are being diagnosed as
 hours away. What she said next led me                        does suggest that clini- PD by non-neurologists. Finally, some
 to doing the study I am presenting: “Dr.                     cal trials are missing out people with PD may choose to not fol-
 Willis, there are no neurologists in or                     on entire populations       low through with a referral to a neu-
 near our town. With the price of gas                      of PD people for whom         rologist, or get sick before they can go.
 being so high, our church had                                                           Consider this other alternative explana-
 a fundraiser to help us with the                                                        tion: People who follow through with
 gas and hotel money so we could                                                         a neurologist referral may follow other
 come today.” It’s true; there is a                                                      medical advice more as well; they may
 neurologist shortage almost ev-                                                         simply take better care of themselves by
 erywhere in the country, rural                                                          exercising, eating well, and getting re-
 and urban areas alike. Physicians                                                       commended screenings. Within fami-
 with specialty training in Inter-                                                       lies or communities, women may be
 nal Medicine and Family Prac-                                                           more likely to push their spouse with
 tice, therefore, find themselves                                                        PD to see a specialist. Cultural factors
 seeing a lot of neurological problems.     drugs and therapies have failed, which       may influence whether a person feels it
 And although that probably works fine      may in fact work for others (we have         is appropriate to seek a second opinion
 for common neurological complaints         not seen). It may also mean that women       from a specialist.
 or symptoms like headache or dizziness,    and Asian, Hispanic and African-Amer-           While this data is not strong enough
 Parkinson’s disease (as you know) is a     icans with PD may not have access to         to support a policy change yet, it does
 different animal altogether. It is pro- or are not receiving state-of-the-science       open the door for more studies to bet-
 gressive, with many types of symptoms      (gold standard) PD care. We also found       ter understand all of the ways people
 affecting movement, mood, thinking,        that people who received neurologist         with PD can receive the best care pos-
 and autonomic function. Then, there        PD care were 20 percent more likely to       sible, and highlights the comprehensive
 are those pesky motor fluctuations that    be alive at the end of the study period,     approach to PD research at Washington
 occur later in disease- wearing off, dose  less likely to be in a nursing home after    University, much of which is supported
 failures, and dyskinesias. I wondered,     the first year, and less likely to have a    in part by the Greater St. Louis Chapter
“Who is taking care of the nation’s PD      hip fracture in the first year.              of the APDA. Future studies of mine
 population, and does that make a dif-        While it may be suggested that this        will use Medicare data to investigate
 ference in some outcomes?”                 study means all people with PD need          how non-PD diseases affect survival and
   To answer these questions, we studied    a neurologist, and that neurologist care     use of specialty care, identify avoidable
 all (over 130,000) Medicare beneficia- is the reason for these improved results,        medical problems in PD and finally, to
 ries with a new diagnosis of PD in the     I think the data is too preliminary to       develop methods to assess (and if neces-
 year 2002, and determined who the pri- draw that conclusion. There are other            sary), improve how PD care is delivered
 mary PD physician was. We then fol- scenarios that could explain part of our            in areas of neurologist shortage. n
 lowed them for six years, and looked at    results. For example, a person who is

 Volume 26, Issue 2                                                                                 St. Louis APDA LiNK        3
Lee Silverman Voice Treatment (LSVT®)
Big and Loud Therapy
Treatment for Speech and Movement Disorders for Individuals Living With PD
M’Aggie Maranzana, MOTR/L, CLT, MSCS, MBA Lead Therapist, Missouri Baptist Outpatient Rehabilitation



T
      here is now evidence-based treat-     ment feedback. Because of this deficit       do have a positive impact on improv-
      ment that addresses the most com-     in sensory processing, smaller, slower       ing speech and movement impairments
      mon symptoms associated with          movements begin to feel normal. Like-        in people with Parkinson’s. LSVT BIG
Parkinson’s disease. The LSVT BIG           wise, soft speech begins to sound nor-       and LOUD both incorporate the use of
and LOUD therapies are designed to          mal. They are unable to recognize            external cueing and exaggerated move-
address the speech and movement dis-        when their movement amplitude or vo-         ments or vocal volume. The intent is
orders that often follow a Parkinson’s      cal volume is reduced. This often leads      not to teach the individual to shout or
diagnosis. These highly specialized and     to frustration on the part of the family     to constantly take large steps, but to
intensive treatment programs target the     and the individual. The                                     assist the individual with
motor, sensory, and cueing problems         individuals feel that they                                  the recognition that nei-
that have historically made Parkinson’s     truly are speaking at a                                     ther their current state
disease symptoms difficult to treat.        normal volume while                                         nor the exaggerated treat-
   Disorders of the motor system con-       their families are con-                                     ment state is “normal.” It
tribute to rigidity; slow, small move-      stantly asking them to                                      is to recognize that “nor-
ments; and tremors. Decreased muscle        speak louder!                                               mal” lies somewhere in
activation during speech can lead to          Another contributing                                      between.
reduced breath support, reduced vocal       factor is that individuals                                     Both the LSVT BIG
loudness, and reduced clarity of speech.    with Parkinson’s are un-                                    and LOUD programs
Likewise, this motor system deficit com-    able to cue themselves                                      consist of 16, one hour,
promises recruitment of larger muscles      to change their volume                                      individual 1:1 therapy
used for walking and other daily activi-    or the size of their move-                                   sessions over a four week
ties often resulting in small, shuffling    ments/steps. This directly relates to the    period. Each program is tailored to
steps; freezing (poor initiation of move-   sensory processing deficit. If what they     the individual’s interests, needs, and
ment); or inability to stop movements.      are experiencing “feels normal,” that in-    abilities. These programs have been
   Individuals with Parkinson’s often       ternal cue to self-correct will be absent.   designed to help the body relearn and
struggle with faulty processing of move-    Research has shown that external cues        accept volumes and movements that are
                                                                                         actually within normal limits resulting
What Is Planned Giving?                                                                  in improved independence, safety, com-
                                                                                         munication, and participation in every-
David S. Dankmyer, JD, LLM                                                               day activities. n



P
      lanned giving is the integration of   real estate, art pieces, or business in-     table trusts and charitable gift annui-
      your personal, financial, and es-     terests—the possibilities are endless.       ties made during your lifetime. The
      tate-planning goals with lifetime     Planned gifts can provide valuable tax       outright bequest is the simplest type of
charitable giving. Planned giving, by       benefits and/or lifetime income for you      planned gift to make. You can simply
definition, requires forethought. Mak-      and your spouse, or other loved ones.        leave property or part of your estate to
ing a planned charitable gift usually re-     Examples of Planned Giving                 the APDA in your Will or Revocable
quires the assistance of the charity and/     • Bequest                                  Trust. You can also change beneficiary
or a knowledgeable advisor such as an         • Life Estate Reserved                     designation of certain property (such as
attorney, financial advisor, or CPA to        • Charitable Remainder Trust               an IRA) to name the Greater St. Louis
help structure the gift. However, this        • Gift Annuities                           APDA as the beneficiary of all or part of
does not mean it has to be complicated!       • Charitable Lead Trust                    that property.
  Planned gifts come in many sizes,           The most frequently made planned             A Bequest can be specific as to the
shapes, and forms. They can be made         gifts are bequests to charities made         property transferred, amount, or a per-
with cash, but many planned gifts are       through your estate documents. Other         cent of the residual. For example:
made by donating assets such as stocks,     popular planned gifts include chari-
                                                                                                           continued on page 8

4     St. Louis APDA LiNK                                                                                           May 2012
Optimism…It’s Contagious

