Ohio Polio Survivors gathered this past weekend in New Philadelphia, Ohio for their annual conference and celebrated their 30th anniversary of the organization. District Governor Julie Brandle was honored to speak to attendees about Rotary's worldwide eradication efforts and how Rotary members around the world assist Polio survivors that have residual symptoms from Polio known as Post Polio Syndrome.An excerpt from her remarks can be found here:
There are 15-20 million polio survivors in our world. Its reported 60-75% are subject to having Post Polio Syndrome. According to the diagnostic criteria developed by the March of Dimes, Post polio Syndrome is new muscle weakness or decreased endurance that occurs in people with a history of paralytic polio, after partial or complete recovery from the infection and a long interval — typically 15 to 30 years — of stable functioning. The weakness comes on gradually, persists for at least a year, progresses slowly, and can be accompanied by fatigue, muscle wasting, and muscle and joint pain. Some patients also develop sleeping problems, breathing problems, and difficulty swallowing. Currently with no cure for post-polio syndrome (PPS), treatment focuses on helping with symptom management and improving quality of life.
In researching the efforts to assist those living with Post Polio Syndrome, I searched near and far and first landed on the generous work of the Warwick Rotary Club in Warwick England. This
Rotary Club funds a program, the first of its kind, by PhysioFunction in Northampton and incorporates aquatic and land-based physiotherapy. Kirsten Good, the leading physiotherapist who has initiated the program said: “We have a number of polio survivors attending our groups every week, and the funding we have had to subsidize the program has made it very affordable for them.” I believe this program could easily be modeled in the US in places where these services are not offered.
Rotary Club funds a program, the first of its kind, by PhysioFunction in Northampton and incorporates aquatic and land-based physiotherapy. Kirsten Good, the leading physiotherapist who has initiated the program said: “We have a number of polio survivors attending our groups every week, and the funding we have had to subsidize the program has made it very affordable for them.” I believe this program could easily be modeled in the US in places where these services are not offered.Minneapolis Rotary Post-Polio Conference
Twenty-five District 5950 Rotarians from 19 clubs welcomed 300 participants at the "Life After Polio: Realities and Practicalities" conference held on October 2 at the Minneapolis conference with Courage Kenny Rehabilitation Institute. It was a day filled with advice from medical professionals on methods of dealing with post-polio syndrome, displays of photographs, scrapbooks, and magazines containing information about polio treatments in the 1940's and 1950's, movies of Sister Kenny Institute and the early days of patient care, and a chance for polio survivors to share their common experiences.
Polio Survivors Rotary Action Group
I went further to learn about the now defunct International Polio Survivors Rotary Action Group.
Though their goals included those pertaining to eradication and building awareness, 2 of their goals were to:
1. To support and promote projects of all sizes at the local club, district, and international level that will improve access to quality health services for people with disabilities; strengthen rehabilitation services and include access to assistive products.
2. Initiate Community Based Rehabilitation Centers (CBR) where feasible to identify and provide restorative care for polio survivors.
This year the Action Group folded their funding into the Rotary Foundation and ceased meeting due to what is described as a Rotary International change to the guidelines and requirements for a Rotary Action Group and unfortunately, they were not able to keep to these new standards. At the April 2023 RI Board meeting, the board expressed their deep appreciation to the Polio Survivors Rotary Action Group for its 17 years of service and terminated the group.
On a more local level Rotary Clubs and Districts are assisting polio survivors individually with personal grants, for equipment, adaptive home improvements, and in one case a generator. This past week for example Martha’s story This polio survivor is one of the last still using an iron lung ventilator https://www.npr.org/2021/10/25/1047691984/decades-after-polio-martha-is-among-the-last-to-still-rely-on-an-iron-lung-to-br was shared with my District Governor class from our Zone. She lives in OK and still uses an iron lung today. Her Rotary district was collecting funds to assist her with these needs. Rotary Clubs all around the world raise funds for programs, services and advocacy for Polio survivors through fundraisers as well.
What sort of Rotary projects might be suitable and contributive to aid support for post-polio survivors?
- Orthopedic surgeries such as are found in India and other developing countries.
- Purchasing wheelchairs, crutches for polio survivors internationally or to local post-polio groups to assist members in need with the purchase of assistive devices.
- Creation of rehabilitation clinics or expanding existing clinics to address assistive devices needs as well as proper therapies.
- Addressing vocational training and education for the disabled.
- Sponsor a local survivor to attend an important meeting, conference, or retreat.
- Collaborate with other groups to provide surgery, assistive devices, vocational training and education for people with disabilities through Rotary Foundation Matching Grants.
- Co-sponsor a regional educational conference about PPS Consider raising funds to send teams of post-polio experts and survivors to join the teams of PolioPlus workers in endemic countries or right here at home to locate and organize local polio survivors in order to identify their needs and begin to provide educational and advocacy efforts for appropriate medical and rehabilitative services.
When DG Brandle finished presenting she asked the audience members who were all Polio survivors what assistance they would like to see from Rotary. They had a wonderful conversation.
Please consider projects for Post Polio Syndrome. If you want to talk further about the topic please contact Julie Brandle at jbrandle@metisconstruction.com.