Our Team and advocates

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Neighbors (for April 2022)

Parkinson’s Si Buko

Twilight Zone, written and narrated by Rod Serling, was a science fiction/morality series on TV (black and white—no color TV back then) first aired in late 1959 and ran for five years. Most people believe the opening monolog was “Imagine if you will…” Like so many famous (but false) quotes, Serling never spoke those words.  Instead, his standard opening was, “There is a fifth dimension beyond that which is known to man. It is a dimension as vast as space and timeless as infinity. It is the middle ground between light and shadow, between science and superstition, and it lies between the pit of man's fears and the summit of his knowledge.".

Imagine if you will a woman in prison. She is a wife and mother. Her crime is so serious her husband takes their children and leaves town to escape the resulting stigma. She is considered so dangerous that when she is fed, a bowl of food is pushed to her using a long stick. Anyone who gets too close may be in danger. She is left alone most of the time—in solitary confinement. Nevertheless, her son sneaks back to visit his mother and watches her suffer and slowly die due to lack of care while imprisoned. Her crime? She has Parkinson’s.

Rod Serling: It may be said with a degree of assurance that not everything that meets the eye is as it appears.

Living in Uganda, Kabugo Hannington’s mother, Milly, was thought to be cursed for practicing witchcraft. Neighbors thought it was contagious and Milly ended up isolated in a virtual prison.  Years later, Hannington googled: What makes people shake? He realized his mother had Parkinson’s—a disease, not witchcraft. Hannington started to put stickers on buses and taxis with information about PD and contact numbers. He received over a hundred calls in the first week from people wanting to know more.  His next step was to set up a workshop. Hoping for about fifty participants, Hannington was excited and overwhelmed when 167 showed up. Starting with the basics, he told people not to shun, avoid, or run away from people with the symptoms of Parkinson’s. “Go see a doctor,” he told them.

See a doctor? Good luck with that. There is only one neurologist in Uganda prepared to treat PD patients and little, if any, medication. Knowing of the extremely limited resources, many people would have been overwhelmed. Instead, Hannington took on the role of teacher. He organized (and continues to provide) seminars to teach doctors and nurses about Parkinson’s. At least once a month, Hannington and his organization (Si Buko Parkinson’s--Parkinson’s is not witchcraft) have an activity to promote awareness, advocacy, and knowledge about PD. It may be a fun run, a workshop, a dance, or a public service announcement.

Hannington (with the help of others) is now working to address another major obstacle—lack of available medication. Hannington knows of at least 143 people needing meds, but Parkinson’s Si Buko  can only provide for 26. Fortunately, Hannington is aware of current research that indicates exercise may help slow the progression of PD—he emphasizes exercise in his trainings. It is an amazing effort to do what you can with what you have.

Imagine if you will, the difference one person can make. Now, imagine if you will, what might happen if the world came together to eliminate Parkinson’s.

“We are one world, one Parkinson’s family, we need to be united,” was Hannington’s response when asked to summarize his hopes and dreams. With the help of many other people (especially Sherryl Klingelhofer) Parkinson’s Si Buko is now a 501c3 tax deductible charity (parkinsonssibuko.org) with a three-part mission: dispel myths/inform facts, train health care professionals, and secure access to  resources  for patients. You now know what Hannington is doing to make a difference. What will you do? What difference will you make?