W
         ith optimism, people come to-       would love to share one of your photos          a high traffic area. Maybe offer a
         gether to raise money, see the      in our newsletter.                              piece of candy in exchange for a
         positive on a difficult day, lift                                                   donation.
someone’s spirits, be encouraged to take     House Party FUNdraisers                       • Early Riser Breakfast: Bring
action, and move closer to a cure. All          Charge an admission or ask for a             or make breakfast for your co-
across the country, people are teaming       donation at the door; for parties with          workers. Ask for a small donation
up to reach a common goal: to “ease the      games, the winnings are donated. Al-            in exchange for starting their day
burden and find a cure” for Parkinson’s      ways remember to have a gift for the            off right.
disease. Participating in the American       winner to keep the competition and ex-        • Matching donation: Many
Parkinson Disease Association’s Opti-        citement level high.                            companies will match your
mism campaign allows you to spread              • Texas Hold-em party                        donation to the APDA.
hope, confidence, and a positive vision         • Wine-tasting party: If you don’t
for the future, while increasing aware-           want to do this yourself, there are    Community FUNdraisers
ness about Parkinson’s disease; raising           companies that will come and             • Bake sale
money for education and support ser-              donate a percentage of their profits     • Craft sale
vices; and helping to find a cure. Op-            from the people who buy their            • Pancake breakfast: Remember
timism events bring people together,              wine.                                      this does not always have to be a
empowering them to take action, and                                                          morning event. Everyone loves
inspiring them to make a positive im-                                                        breakfast for dinner!
pact.                                                                                      • Chili dinner
                                                                                           • Clothing store/Boutique/Hair
Organize an Optimism Event Today…                                                            Salon/Fast Food restaurant: Many
It’s Easy                                                                                    companies will donate a percentage
   Activities designed and run by vol-                                                       of the day’s receipts to a charitable
unteers to raise money on behalf of                                                          organization. Remember to
a specific nonprofit organization are                                                        advertise this event amongst your
growing in popularity today because                                                          family, friends, and colleagues.
they’re personal, flexible, and FUN. Be
as creative as you want with your event:       • Card party/Bunco party                  Kids/Grandkids FUNdraisers
Do you love to hike or bike? Maybe             • Garage sale: Ask your neighbors to        • Lemonade stand
you’re a bowler or a dancer. With your           clean out a closet and donate the         • Gaming party: Ask your friends
individual Optimism event, you choose            items to your sale.                         to participate in a Rock Band,
the activity you want to do. Then invite       • Block BBQ party or competition:             Guitar Hero, Dance Party, or WII
friends or family to join you and start          Ask your neighbors to join you in           tournament. Collect entry fees,
collecting donations today!                      a friendly BBQ competition.                 and secure a prize for the winning
                                               • Pampered Chef, Tupperware,                  team.
Ways to FUNdraise and Spread                     or another company: Many                  • Yard services
Optimism                                         companies will donate a percentage        • Dog walking service
  There are many ways that you can               of the profit from that night’s           • Babysitting
raise money for the APDA – you just              show.                                     • Car wash
need to get a little creative. To get you
started, we’ve compiled a list of indi-      Work FUNdraisers                            Higher Profit FUNdraisers
vidual and group fundraising ideas.           • Dress-down day: In exchange for            • 5K Run/Walk
Let people know that their donations            a donation, everyone can dress             • Dog Walk
are going to support a very good cause!         casually for the day.                      • Trivia night
Hold the event in honor or in memory          • Office pool: Let everyone know             • Bingo
of a loved one or dear friend. Even have        that their entrance fee for the            • Bowl-a-thon
a picture! People will relate to your           pool will be a donation, but offer         • Tractor Pull
cause and will more readily donate.             the winner a prize to keep the             • 50/50 Raffle
Then, when your event is in full swing,         excitement level up.
remember to take pictures because we          • Change jar: Have a change jar in                        continued on next page

 Volume 26, Issue 2                                                                                 St. Louis APDA LiNK         5
Preparing for Your Neurology Appointment:
Helping Your Neurologist to Help YOU!
Diane L. Church, PhD,
Coordinator APDA Parkinson’s Center at Dartmouth-Hitchcock Medical Center, Lebanon, NH

On your mark!                               ; Changes in mental status                        occupational therapist for


A
      n appointment with your neu-            (depression, anxiety, cognition,                help with handwriting, home
      rologist will be most productive        ability to make plans,                          modifications, driver evaluations,
      if you are prepared to share your       hallucinations, compulsive                      computer modifications, and
information and concerns. Here is a           or excessive behaviors such as                  adaptations to make dressing,
checklist to help you get organized.          shopping, gambling, or sex)                     grooming, cooking, and eating
                                            ; List three items that you most                  easier.
Get ready!                                    want to discuss with the neurolo-           ; Ask for a referral to a speech
 ; If this is your first appointment,         gist. (There may not be time to                 language pathologist for help
    ask the neurologist’s office what         address everything during your                  with speech and communication
    types of information you should           appointment, so it is important to              problems (including vocal volume,
    bring. These may include office           prioritize your needs.)                         clarity of speech, and increasing
    notes from other doctors, MRI or                                                          facial expressivity) and swallowing.
    CT images of your brain, and lab       Go!                                            ; Ask for recommendations
    reports.                                ; Arrive early to allow time for                  regarding exercise and nutrition.
 ; Medication list: Document                   parking, using the restroom,               ; Ask about participation in clinical
    all prescription medications               getting to the appropriate                     research trials.
    (including non-Parkinson’s drugs),         reception desk, checking in, and           ; Ask the best way to get in touch
    over–the-counter medications,              filling out paperwork.                         with the neurologist in between
    vitamins, and supplements;              ; Bring along water, a snack, and                 appointments: contact with nurse
    dosages, when medications                  any medications you might need                 or secretary, by phone or email?
    are taken; and when you first              in case your appointment is                 For more information about
    start taking each. Are there any           delayed.                                  Parkinson’s disease, contact the Greater
    medications that you were on in         ; Ask a family member or friend to           St. Louis APDA Information & Refer-
    the past that were discontinued?           accompany you to take notes, and          ral Center at 314-362-3299 or visit our
    Have you experienced any side              remind you of anything important          website at www.stlapda.org. n
    effects?                                   that has not been discussed.
 ; List of Parkinson’s symptoms you                                                      Optimism
    are experiencing: Which are new?       At your neurology appointment:                 continued from previous page
    Which are most troublesome?             ; You did your homework, so
 ; Movement symptoms (walking,                 you are prepared when your                Everyone Wins
    getting out of chair, moving in bed,       neurologist asks about your                  As an Optimism event organizer, you
    etc.)                                      symptoms and medications!                 are touching the lives of many from
 ; Fluctuations in your symptoms            ; Special requests: Ask early                those diagnosed with Parkinson’s dis-
    (typically correlated with                 in the appointment about                  ease to their families and loved ones.
    medication cycle, eating, sleeping,        prescription refills, disability forms,   You are their support system, and we
    and exercise)                              handicapped parking permits,              are yours. You can have a fun and ful-
 ; Dyskinesias (involuntary                    etc. Often a nurse or secretary is        filling experience, donors can support
    movements caused by Parkinson’s            available to work on these during         an organization they believe in, and the
    medications)                               your appointment.                         APDA receives additional money for re-
 ; Non-movement symptoms                    ; Address those three major                  search, education, and support services.
    (swallowing, speech, nausea,               concerns on your list of priorities.         If you need assistance planning your
    constipation, urinary frequency         ; Ask for a referral to a physical           event, please feel free to contact the
    and/or urgency, drooling, excessive        therapist for help with balance,          Greater St. Louis APDA at 314-362-
    sweating, dizziness upon standing,         gait, strength, pain, and flexibility     3299. Remember that any amount of
    swollen ankles, sleep disorders,           issues.                                   money—$20 to $5,000—is important
    restless legs, and more.                ; Ask for a referral to an                   to fight Parkinson’s disease. n

6     St. Louis APDA LiNK                                                                                           May 2012
Tai Chi Improves Balance in People with
Parkinson’s Disease
Tai Chi is a system of slow meditative physical exercises that emphasize gentle movements designed for relaxation, balance, posture, and
health. It combines mental concentration, slow breathing, and dance-like movements.



T
      ai Chi may improve balance and              participant could lean in each of          may improve postural stability by in-
      reduce falls in people with Parkin-         eight directions without falling)          creasing the ability of subjects to sway
      son’s disease (PD), according to re-        and directional control (how               at the ankle or hip to correct imbal-
search published in the February 9 issue          efficiently they could move toward         ances, or by improving their control of
of The New England Journal of Medi-               a target).                                 movement as they approach their limit
cine. In Tai Chi, participants perform          • The Tai Chi group performed                of stability.
postures that flow from one to the next           better than the
in a slow, graceful manner. Fuzhong               stretching group in
Li, Ph.D., and his colleagues at the Or-          activities such as gait,
egon Research Institute in Eugene, OR,            strength, and a timed
questioned whether Tai Chi might also             up-and-go test (how
improve postural stability—the ability            fast a person could
to maintain balance while standing—in             rise from a chair, walk
people with Parkinson’s.                          10 feet, return, and sit
                                                  down).
                                               • Although similar to
                                                  the resistance-training
                                                  group, according to
                                                  many of the measures,
                                                  the Tai Chi group
                                                  performed better
                                                  than the resistance-
                                                  training group in
                                                  two categories: stride
                                                  length and functional
                                                  reach (that is, how far
                                                  a person could reach
                                                  forward beyond arm’s
                                                  length while standing
                                                  at a fixed position).
                                               • Participants in the Tai
                                                  Chi group had fewer
  They randomly assigned 195 people               falls than those in the
with mild-to-moderate Parkinson’s to              stretching group.
one of three groups: Tai Chi, resistance
training, or stretching. Each group at-       What Does It Mean?                                Christopher Goetz, M.D. noted,
tended a 60-minute class twice weekly           This study demonstrates that Tai Chi        “Trainers must be vigilant to the pos-
for 24 weeks. Researchers assessed each       may be more effective than stretching or       tural and balance challenges that people
person’s improvement in tests of postural     resistance-training programs in improv-        with Parkinson’s endure so that the ex-
stability and other characteristics, such     ing postural stability and other activities    ercises and maneuvers that are part of
as gait, strength, and number of falls.       of daily living in people with mild-to-        the program must be carefully individu-
                                              moderate Parkinson’s. These improve-           alized to the patient.” n
Results                                       ments could enhance a person’s ability            This article was originally published in
 • The Tai Chi group outperformed             to perform activities such as reaching         the Spring 2012 edition of the Parkinson’s
   the other groups in two key                for objects in a cabinet, and also could       Disease Foundation (PDF) quarterly news-
   indicators of postural stability:          reduce the chances of falling.                 letter, News & Review. It is reprinted, in
   maximum excursion (how far a                 The researchers suggest that Tai Chi         its entirety, with permission from PDF.

