Sherryl Klingelhofer on Advocacy

An interview with Sherryl Klingelhofer on Advocacy on December 5, 2023 by George Ackerman, Ph.D, J.D.




My father was diagnosed with PD in the year 2000.  As a coach and Phys Ed instructor he thought that exercise might be the way to deal with his bradykinesia and other physical symptoms.  My YMCA instructor training added to his expertise…at the time there was almost NO information concerning what I now call “medical moving”.  We developed a program that kept him better balanced and active throughout the day.


Since that time, I have added Delay the Disease, Tai Chi:  Moving for Better Balance and Master Trainer to be the best resource I can for those with Parkinson’s.


Can you tell me more about your organization?


Parkinson’s Si Buko (is not Witchcraft) Uganda began when Kabugo Hannington asked me to join his personal cause to educate communities about PD.  In rural areas it is believed the people are cursed and untouchable.  His own mother had been abandoned by the family to live miserably and die early.


What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure? 


My father’s illness made me want to share PD-specific moving with others because I knew it would improve their lives, too.


Subsequently, when I heard that people in Uganda with PD can’t even hug their children and grandchildren I HAD help Hannington if I could.  The contrasts between our countries, how differently my father and his mother had to deal with their illness!


What type of goals do individuals with Parkinson’s have when working with you?


As a free online resource, I post for many symptoms, principally physical.  But I get info to individuals who ask for help with their own specifics.


Our organizations Parkinson’s Si Buko Uganda (PSBU) & PSBUSA use our tiny financial budget to help PwP learn moves to slow the physical progression, as most cannot afford medication.  Specific exercise must be our first line of “meds”.


Simply getting the word out that Parkinson’s is a disease/disorder is a HUGE goal for individuals!  They can keep their families together and avoid the stigma of being a cursed person.


What type of training and how long are the programs?


When Si Buko conducts a training, we try to have a doctor as a speaker to educate Village Health Workers and medical personnel about the many aspects of Parkinson’s, and use a booklet taken from Stanford Medical’s diagnostic video.   The need for exercise is discussed and demonstrated.  The next day, folks from the area come to be examined by the new trainees and diagnosed.


What effect can it have on an individual with Parkinson’s?


The Village Health Workers stay in the community and are very respected.   An individual with PD now has a powerful resource that will help guide them and their family through the stages.  It changes local attitudes toward our clients, so they are no longer outcasts, but viable in society.


What would you like to see as a future goal for your programs?


Hannington and I want to reach all corners, all areas of Uganda with our message and our mission.  From there, we would like to begin to work outward into more of Africa.  Many other countries consider PD as witchcraft…and even those that don’t lack a good understanding of the disease.  We started Parkinson’s Si Buko USA (PSBUSA) two years ago to become a tax-deductible non-profit as a “sister” to PSBU.


What events do you participate in?


As a resource, I am online almost daily, but I attend our local PD support group, spoke at conferences, and loved attending the WPC in Portland.


Our Si Buko director, Hannington, was honored in Barcelona WPC this year for his advocacy.

He organized fun runs, awareness presentations and sends special invitations to or confers with guests who are influential in the community, the Bishop in Mukono, the regional Health director and mayor have been guest of Si Buko.


How does this also assist the caregivers?


I often post on my page about things a carepartner might find useful—about medication alerts, better products and symptoms that can come on slowly and how to monitor them.  But the biggest thing is that they themselves take care, too.  I used to teach lifeguarding:  “If the lifeguard isn’t safe, neither is anyone else”.  You get it!


In Uganda, it actually is the life or death of the client with PD.  Instead of abandoning a loved one, carepartners or caregivers realize they can be part of the family and be cared for and revered as are any other relative with an illness.


How can someone get in touch?  What is your website?


Under my name (spell it right LOL!) on facebook you will find my posts as resources for so much about Parkinson’s…you can read or follow…you don’t have to “friend” but if you do, please message me about your PD.


PSBU / PSBUSA website:

on facebook

and email


How can others also become advocates for awareness?


I think that being part of a support group is the most personal and down-to-brass tacks way to advocate!  You don’t have to reinvent the wheel:  these folks have been living with it for long enough to be the REAL experts.  Can’t tell you how often we hear “MY doctor never told me that”!


If a person wants to advocate for our organization, posting photos, sharing our successes, and putting on links to our website are appreciated.  We try to add their names to our advocacy list on the site.


What do you see as the differences between Parkinson’s care/resources in various countries?


To this I would answer in photos:


In your opinion what is the key to effective advocacy? 


WOW. I have to smile.  In the US we have support groups, organizations and medical services getting the word out.  Some are small and personal (support groups) and others are awfully flashy.  Gala events for donors don’t impress me as much as a community-based presentations.


But in the poorer countries in Africa, a Tshirt from a a fun run emblazoned with “Parkinson’s is not Witchcraft” can make a difference just by wearing it!


How can we better fundraise to support a cure for Parkinson’s?


I am not certain that finding the cure is as important as supporting those with the disease!  In the twenty-three years since Dad was diagnosed, little has changed for an actual CURE, they are still trying to find the KEYS to the cause.  And it seems a lot of repetitive costly studies are done trying to be the “one” university/person/research facility to claim the accolades.  Couldn’t one representative of each join a single research team to use the same dollars?


What if half of the money spent on research had been folded into free physical therapy for those living with it?  How many thousands, millions (?), of individual lives would have been improved and would keep being improved until something else changes in research answer?


What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?


My Dad ALWAYS used both PD-specific and cardio exercise, usually walking.  He did not use medications for Parkinson’s, he had so many meds and supplements for his heart issues.


Because I am so physically like my dad, I do complex moving and high intensity workouts.  That way I’ve gone far past the normal person my age…and if I develop PD will have a good foundation to keep physical problems at bay.


Why should people who don’t have Parkinson’s care about this? 


“Parkinson’s is the second-most common neurodegenerative disease after Alzheimer’s disease. Nearly 90,000 people in the U.S. are diagnosed with PD each year. More than 10 million people worldwide are living with PD.”


With those statistics, it would be rare to find someone who isn’t related to or knows someone with PD.


Have you had any family members or relatives affected by Parkinson’s disease? 


My Father, Hannington’s Mother


If you had one song that would tell us more about you or represent your life, which song would it be?


For myself:  STAND!  (Sly and the Family Stone)                                                                                        “Stand
In the end you’ll still be you
One that’s done all the things you set out to do…”


If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?


Move:  only you can do it for you.