The Power of Pain Foundation Article for PAINWEEK Journal
2014 PAINWeek Journal (PWJ) Vol 2, Q 2 issue
By Barby Ingle
The mission of the Power of Pain Foundation (POPF) is to promote public and professional awareness of neuropathy conditions while educating those affected by the neuropathy pain, as well as their families, friends, and health care providers. Our foundation also teaches patients to be self-advocates, promotes action-oriented awareness, and tries to improve pain care through activities and efforts that eliminate under-treatment.
POPF was created by Ken Taylor and the Ingle Family, because of their commitment to helping others, and because I didn’t get the proper or timely help I needed in dealing with reflex sympathetic dystrophy (RSD). The foundation evolved from a family discussion and morphed into a powerful communications vehicle. Each Thanksgiving, our family meets to discuss potential projects that we can do as a family. In 2006, the discussion turned to how hard it was for me and so many others to find a diagnosis and receive proper treatment. As with many chronic conditions, the sooner RSD is treated properly, the better the chances for remission and recovery. POPF gives us the opportunity to share our knowledge for overcoming the challenges that pain patients face every day with activities of daily living. My family and I had to learn the hard way and now want to pass on our knowledge to give hope and answers to all patients, caregivers and health professionals. We have over 100 volunteers around the country that help run POPF. The POPF focuses on education, social connections, RSD quilt project, and public awareness projects involving all conditions having neuropathy pain involvement.
Our educating projects focus on the patient, caregivers, and healthcare professionals. In the past 7 years we have been a part of 68 educational events in many states including California, Washington, Nevada, Arizona, Kansas, Missouri, Oklahoma, New York, and Virginia. The ultimate goal of the POPF is to give chronic pain patients the education and ability to perform their regular activities in the community. We also team up with community sponsors to help bolster society’s ability to provide full opportunities and appropriate supports for its pain citizens. Through supporting education for pain patients, family members, caretakers and medical professionals, we make an important contribution to the overall knowledge and treatment of chronic pain. This allows our foundation to affect millions of lives.”
To increase public awareness of what pain patients deal with on a daily basis, we host programs that reach crowds that might not normally hear about our messages. We do movie nights where first we do a presentation about the POPF or show a PSA. At our pain day at the park/rink, we team up with the pro sports teams to reach 20,000+ people in attendance. We have tables on the concourse giving away free resources for the community, do an on field presentation, and bring in a POPF celebrity ambassador to perform and draw in game attendees. Advertising in National magazines and distributing awareness bracelets to the public also increases awareness. Another awareness tool: Give Me a B.R.E.A.K. cards, to hand out to friends, family, and others with whom a person has interactions. The acronym B.R.E.A.K. includes notices – Realize that I look healthy but have limitations – and requests – A – Ask before you touch me. These cards are a quick way to set expectations; give one to your hairdresser prior to getting your hair done. They can also help remind people, for future interactions.
Many patients in pain tend to isolate themselves from attending life events or even going shopping. The POPF hosts a variety of events to get the patients back into society at some functioning level. We have online webinars, a Facebook page, twitter following, comedy shows, and provide peer-to-peer mentoring to patients and caregivers via phone, email, and social media outlets. We help patients do the research needed to be their own best advocate. Patients can email or call to get names of providers who specialize in their specific condition.
You can be your own best advocate by taking steps to lead your life. Don’t rely on others to make your decisions, do your research or keep your organized. To become the Chief Of Staff of my own medical team, I focused on five areas: finding the correct doctor, preparing for and planning what to do at the doctor visit, following my care plan and staying on top of my medical billing statements. Staying organized and prepared helps me get through the day with less stress, anxiety and pain. It can do the same for other pain patients.
The POPF sponsors the BlogTalk radio show Living with HOPE, hosted by Trudy Thomas, the POPF Nevada Ambassador. Trudy interviews patients and caregivers, doctors and therapists, both traditional and alternative practitioners. Living with HOPE empowers, informs, and educates the listeners with information that may not be readily available in their local area. Through the power of the internet Trudy has the ability to communicate with and speak to some of the most knowledgeable doctors and researchers in the world. Topics have included: meditation, biofeedback, guided imagery, breathing exercises, holistic healing, coping strategies, depression spinal cord stimulation, chronic pain treatments, ketamine, Calmare (Scrambler Therapy ®), Cortical Integrative Therapy (CIT®), mirror box therapy, low light laser therapy, functional restoration, intravenous immunoglobulin, neuropathies, complex regional pain syndrome (CRPS), and neuroinflammatory disease.
One extremely important project POPF is very excited to be hosting is the RSD Quilt project. We are doing all in our power to promote and grow this great cause to bring much deserved and needed awareness to RSD/CRPS. The RSD Quilt Project is on display at many of our events and also requested by individuals in other charities to display at their own events and fundraisers all over the country. It is a great way to show the public a display of our emotions and represent our physical pain without words. All squares sent in to be dedicated to the RSD Quilt Project will also be added to the slideshow at www.rsdcrps.org. If you would like to take part you can send a 12″ x 12″ patch to be added to Power of Pain, C/O RSD Quilt Project, 38556 N. Dave Street, San Tan Valley, AZ 85140.
To learn more about the POPF; visit www.powerofpain.org.