 Volume 26, Issue 2                                                                                      St. Louis APDA LiNK          7
                               Missouri Support Group Calendar
                               Sponsored by the St. Louis American Parkinson Disease Association
                               Our Support Groups meet once a month or as noted. Support Group day and time may change periodically. For
                               current updates on support groups and exercise classes, call the APDA Information & Referral Center or the facili-
                               tator. Information that has changed since the last LiNK appears in bold face.


           City              County                    Meeting Site                Day of Meeting     Time           Leader(s)           Phone
                                               Meramec Bluffs Care Center
         Ballwin             St. Louis                                              4th Tuesday     1:30 PM       Gayle Truesdell     636-923-2364
                                           40 Meramec Trails Dr., Activities Rm.
                                             Cape Girardeau Public Library
     Cape Girardeau       Cape Girardeau          711 N Clark Street                  May 21        6:00 PM    Desma Reno, RN, MSN 573-651-2939
                                                  Oscar Hirsch Room
                                             APDA Satellite Resource Center                                         Mary Buck         636-532-6504
       Chesterfield          St. Louis                                              1st Tuesday     10:30 AM
                                             1415 Elbridge Payne, Suite 168                                        Lynda Wiens        314-540-2662
                                                                                                                                    573-964-6534
                                                Lenoir Community Center                                        Patsy & David Dalton
        Columbia              Boone                                                 1st Thursday    4:00 PM                         573-434-4569
                                                    1 Hourigan Drive                                               Doris Heuer
                                                                                                                                    573-999-2106
                                                  For Caregivers Only
       Creve Coeur           St. Louis               Shaare Emeth                   2nd Monday      11:00 AM   Dee Jay Hubbard, PhD 314-362-3299
                                           11645 Ladue Rd., Library Conf. Rm.
                                                       Young Onset
                                                                                                               Linda Pevnick, MSW,
                                               Living and Working With PD                                                          314-362-3299
       Creve Coeur           St. Louis                                              3rd Tuesday     6:30 PM        LCSW, BCD
                                             Missouri Baptist Medical Center                                                       314-369-2624
                                                                                                                  Rich Hofmann
                                           3015 N. Ballas, Bldg. D, Conf. Rm. 6
                                             Disability Resource Association                                                          636-931-7696
    Festus/Crystal City     Jefferson                                               3rd Tuesday     1:00 PM         Penny Roth
                                                 420 B S. Truman Blvd.                                                                   ext. 129
                                                   Garden Villas North                                           Melissa McGuire      314-355-6100
        Florissant           St. Louis                                              4th Thursday    11:00 AM
                                                    4505 Parker Rd.                                                Nancy Robb         314-869-5296
                                             Capital Regional Medical Center
      Jefferson City           Cole                                                3rd Wednesday    3:00 PM      Jennifer Urich, PT   573-632-5440
                                                 SW Campus, Cafeteria
                                            The Alliance of Southwest Missouri
          Joplin              Jasper                                                 Mondays        2:00 PM      Nancy Dunaway        417-623-5560
                                             2914 East 32nd Street, Suite 102
                                            Kirkwood United Methodist Church                                     Terri Hosto, MSW,
        Kirkwood             St. Louis                                              4th Tuesday     7:15 PM                           314-286-2418
                                                 201 W. Adams, Room 201                                                 LCSW
                                                     The Gatesworth
          Ladue              St. Louis                                             2nd Wednesday    1:00 PM    Maureen Neusel, BSW 314-372-2369
                                                    1 McKnight Place
                                               Lake Ozark Christian Church                                                            573-964-6534
        Lake Ozark           Camden                                                 3rd Thursday     Noon          Patsy Dalton
                                                 1560 Bagnell Dam Blvd.                                                               573-434-4569
                                                    Rolla Apartments                                             Hayley Wassilak
          Rolla              Phelps                                                 4th Thursday    2:30 PM                           573-201-7300
                                                    1101 McCutchen                                                 Tyler Kiersz
                                                                                                                        continued on next page
Planned Giving
continued from previous page                              estate: “I give the Greater St. Louis        given to charity is not subject to Federal
                                                          APDA 50% of the residue of my                estate tax.
 • Specific Asset Bequest: “I give the                    estate.”                                       We will discuss the other types of
   Greater St. Louis APDA my car                        There are many benefits to planned             planned giving in future newsletter ar-
   and Van Gogh painting.”                            giving aside from helping a worthwhile           ticles. We can help you through this
 • Specific Amount: “I give $10,000                   charitable organization. You can retain          process and answer your questions or
   to the Greater St. Louis APDA to                   ownership and use of the property dur-           concerns. Please contact the Greater
   be used for research.”                             ing your lifetime, and your estate gets a        St. Louis APDA for more information
 • Bequest of a Percent of Residual                   charitable tax deduction. The amount             on Planned Giving at 314-362-3299. n

8        St. Louis APDA LiNK                                                                                                          May 2012
Missouri Support Group Calendar
continued from previous page

       City               County                      Meeting Site                 Day of Meeting      Time           Leader(s)           Phone
                                                  Garden Villas South
  South St. Louis        St. Louis                                                2nd Wednesday      10:00 AM      Jack Strosnider     314-846-5919
                                                 13457 Tesson Ferry Rd.
                                               Park Crest Baptist Church
    Springfield           Greene                                                   Last Thursday     11:00 AM         Kay Meyer        417-350-1665
                                                 816 W. Republic Road
                                                Spencer Road Library                                                Sherrie Rieves
    St. Peters          St. Charles                                                 1st Tuesday       1:00 PM                          636-926-3722
                                             427 Spencer Road, Room 259                                             Ann Ritter, RN
                                            Ste. Genevieve County Mem.Hosp.
  Ste. Genevieve       Ste. Genevieve          Education Conference Room          2nd Wednesday      10:00 AM     Jean Griffard, RN    573-543-2162
                                                Hwy. 61 & 32 Intersection
                                                     Pre/Post-DBS                                                   Steve Balven
                                                                                                                                       314-249-8812
     St. Louis           St. Louis          Sunrise on Clayton Senior Living       3rd Thursday       1:00 PM       Stan & Donna
                                                                                                                                       314-997-5114
                                                   7920 Clayton Rd.                                                   Wilensky
   Washington            Franklin                  5551 Weber Road                  2nd Monday        6:30 PM       Carol Weber        314-713-4820
                                                  Bethesda Institute
  Webster Groves         St. Louis                                                  Last Friday      10:30 AM     Laurel Willis, BSW   314-373-7036
                                            8175 Big Bend, Blvd., Suite 210


