During National Family Caregivers Month this November, PDF calls special attention to care partners who are helping to find a cure for Parkinson’s.
We are lucky that among PDF’s network of Research Advocates, (all part of the Parkinson’s Advocates in Research program) there are many talented care partners who are working on the front lines with researchers. In this interview, we highlight two of these PDF Research Advocates, care partner team Kim and Libbe Erickson of Stillwater, MN. They joined the program just two years after Kim’s diagnosis in 2010. Here are their insights.
Q: You are PDF Research Advocates as a team. Why is this involvement so important to you?
A: Our work as PDF Research Advocates has given us so much! At a time when we were overwhelmed by the enormity of the diagnosis, we were approached with the opportunity to apply to the PDF training and become Research Advocates. We were hungry for knowledge, which we got in spades at the training. What we did not realize at the time, was that being a part of the program would give US a gift we did not expect. Getting involved in something bigger than us redirected our energy away from worry, and put it into going out into the community and meeting those who are working to treat/cure this disease, and those who are coping in many inspiring ways.
Q: What most excites you about the work you do together as PDF Research Advocates?
A: The best part of this journey has been tapping into the positive energy abundant in our encounters with people at conferences, support groups and in research. We have had the opportunity to present our talk about research advocacy to support groups, table at conferences, and even be part of panels at events such as the Davis Phinney Summit and the World Parkinson Congress. We feel that every bit of energy we invest comes back to us in renewed spirit and gratitude for all the people working to beat this disease.
Q: November is National Family Caregivers Month. How do you apply this month to the Parkinson’s community or your journey with PD?
A: We recognize that dealing with this disease is a journey we have just begun. Facing what the future brings is not so scary when we see so many people who have coped with their challenges with grace and good humor, still reaching out to contribute in some way to advance research and beat this thing. Some of our dearest friends have been acquired in this year since becoming PDF Research Advocates. We have both, as a person with PD, and a caregiver, taken much strength from these friendships.
Q: To all care partners out there reading this, what message do you have about getting involved in the cause and cure? And more specifically, why would you recommend getting involved as PDF Research Advocates?
We feel that being PDF Research Advocates has given us a sense of having gained some tangible benefit simply by being a part of this great program. If we can, in even some small way, help speed the quest for better treatments and a cure, it will be gravy.
We have been so impressed with the caliber of the PDF staff, and the work they do. It has been a great honor to have been chosen to participate. If someone thinks they have nothing to offer, or are afraid they don’t know enough to be of help, no worries! Between the training you will go through to join the program and the ongoing help PDF offers, your experience as a PDF Research Advocates will be off and running!
- To become PDF Research Advocates like Kim and Libbe, apply to the next PAIR training at www.pdf.org/pair.
- To hear Kim and Libbe discuss their roles as Research Advocates take our online course (see part four) by visiting www.pdf.org/paironline.
- Are you a care partner? If you are looking for support contact PDF’s HelpLine at (800) 457-6676 or firstname.lastname@example.org or visit www.pdf.org/caregivers_month to learn more about our programs.