                    Illinois Support Group Calendar
                    Sponsored by the St. Louis American Parkinson Disease Association
                    Our Support Groups meet once a month or as noted. Support Group day and time may change periodically.
                    For current updates on support groups and exercise classes, call the APDA Information & Referral Center or the facilita-
                    tor, Information that has changed since the last LiNK appears in bold face.
      City              County                     Meeting Site                  Day of Meeting        Time          Leader(s)            Phone
                                              Eunice C. Smith Home
     Alton             Madison                                                    2nd Monday         1:00 PM      Sheryl Paradine      618-463-7334
                                        1251 College - Downstairs Conf. Rm.
                                        Southwestern Illinois College (PSOP)                                                           618-234-4410
   Belleville          St. Clair                                                  2nd Monday         1:30 PM        Jodi Gardner
                                            201 N. Church St., Rm 106                                                                     x7031
                                        Southern IL Healthcare Headquarters
  Carbondale           Jackson                                                   1st Wednesday       1:00 PM     Bill Hamilton, M.D.   618-549-7507
                                                   University Mall
                                             Phoenix Rehab. & Nursing
     Carmi              White                                                     4th Tuesday        1:00 PM     Carolyn Chastain      618-382-4932
                                                615 West Webb St.
                                        Westminster Presbyterian Church
    Decatur             Macon                                                     3rd Thursday       1:30 PM      Kathy Broaddus       217-820-3096
                                            1360 West Main Street
                                           The Senior Community Center                                            Marilynn Kozyak      618-288-3508
  Glen Carbon          Madison                                                  3rd Wednesday        10:30 AM
                                                 157 N. Main St.                                                 Jeanette Kowalski     618-288-9843
                                            Greenville Regional Hospital
                                                                                                                                       618-664-0808
   Greenville            Bond                   200 Healthcare Dr.                2nd Monday         1:00 PM        Alice Wright
                                                                                                                                         ext. 3703
                                            Edu. Dept., Edu. Classroom
                                            First General Baptist Church
    Mattoon             Coles                                                     Last Tuesday       1:30 PM    Roy and Kay Johnson    217-268-4428
                                                    708 S. 9th St.
                                          Heritage Woods - Fox Meadows
  McLeansboro          Hamilton                                                  1st Wednesday       1:00 PM      Paula K. Mason       618-643-3868
                                         605 S. Marshall Ave., Dining Room
   Mt. Vernon          Jefferson         Greentree of Mt. Vernon, 2nd Floor       4th Thursday       6:30 PM    Donna & Bill Peacock 618-242-4492
                                             Fellowship Hall of Salem
    Quincy              Adams              Evangelical Church of Christ           3rd Thursday       12:00 PM     Barb Robertson       217-228-9318
                                                   9th & State
                                            Christ the King Parish Ctr.        3rd Sunday in Jan.,
  Springfield         Sangamon                 1930 Brentwood Dr.                Mar., May, July,    2:00 PM         Pam Miller        217-698-0088
                                        www.parkinsonssupportcentralill.org       Sept., & Nov.

Volume 26, Issue 2                                                                                                   St. Louis APDA LiNK          9
                           Exercise Classes
                           Our Exercise Classes meet once a week or otherwise as noted.
                           Information that has changed since the last LiNK appears in bold face.
                           Attend one class per week at no charge, or, for $20/month, attend as many classes as you want.
         City         County                  Meeting Site                Day of Meeting        Time          Leader(s)           Phone
                                          The Center of Clayton             Wednesday
       Clayton       St. Louis                                                                2:00 PM     Mike Scheller, PTA   314-289-4202
                                       50 Gay Ave., Aerobics Room            & Friday
                                           Tango Dance Class*
                                                                                                           Gammon Earhart,
       Clayton       St. Louis            The Center of Clayton             Wednesday         3:00 PM                          314-286-1425
                                                                                                              PhD, PT
                                             50 Gay Avenue
                                           St. Luke’s Hospital
     Chesterfield    St. Louis                                                Tuesday         11:00 AM     Patty Seeling, PT   314-205-6934
                                          232 S. Woods Mill Rd.
                                        Gardenview Chesterfield                                           Cathy Clough, MHA,   636-537-3333
     Chesterfield    St. Louis                                               Thursday         2:30 PM
                                    1025 Chesterfield Pointe Parkway                                             COTA             ext. 204
                                             Aquatic Exercise
                                                                             Thursday                                          636-896-0999
     Creve Coeur     St. Louis               Rainbow Village                                  2:00 PM      Brenda Neumann
                                                                          April 5– June 14                                        ext. 21
                                            1240 Dautel Lane
                                           Garden Villas North               Tuesday                     Bobby Lautenschleger,
      Florissant     St. Louis                                                                10:00 AM                         314-355-6100
                                            4505 Parker Rd.                 & Thursday                           PTA
                                    The Alliance of Southwest Missouri
        Joplin        Jasper                                                  Monday          2:00 PM      Nancy Dunaway       417-623-5560
                                     2914 East 32nd Street, Suite 102
  South St. Louis                         Garden Villas South
                     St. Louis                                                Monday          11:30 AM    Mike Scheller, PTA   314-289-4202
      County                             13457 Tesson Ferry Rd.
                                    Barnes-Jewish St. Peters Hospital      Every Tuesday
      St. Peters    St. Charles                                                               11:00 AM    Holly Evans, COTA    636-916-9650
                                               Ste. 117                  except 1st Tuesday
                                            Aquatic Exercise
                                                                            Thursday                                           636-896-0999
      St. Peters    St. Charles            St. Charles YMCA                                   2:00 PM      Brenda Neumann
                                                                          April 5– June 7                                         ext. 21
                                         3900 Shady Springs Ln.
                                       Lake Ozark Christian Church
     Lake Ozark      Camden                                                   Monday          4:00 PM     Alice Hammel, RN     573-964-6534
                                         1560 Bagnell Dam Blvd.
* MUST CALL TO ENROLL
                                                                          Registe
Fox Trial Finder is LIVE!                                                today anr
                                                                       be part d
W                                                                    the ans of
          hen you participate in research, and deters funders from                                            future potential matches
          you give something money         investing in Parkinson’s                                           that arise as new trials start
          can’t buy. Fox Trial Finder      research. It is estimated
                                                                             w
                                                                      Parkins er to                           recruiting.
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(https://foxtrialfinder.michaeljfox.org)
opens the door to your opportunity to
                                           that only 1 in 10 people
                                           with Parkinson’s partici-    diseasen’s                             Our goal is to end 2012
                                                                                                           with 10,000 registered volun-
make a priceless contribution in the            pates in clinical trials. Yet in                        teers willing to participate in re-
search for a cure. Parkinson’s patients         spite of the challenges, we know                  search. To get there, we must continue
and their loved ones are eager to play an       that this low participation rate belies          to spread the word about this need – and
active role in finding the cure, and doz-       the Parkinson’s community’s significant          opportunity – for the PD community.
ens of new clinical trials are launched         interest in stepping up to participate.          Join the effort to speed breakthroughs
each year. Yet challenges identifying              Fox Trial Finder makes it easy for pa-        today by visiting Fox Trial Finder and
participants too often mean that these          tients and their loved ones to find per-         creating your profile. The power of Fox
studies finish late — or never really get       sonalized potential trial matches based          Trial Finder grows with every new pro-
started.                                        on specific individual criteria (i.e., lo-       file completed; so share Fox Trial Finder
  Today, 80 percent of trials fail to re-       cation and medical history). You can             with family, friends, and members of
cruit enough volunteers within planned          connect with trial teams to learn more           your community. Thank you for being
timelines. This slows research progress         about participating and stay alerted to          part of the answer. n

10      St. Louis APDA LiNK                                                                                                    May 2012
Tributes & Donations
             Tributes are a wonderful way to acknowledge the memory of a beloved person as well as honor those who mean so much to you.
          Tribute envelopes can be obtained from the Center 314-362-3299 or made directly on the St. Louis APDA website, www.stlapda.org.


 HONORING                     The 90th birthday of            Marion & Sharon               John & Judy                   Sally & Don Friedman
                                Mrs. Harold Sachs              Woodyard                       Hartleroad, Jr.             Leonard & Roslyn Glaser
The birthday of                 Ralph Goldsticker                                           Terri Hilgendorf              Jane Goldberg
  Chuck Adams                                              Lawrence Birke                   Duane & Candaice              Martin & Cookie
  Roselynn Gad                The birthday of                Carol Biermann                   Kinder                         Goldberg
                                Sylvan Sandler               August & Annelie Birke         Kris Reed                     Marilyn & Arnold
Kevin Blinder                   Gertrude Hulbert             Charles Birke                  Robert & Ferne Ridenour          Goldman
  Sid & Frances Axelbaum                                     Jeff & Robin Birke             Rick & Jean Shimunek          Deborah & Phillip Gould
                              Mike Scheller, PTA             The Leo Birke Family
The 90th birthday of           Bill & Jan Erdman                                            Dorothy Talley                Margo Green
                                                             Shirley Birke                  Doris Thompson                Arthur Guller
  Beverly Brick                                              Anthony & Zita Cafazza
  Harvey & Lee Shapiro        The 1st birthdays of Abby                                                                   Debbie Guyer
                                and Lily Schreiber           Lora Sue Cisel               Mary Ann Cheney                 Ronald & Anne Henges
The 90th birthday of            Jack Strosnider              Julie & Drew Dubray           Jacoby Arts Center             Ralph Herzmark
  Jack Chaiklin                                              Judy Dunn                                                    Charlotte & Alfred
                              David Smith                    Dale & Diane Elfrink         Marilyn Conway
  Roberta Hayman                                                                           Mary Lou & Aaron                  Hortmann
                                Jane Smith                   Patricia Forget                                              Terri Hosto
The DBS Team                                                 Roberta Gittemeier               Fulton
                              The recovery of                                                                             Fruma Kane
  Mark & Nancy Kodner                                        The Golfers & Gin            Jack Craig                      Jerry & Joan Kaskowitz
                                Mr. Walter Stern                Group                        Jim & Jeanette Kille
The 90th birthday of            Penny Kodner                                                                              Toby Katz
                                                             Danna Hardt                     Jonathan Krone               Susan Kelter & Matt
  Ruth Dicks                                                 Tracy & Cliff Heitmann
  Phillip & Susan Schreiber   The 87th birthday of                                           Dorothy Wood                    Hanewinkel
                                                             Pete Hietpas                                                 Robert & Susan Levin
                                Jack Strosnider              Jeffrey & Kathy Housman      Mollie Cregar
The retirement of               Debbie & Karl Guyer                                                                       Esther Levine
  Joel Gerstel                                               Harry & Catherine Klein       Debbie & Sid Boyer             Dr. & Mrs. John A.
                                Parkinson’s South County     Cheryl & Phil McKernan
  Debbie Guyer                     Monday Exercise                                        Lillian Dalin                      Lewington
                                                             John & Karen Meara                                           Lewis, Rice, & Fingersh
                                   Group                     Nurses & Company, Inc.          Barbara & David Furman
The 65th birthday of                                                                                                      Joan Loewenstein &
                                                             Dennis Pohlmann                 Karl & Debbie Guyer
  Mark Goldstein              Jack Strosnider                                                                                Norman Goldman
  Barbara & Mark Rosen           Nelda Carlisle-Gray         Don & Lucille Pohlmann       LaVerne Delano                  Robert Loewenstein
  Grace & Harold Sarner          Roland & Barb Lindhorst     Kenneth Pohlmann               Jessica Duran                 Laura Lueken
                                                             Rowdy Reds                                                   Gary & Shirley Madden
Sharon Kuhr                   Daniel and Carola Von Berg     Harvey Rogge                 Helen Dickmeyer
  Larry & Andi Goldsticker                                                                                                Joe Marchbein
                                John & Ramona Von            Laurentine Schmidt             Linda Delk                    Art & Joyce Margulis
                                  Berg                       Mr. & Mrs. Tim Shook                                         Justus & Barbara
The 70th birthday of                                                                      Jerry Diebner
  George Marble                                              Tuesday Morning                                                 Matthews
                              The speedy recovery of            Exercise Group               Stan & Angie Klearman
  Nancy, Tami,                  Stan Wilensky                                                                             Kimball & Lisa McMullin
    the O’Tooles, &                                          Casimir Vrasic               Albeno Dori                     Missouri Cure’s Staff
                                Debbie & Karl Guyer          Gene & Geri Wilmes
    the Walters                                                                             Jovita Ann Johns              Barbara & Mike
  Robert & Karen Olsen                                       Linda & Terry Wilson           Pearl Mueth                      Newmark
  Karen Suroff                                             Marvin Blum                      Sandy Steppig                 Mr. & Mrs. Aaron
                               REMEMBERING                  Randee Fendelman                                                 Osherow
The 50th Anniversary of                                                                   Dick Fagin                      Jeffrey & Judy Pass
                              Arnold Amann                  Bill & Terri Taylor             Jerry & Linda Kraus
  Mr. and Mrs. Sandford                                                                                                   Amy & Larry Perlmutter
  Miller                        I.A.T.S.E. Local 6                                          Judy & Jerry Zafft
                                William & Gloria           Elva Bottchen                                                  Art & Fran Poger
  Mrs. Rita Rennard                                          Penny Kodner                 Damiano Falcone                 Steven Poindexter
                                   Zimmers
                                                                                            Joseph & Alison Falcone       Rochelle Popkin
The speedy recovery of                                     Shirley Bren                                                   John Pruellage
                              Jim Arnold
  Annalee Nissenholtz            Cindy & Chuck Springli      Janet Forsman                Bernard Frank                   Jake & Leslie Reby
  Larry & Gail Hartstein         Bette Thies                                                Charles C. Allen, Jr.         John & Maureen Riffle
                                                           Robert Bubla
Bill Peacock                                                 Ruth Bubla                     Craig & Jody Altman           Albert Rose
                              Jessie L. Bazzarone                                           Paul Arenberg                 Ruth Rosen
  Mt. Vernon Business            Bill & Gwen Berutti
      Women’s Club                                         Francis Charles Carpenter        Art & Science Group           Andrew & Ivette
                                 Dora Berutti                George & Theresa Biber         Richard Aselage                  Rothschild
The research of                  Brenda Brown                Beth Connelly & Family         Bernadine & Paul              Phyllis & Marvin
  Dr. Joel Perlmutter            Jim & Mary Lee Brown        Liz & Gene Kuhn                   Birenbaum                     Sandweiss
  Southern Illinois              Mr. & Mrs. Ross J.          Thomas & Mary Kuhn             Suzie & Alan Broddon          Joyce & Richard Sass
     Parkinson Support              Cascio                   JoAnn Maloy                    Edie & Harvey Brown           Jackie Schiffer
     Group                       Mr. & Mrs. Victor G.        Betty Mansille                 Harvey & Karen Carafiol       Leanne & Harvey
                                    Cascio                   Paul Matsuoka                  Robert Carafiol                  Schneider
With gratitude for               Bill, Andrea, & Pete        Thomas McLaury                 Arita & Ed Cleary             Mr. & Mrs. James E.
 Dr. Perlmutter’s                   Duncan                   Christine Miller               Sandy Coblitz                    Schneithorst
 wonderful PEP                   Robert & Denise Graham      Lorraine O’Brien               Sheila Cohen                  Suzy Seldin
 presentation in April           Ken & Jackie Klaus          Joseph & Rosalie Pisciotta     Stanley & Anita Cohen         Babs Shapiro
 Debbie Guyer                    Jack & Stephanie            Raymond & Luella Rew           Mr. & Mrs. Charles Cook       Marcia & Bob Shapiro
                                    Kochinski                Beverly Skolaut                Christine Cool                Gretchen Smith
The recovery of                  Julia Kravanya                                             Steve & Marilyn Dardick       Ruth Sobel
  Mr. Leslie Rich                Mary & David              Agnes Arlene Cates               Ed & Diane Deutch             Jean Srenco
  Penny Kodner                      Kurtenbach               George, Alice, Mike, &         Jack & Ellen Deutsch          Evelyn Tischler
                                 Marsha Mussatto &             Heather Adams                Ralph & Eilah Jane            Richard B. Walsh, Jr.
Martin A. Rudloff                                            Marjorie & Herschel
 Tina A. Rudloff                    Vi Edwards                                                 Edwards                    Washington University
                                 Karen & Tom Tallman           Beane                        Sandra Esrock                    CRNA’s
 St. Louis Esprit Softball                                   Adron & Carolyn Cook
                                 Terry & Toni Wargo                                         William & Laurie Falk
                                 Jim & Michele Wilson        Carol Elliott                  Bob & Lois Friedman         continued on next page
 Volume 26, Issue 2                                                                                                 St. Louis APDA LiNK      11
Tributes &                      Norman & Vicki Litz
                                Les Loewe & Jean
                                                           Joan Dallas
                                                           Carl & Ruth Davidson
                                                                                      Robert & Debra Trost
                                                                                      Jason & Sara Wiegman
                                                                                                                 Melba Poole
                                                                                                                  Grace Barbee
Donations                          Agatstein
                                Joe Marchbein
                                                           Rick & Wanda Dillow
                                                           Elaine Dunn
                                                                                      Jerry & Sabra Wood
                                                                                    Joan Longo
                                                                                                                  Kevin & Sarah Hancock
                                                                                                                  Timonthy & Sheryn Just
                                Al & Joy Melman            Dycus, Bradley &                                       Debra McCallister
 continued from                 Jean Metzger                  Draves, P.C.             John & Beth Morris         Lois McLain & Rita
 previous page                  Tim & Nancy Persons        Mike & Becky Estel          Elisa & Andrew Robinson       Potter
                                Jeanne Rimmel              Michael & Debbie         Nick Ludwig
                                Dee Rosenthal                 Fitzgerald                                         Donald Rasche
  Wedgewood Partners, Inc.                                                            Diane Ludwig                 Kay & Dave Wasmuth
                                Karen Schechter            Robert Fowler
  Robert & Lynda Wiens          Eleanor Schlafly           Kenneth & Irma Frick     Jacob Manuele
  Stan & Donna Wilensky                                                                                          Merle Rockwell
                                Ben Schulein               The Goddard Family          Anthony & Rhonda           Sally Boughman
  Jerrold & Deborah Willis      Ann Schweig                Skip & Gail Hill               Aiello
  Judy & Jerry Zafft                                                                                              Mr. & Mrs. Allen Burns
                                Bert & Elizabeth           Barry & Teresa Holcomb      Joseph Aiello              Kenneth & Dianne Ehle
  Stan, Sally, & Marci             Schweizer, II           Jim, Wanda & Kim Honey      Katherine Aiello
     Zimmerman                                                                                                    Joseph & Theresa Gordon
                                Harry & Reva Shank         Margaret Jordan             Jerry Amaro                Ron & Flora Hogue
Bruce Frushour                  Harvey & Lee Shapiro       Alice Kerns & Family        Anthony & Zita Cafazza     Knights of Columbus,
  Terri Hosto                   Sher & Shabsin, P.C.       Richard & Nancy             Vinie & Diane Castelon        Christ Prince of Peace
  George & Nancy Marble         Denise & Rey Silver           Kirschner                Shirley & Bernard Corno       Council 12986
  Joe & Donna Marshall          Donald & Ruth Solomon      Dan Lewis                   Elaine Edwards             Robert & Lucila
                                Jeff & Barb Smith &        Brock & Gala Lockwood       Kathleen Edwards              McMillion
Janet Geno                         Family                  Tal & Fay Lockwood          The Huffmon Family         Catherine Rockwell
  Rolla Geno                    The Craig Stern Family     Cliff & Mary McMahan        Robert & Karen Lewis       Mr. & Mrs. J.
                                Bert & Margie Talcoff      Sharon Mullins              Michael Lodes                 Stubblefield
Theresa Gibbar                  Dolores Toder              John Roseberry              Anthony Manuele &
  Ralph & Kathryn Bruns                                                                                           Bob & Joan Weissert
                                Mr. & Mrs. Simon Toder     Richard & Mary Ann             Katharine Starkey
  Marcelline Dairaghi              & Family                   Stout                    Anthony & Magdalene       Joseph Rothberg
  Andrew & Stacey               Jerry Ude                  SWCA Environmental             Manuele                   Joanie & Mark Goldstein
    Lammers                     Randy & Ruth Wall             Consultants              Joe Manuele & Nancy
  Guy & Kathleen                Robert & Lynda Wiens       Marie & Robert Taylor          Henrichs               Ed Scallet
    McDonald                    Stan & Donna Wilensky      John & Liselotte Wells      Margaret Manuele            Lee & Harvey Shapiro
  Harley & Liz Reynolds         Richard Wolfheim           Bob & Jean Wise             Roy & Marlene May
  Katherine Sapp                                                                                                 Vernon Schmidt
                                Richard Yalem                                          Mike & Marty Meier          Grace Sullivan
  Robert & Patricia                                      Elmer Kleeschulte             Steven & Lynn Moro
    Schwendemann              Colleen Goodridge            Patricia & Brian Bax        William & Christine       Jimmy Shaner
  Doris White                   Bank of Old Monroe         Joan Busby                     Peterson                  Bud & Phyllis Ross
                                                           Roland & Arleen Fisher      Steve & Sue Shumate
Kay Glassman                  Dr. Fred B. Goodwin          Pat Griesenauer Lewis                                 Ronald Simon
  David & Mary Ann              Charles E. & Mary E.                                   Fran Smith
                                                           Barb & Art Pondel           Eugene & Catherine          David & Lora Biernbaum
    Gelfand                        Sharp                   Rosie Prinster                                          Randee Fendelman
                                                                                          Terbrock
Frances Glazer                Hazel Bernice Gourley        Jeanette Vogt               Dennis & Janice             Larry & Gail Hartstein
  Ann Fingerhood & Family       Grace Sullivan                                            Thousand                 J.H. Berra Construction
                                                         Robert Klefisch                                           Phil & Ilene Kaiser
  Dr. & Mrs. Harry                                         Richard Klefisch            Rose Marie Vaccaro
    Glassman                  Thomas Grissom                                                                       Kiefer Bonfanit & Co.
  Manuel & Edna Glazer          Deborah & Kurt           Ray Knierim                Eugene McDowell                Richard & Ruth Just
  Don, Elaine, & Mandy            Hollman                  Jack Strosnider            Larry & Lola Laurent         Erica & Mitch Lefkowitz
    Moore                                                                             Stephen & Sarah Johnson      Mary & Art Lottes
                              Harold F. Grotefendt       Albert Kopolow               David & Christine Sadler     Mainini Tile Co.
  Mildred Poletsky              Carl Conrad
  James Sevem                                              Alan & Peggy Schaffer      Jean & Jerry Sadler          Gene & Lisa Mainini
                                Dorothy Conrad                                        Charles & Sandra Smith       Joe Marchbein
Helen Goldsticker               Marg Hess                Lester Kroeger                                            McKelvey Homes &
  Morton & Norma Baron          Jim & Ruth Ann Wheeler     Thomas & Madonna         Ora Fay McGinnis                  James G. Brennan
  Alex & Cynthia Berger III                                   Marnati                 Loretta Pittaluga            Meadowbrook Country
                              Edward L. Hake               Florence Peck
  Toni Breihan                  Julia & Charles Hake                                Gina McGoldrick                   Club
  The Cohen Family                                         James Peck Family                                       Bobbi Nathan
                                                                                      Lauren Krimsky
  Margie Cornbleet            Steve Heady                Edgar Henry Kummer                                        Ava & Steve Schwedt
  Madeleine Elkins &             Ruth Zerface              Wallyball/Bunco Gals     William Meyer                  Emily & Todd Schwedt
     Harvey Wallace                                                                  Terri Seger                   The Sterling Company
  Fred & Marilyn Firestone    Otto Hoelscher             James LaPorta, Jr.          Sharron Montoya               Bill & Terri Taylor
  Ann Fisher                    Albert & Bernice           Fred & Frankie Appleby    Julia Davis
  Semon Frelich                    Brockmeyer              Jeannie Boettcher                                     Billy Smith
  Rick & Lisa Gans              Jim Brockmeyer             Larry & Linda Boleach    Christian Nordstrom            Debbie Guyer
  Bob & Jeanne Golden                                      Brown Shoe Company         Heather Wood                 House & Associates LLC
                              Dixie L. Holland                                                                     W. Wiley McFarland
  Larry & Andi Goldsticker      William & Sue Christie     Ruth & Gunnar Brown      Ira S. Oglesby Sr.
  Debbie & Karl Guyer                                      Helen Douglas-Taylor                                    Robert E. Miles
                                                                                       Allan & Alice Mollett       Phil & Sandy Panagos
  Ralph Herzmark              Philip Johler                Gary & Jean Eversmeyer
  Dr. John Holtzman             Ken & Susan Epstein        Mark Forbes              Jake Pantukhoff                Linda S. Rieves
  Bruce & Mary Horwitz                                     Rebecca Geraty             Donald & Barbara Correll     Carl & Thelma Stone
  Julie & Warren Hutton       David Kennedy                Hazelwood West Math                                     Bette Thies
  Dr. Arnold Jacobson           Bill & Carol Allen            Dept.                 Mary Paz
                                Carole Anne Baker                                    Allen & Arline Kolons       Enid Spilman’s mother
  Joni & Bob Kaiser                                        David & Libby Hosler                                    Margie Smith
  Ruth Kessler                  Norman & Barbara Bauer     John & Mary Ellen
                                Susan Belcher                                       Susan Piazza
  Michael & Ivy Klein                                         Keaveny                 Deanna Siller Duda         Ann Spolter
  Eliot Kleinberg               Paul & Jane Bohannon       Kyle & Alisha Kudron                                    Larry & Andi Goldsticker
                                Phil Boston                                           Carmen M. Marty
  Robert S. Klostermeier                                   Dr. & Mrs. Guido A.        Carolyn Q. Parker
  June Laba                     Terry & Nancy Brown           LaPorta & Family                                   Edwin Louis Stamm II
                                Treg & Karla Brown                                    Laura B. Wilhelm             Barbara Atteln
  Linda Laramie & Philip                                   Douglas & Shannon
     Scharf                     Kay Bruchhauser               Owenby                Herb Pitts                     Ruth Ann Hager
  Barbara Levin & Steve         Ben Burnley                Dominc & Sharon            Jerry & Kathryn Stroder      Mike Hinkle
     Muchnick                   Jim & Mary Cromeenes          Thompson & Family       James & Debra Twellman
                                                                                                                 continued on next page
12     St. Louis APDA LiNK                                                                                                    May 2012
Tributes & Donations
                                GENERAL                         You Make The Call
continued from previous page    Nancy & William Anderson        Dave Myers


                                                                I
                                Dennis & Kay Anstine               n the months since being diagnosed with Parkinson’s dis-
  Arline Kretschman             Thomas & Charlotte Benton
  Beverly Favazza               Bill & Ada Billings                ease, I’ve bumped into many old friends who are quick to
  Karen & Bob Goode             Janina Buenrostro                  apologize because they didn’t call me after hearing about my
  Michael & Gloria McBride      Orville & Virginia Burkemper
  Lee Metcalf                   Robert R. Butenschoen           new challenge. “I should have called…but I didn’t know what
  Ilene Murray                  Patricia Carter                 to say” is an all too common refrain. The phrase, “I didn’t
  Audrey Naumann                Mary Cayse
  Anita Selley                  Dick & Nancy Chin               know what to say,” should be eliminated from everyone’s vo-
                                Roy Kenneth Conner              cabulary. You’ve known me for 5, 10, 15, 20 years; you’re a
Richard Stang                   Terry Conner
  Barbara Finan                 Bill Cottrell                   smart person; you have a myriad of communication options;
  Sheila & David Shortt         Bob & Linda Coulter             you must sense that I am, if not suffering physically, certainly
                                Francis & Bamby Craig
John Steinmetz                  Barbara Crow                    experiencing some emotional pain, and you don’t know what to
  Joe & Margaret Adams          Jim & Doris DeLaet              say? You need new vocal cords and some guts.
  Betty Benson                  Lucy Ellen Donaldson
  Brian & Susan Caimi           Diane & Don Donlon                 A bit harsh, I admit, but think how selfish those words
  Mary Factor                   Larry Dreppard                  sound. It might make you uncomfortable to make that call,
  Warren & Joyce Feeler         Charlotte Eldredge
  Vicki & Taff Harris           Janet Rice Forsman              so your potential discomfort overrides the comfort you might
  Chuck & Ruth Huntbach         James & Paula Frick             provide someone who is facing perhaps the biggest challenge
  Michael & Pamela Kelley       Dorothy Gacioch
  Jim & Marilyn Lawless         Jackie Garver
                                                                in his/her life? In your world, avoiding a little awkwardness
  Kelly LeStarge                Don & Carol Giger               takes precedence over showing you care?
  Rene Lusser                   Ranjita Gosain
  Robert & Bonnie Mathews                                          So, the next time you think, “I should call, but I don’t know
                                Clayton Goss
  Marty Roberts                 Harry Grannemann                what to say,” get a mirror and have a talk with the person star-
  Dennis & Colleen Woerheide    Hord Hardin, II                 ing back at you. And think about your first thought. When you
Charles Stephens                Irene Hart
  Elaine Hall                   Bernhard & Else Hartmann        get to “I should have called, but...” stop. Your initial instinct
  Jose & Harriett Orozco        Dan & Regina Hendrickson        is right on. Of course, you should call! And know this: If you
  Marge & Jerry Right           Ray & Muriel Hoffstetter
  Solid Fifty Club              Don Hoit                        call and babble, stammer, and generally butcher everything
  South County Business Group   William & Margaret Jamison      your English teachers ever taught you, I’ll only remember that
  Richard & Stacy Stephens      Ryan & Carol Jones
                                Raymond & Ruth Keating          you called. If you call and say something totally stupid, I will
Lorraine B. Suntinger           Kay Keilholtz                   remember that you called. If you call and find it hard to go on,
  James & Susan Fritz           Karen Keth
                                David & Marilyn Klasing         I’ll only remember that you called. At a time when I am just
Margaret Tretter                Ladue Chapel Women’s            plain scared of my own mortality and feeling things I’ve never
 Vicki & Gary Anderson             Association
 Del Gross                      David Michael Lansdown          felt before, I don’t care what you say or how you say it.
 Brenda Halastanis              Linda Laramie & Philip Scharf      By saying nothing, you’re saying a lot. The silence is deaf-
 Al & Jan Keller                Jerome & Elizabeth Lester
                                Ann Lux
                                                                ening…and revealing. Not knowing what to say or saying it
Dr. Herman Turner
  Jeff Sandler                  Christel Maassen                using something less than the King’s English is pardonable.
                                Dr. & Mrs. Brad Marrs           Not caring enough to place the call is selfish, gutless, and in-
Lorena A. Walker                Richard & Sharon Marsh
  Dewayne Hamner                Charles & Sandra Martin         excusable. My response to “I should have called, but I didn’t
  Wendy & Randy Smith           Helen Martin estate             know what to say” goes like this: “You didn’t call and I know
                                Char Ann Meloney
Sam Weber                       Janet Meyer                     exactly what to say.” Make that call! In the wise words of the
  Harlan & Barbara Floom        James & Pamela Miller
  Roberta Hayman                                                Wizard of Oz …have a heart, use your brain, and muster up
                                Floyd & Diana Morgan
Dr. Allison Willis’s Father     John & Beverly Paquet           some courage.
  Debbie Guyer                  Jim & Jean Peterson                As I write, I temper the emotion I feel for this topic. I rec-
                                Karen Pfitzinger & John Kehoe
Elizabeth Wright                Margie Reimer                   ognize that not everyone has the ability to say exactly the right
   Bethesda Health Group        Nora Sanders                    thing at exactly the right time…especially to a friend in a
   Robert & Carolyn Harmon      Donna & Donald Sartor
   Helen Meyer                  Rozanne Schaefer & Lawan        tough spot. Conversely, a friend in a tough spot is a friend first
   Jeanne & Jim Nowicke            Horsley                      and foremost, not a grammarian. He/she values your friend-
   Melissa Shepard              Scottrade Employees
   Joseph & Susan Sivewright    Martin Shrader                  ship, not your use of syntax. In my career and in my life, I
   Joyce & Richard Snyder       Charles Siebert                 use an adage that seems to work remarkably well in a variety
   Marilyn & Hardy Sumner       Beatrice & Marvin Siegfried
   G. David Voges               Larry & Jacqueline Simon
                                                                of situations. When all else fails, tell the truth. Role play with
   Mark & Mary Ellen Voss       David & Cindy Smalley           me— YOU: “Hey, I don’t know what to say.” ME: “You don’t
                                Keith Smith                     have to say anything. The fact that you called speaks volumes.”
                                Milton & Carol Stohs
                                Jack Strosnider                    There, was that so hard? n
                                William & Marilyn Strothman        Reprinted with permission from the author and Parkinson
                                Sara Jane Weinhaus
                                Jean & Bob Wunderlich           News, Volume 32, Issue 2, February 2012.

 Volume 26, Issue 2                                                                                St. Louis APDA LiNK        13
Traveling With Parkinson’s Disease `~`~`~`~`~`~`
By Alison Monette, RN, BSN, Deep Brain Stimulator Program Coordinator, Central DuPage Hospital



S
      omeone once said, “Never travel-       ing to go with you, consider your travel      legs and prevent you from having to
      ing is like reading the same chap-     companion carefully. Decide if whoever        climb over another passenger to get to
      ter of a book over and over again.”    goes with you needs to be aware of your       the bathroom. Ideally, a person with
Receiving a diagnosis of Parkinson’s dis-    diagnosis, needs, and limitations. If you     Parkinson’s should not sit inactive for
ease does not mean the end of traveling,     are more advanced and need a greater          more than 20 to 30 minutes at a time,
whether to new places around the world       level of care, think about if it would        so move your legs and stretch regularly,
or back to the places you know and love.     make sense for a caregiver to accom-          get up, and walk when you can.
                                             pany you on your trip.
Research Your Trip                             While your goal should be to engage         Medication Management
   The most critical task when planning      in the things you enjoy, plan activities         It is crucial to make sure you have
to get away is researching your destina-     that match your physical ability. Safety      enough medication with you to last for
tion. Gone are the days of spontaneous       should always be at the forefront of your     your entire time away from home, and
travel. You need to know where you are       mind when planning how you are go-            it may be beneficial to bring extra medi-
going, who you are going with, and           ing to spend your free time. For certain      cation with you. Plan ahead and request
what kind of resources will be available     outdoor pursuits, consider discreetly in-     refills to be authorized by your physi-
to you once you get there. This is im-       forming a guide or activity leader of any     cian if you do not have enough medica-
portant, even if you are traveling back      concessions you may need.                     tion on hand. Medication is your life-
to a familiar place. It is important to                                                    line when you have Parkinson’s disease,
look at places you have been with a new      Navigating the Airport                        so do your best to avoid having to stop
set of eyes, taking into consideration         Allow yourself plenty of time to navi-      anything abruptly. Pack your medica-
your diagnosis and the restrictions as-      gate your way through the airport. Air-       tions in their original bottles with up-
sociated with it. The more you research,     ports tend to be crowded, fast paced, and     to-date directions to avoid any confu-
the more prepared you will be. Do not        stressful…three characteristics that may      sion. If you use a pill box, bring it with
assume you will find your way around         make Parkinson’s symptoms increase.           you and separate medications into the
once you reach your destination.             For example, gait freezing tends to get       pill boxes once you are settled. Don’t
   Consider all of your options carefully,   worse if you are rushing or in the midst      forget to pack other accessories as well,
especially lodging. Look for places that     of a crowd of people. Consider smaller        such as a pill cutter or alarm if these are
have an elevator or ask for rooms on the     airports if they are an option, and try to    the things you are familiar with using at
ground floor if navigating stairs are dif-   take non-stop flights so you do not have      home. Outside of having the pill bot-
ficult for you. Ask if handicap accessible   to make your way through multiple air-        tles, keep a current list of medications
rooms are available since they tend to       ports. Ask for assistive devices (wheel-      on your person at all times in case of
be closer to the entrance, roomier, and      chair, cart) if you have to cover long        emergency.
fitted with assistive devices to make mo-    distances between the parking lot and            Many Parkinson’s medications are
bility easier. Take advantage of what is     your gate. Use rolling luggage, and take      taken several times daily and work best
available. For example, when choosing        advantage of curbside check-in if it is an    when a strict schedule is followed. Dis-
between resorts on a Caribbean island,       option. Make sure you wear appropri-          cuss with your neurologist how to ad-
look for the facility that provides golf     ate clothing and shoes, keeping in mind       just your timing of doses if you will be
carts to drive between your room and         you may have to empty pockets and             traveling across time zones on your va-
the beach or restaurants if walking long     remove shoes to get through security.         cation. The rule of thumb is this: Main-
distances is difficult for you.              With Parkinson’s, rushing may actually        tain the same number of hours between
   Once you have decided where you           make you slower, so try to stay calm and      doses throughout the day based on the
are going to stay, educate yourself about    focused. Ask if your neurologist would        time zone you are in when you wake
the location of the nearest hospital and     be willing to write you a letter stating      up in the morning. For example, if you
pharmacy. If you are traveling outside       your diagnosis to carry with you. That        take your medications every three hours
of the country, make sure you know           letter may inspire the staff at the airport   and you wake up in Illinois but travel to
the limitations of the local healthcare      to be more patient and allow you extra        California, continue taking your medi-
system and what your health insurance        time to complete tasks.                       cation every three hours from your first
plan will and will not cover. You may          Aisle seats on airplanes are prefer-        dose in the morning until you fall asleep
also consider adjunct health insurance.      able to window or middle seats because        in California. When you wake up the
   When it is time to decide who is go-      they allow more space to stretch your                          continued on next page

14    St. Louis APDA LiNK                                                                                               May 2012
Traveling with PD                               Considerations for the DBS Patient           increase with changes in location and/
                                                  Always carry your Medtronic card           or routine. Traveling is not contraindi-
 continued from previous page
                                                with information about your device(s).       cated, but you should have a plan of ac-
next morning, you adjust to California          Have it accessible when you are at the       tion in place for mental status changes.
time. The time interval between doses is        airport, and provide it to the staff at      Some ideas include bringing familiar
more important than the actual time of          the security check point. You should be      items with you, bringing along some-
day. Keep in mind that this may mean            pulled aside and patted down instead         one you know well to help reorient you,
you will need to add a dose at the end of       of going through the metal detector.         and asking your physician to prescribe
the day of traveling if it is a longer day      Make sure to pack your Access Review         medication that you can take on an as
than usual (make sure your neurologist          (patient remote) so you have the ability     needed basis for disorientation.
is aware of additional doses).                  to check you stimulators and turn them          There is a class of Parkinson’s medi-
                                                on or off. DBS is performed in major         cations called Dopamine Agonists that
Rest                                            cities world-wide, and you can always        have the potential to cause compulsive
   Since you want to enjoy your travels         find the nearest provider by contacting      side effects. Examples of dopamine ago-
to the fullest, don’t overdo it! Give your-     the manufacturer, Medtronic. If you          nists are Mirapex, Requip, and Neupro.
self time to acclimate to new surround-         have to be hospitalized while away from      Very few people who take these medica-
ings, and schedule time for rest every          home, make sure to communicate to            tions experience compulsive thoughts or
day. If you know there are times dur-           hospital staff that you cannot have an       behaviors, but if you do, you should be
ing the day when you function better            MRI.                                         sure to discuss this with your neurolo-
and have more symptom control, plan                                                          gist. Never plan trips with the intention
activities around your “on” time. Keep          When Travel Is Not A Good Idea               of satisfying compulsive urges.
hydrated and remember to drink more               20-40% of people with Parkinson’s             So, with the right preparation and
if you are in the sun or more physi-            have varying cognitive deficits, which       planning, you can lead an active, healthy
cally active than usual. Eat frequently.        may include forgetfulness and confu-         life filled with travel and adventure, de-
Remember: Any stressor like hunger,             sion. Some may also have hallucina-          spite your diagnosis of Parkinson’s dis-


                                                                                              `~`~`~`~`~`~`
dehydration, or fatigue will make your          tions, often as a side effect of their       ease. Bon Voyage! n
Parkinson’s symptoms worse.                     medications. It is important to know
                                                that cognition and hallucinations may



                                               A
                                                        fter years of planning, grant writing, and raising funds, and months of writ-
                                                        ing scripts, filming interviews with physicians, patients, and caregivers, we
                                                        are ready to release The Parkinson Journey. This DVD features Fox Sports
                                               Broadcaster Joe Buck, whose father Jack developed Parkinson’s in the final years
                                                of his life. In addition, it includes leading Movement Disorders specialists from
                                                Washington University School of Medicine, therapists, members of our exercise
                                                classes, support groups, and individual patients and their caregivers.
                                                    These DVDs will be distributed
                                                 throughout the state of Missouri
                                                 to physicians, nursing facilities,
                                                  therapists, libraries, social work-
                                                  ers, patients, caregivers, and family
                                                  members. They were made possible
                                                   because of the efforts of the Fraternal
                                                   Order of Eagles, who raised funds
                                                   throughout the state of Missouri for
                                                    one year, with the goal of educating
                                                    those who deal with and experience Parkinson’s disease (especially those living
                                                    in rural communities) on the current treatment of this disease and resources.
                                                       We encourage you to contact the Greater St. Louis Chapter for further in-
                                                     formation, or to share the names and addresses of physicians who you see or
                                                     nursing facilities where Parkinson patients reside who may wish to receive this
                                                     DVD to learn more about the Parkinson Journey. CMEs for physicians will be
                                                   provided through WUSM.
                                              These may be ordered through our website at www.stlapda.org. n

 Volume 26, Issue 2                                                                                      St. Louis APDA LiNK        15
Washington University School of Medicine
American Parkinson Disease Association                                                                                         NON-PROFIT
Campus Box 8111                                                                                                               U.S. POSTAGE
660 S. Euclid Ave.                                                                                                                 PAID
St. Louis MO 63110                                                                                                           ST. LOUIS, MO
Address Service Requested                                                                                                   PERMIT NO. 1032



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Save These Dates!
  Mon., May 21 The 14th Annual Nat Dubman Memorial Golf Tournament
               with John ‘Mo’ Mozeliak, GM of the World Champion St.
               Louis Cardinals, as the Honorary Chair and Brook Dubman,
               Chairperson
               The golf tournament takes place at Lake Forest Country Club and
               includes 18 holes of golf with cart, course beverages, breakfast,
               lunch on the course, cocktail reception, appetizers, prime rib dinner
               buffet, award ceremony, auction, and Q & A with Mo. If golf is not
               your bag, join us after the round at 3:00 p.m. for open bar, appetizers,
               dinner buffet, Q & A with Mo and auction! See golf invitation on
               website www.stlapda.org or request an invitation for registration
               and entrance fees at 314-362-3299. Breakfast and registration start
               at 8:30 a.m. with a 10:00 a.m. Shotgun Start.
  Tue., June 26 PD Expert Briefing Webinar
                Check PDF website at www.pdf.org/parkinsononline or call 800-457-6676 for further information.
                All sessions meet from 1:00-2:00 p.m. (eastern time).
                Understanding the Progression of Parkinson’s with Ronald E. Pfeiffer, MD.
  Sat., July 14    Early Diagnosis and Signs of Parkinson’s That Doctors Often Miss
                   Dr. Michael Rezak, Medical Director of the APDA National Young-Onset Center, will speak at Congregation Shaare
                   Emeth, 11645 Ladue Road. The program will start at 1:00 p.m. PEP flyer will be mailed in June.
  For those of you who were unable to attend the Progress in Parkinson’s disease research update held on April 1 with Dr. Joel Perlmutter,
  you may purchase a DVD of his presentation for $15 including shipping. The 450+ in attendance agreed that this was one of Dr.
  Perlmutter’s finest programs.

				
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