An interview with Nancy Poland Advocating for Parkinson’s Patients and Caregivers.
Biography
With grace and hope, Nancy Poland provides written and spoken communication on caregiving, loss, and other valuable topics.
A life-long resident of the Twin Cities in Minnesota, Nancy and her husband John raised two sons, are both retired, and continue to contribute to their communities. She loves to travel, write, learn, organize pictures, and analyze the plots of English detective shows with her husband.
Please tell me a little about your background.
I am retired, having worked for the non-profit NMDP in the contracts and procurement field for 28 years. Managing contracts for a clinical trials network for eighteen years taught me a lot about stem cell therapy, clinical trials development, collaborating with pharmaceutical companies, and overall research principles.
I wrote a Master’s Thesis on privacy principles.
Drawing from my experience as a caregiver for my parents, and subsequently studying principles in advocacy and care, I offer resources to help caregivers be prepared to help advert a crisis.
Can you tell me more about your Advocacy?
I was a volunteer community educator for the Alzheimer’s Association for four years. I now write and speak about caregiving for two major organizations, The Price of Business and Alzheimer’s Speaks.
I educate and provide resources to benefit patients and caregivers. Especially important is encouraging people to have legal and financial documentation in place, especially early in the disease process.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
When my dad was diagnosed with Lewy body dementia, I knew virtually nothing about the disease. I then researched this disease and discovered Parkinson’s and Lewy body are closely related. I believe the research efforts for neurological brain diseases will benefit both Parkinson’s and Lewy body patients. I am also quite interested in dementia that results from Parkinson’s.
What type of goals do individuals with Parkinson’s have when seeing your Advocacy?
In the story about Sandra and Ken in “Remarkable Caregiving,” we learn how they kept Sandra’s dad with Parkinson’s active and healthy as long as possible. She also talked about steps they took to care for themselves as caregivers. I want to encourage Parkinson’s patients and caregivers to live as good of a life as possible.
What type of training and how long are the programs?
I have not yet developed specific programs. I am flexible in meeting the needs of the audience for whom I write or speak.
What effect can your Advocacy have on an individual with Parkinson’s?
They can find encouragement and hope, both during in the course of their disease, and for future generations.
What would you like to see as a future goal for your Advocacy?
I hope to be able to find more speaking opportunities to caregiving groups. This has inspired me to write on Parkinson’s disease under the contract I have with “The Price of Business.”
What events do you participate in?
Book fairs, classes for faith communities, speaking engagements, podcasts.
How does this also assist the caregivers?
I want caregivers to learn about tools they can utilize to make caregiving more manageable and less traumatic. I also want to encourage people who are not the major caregiver to find ways to help. In another story in “Remarkable Caregiving,” a man called himself the “Relief Pitcher,” taking his best friend who had Parkinson’s out for lunch, helping adapt their home, and giving his friend’s wife a much-needed caregiving break. It is okay to ask for and take help!
How can someone get in touch? What is your website?
email: author@nancyrpoland.com
How can others also become advocates for awareness?
Advocate with law and policy makers for funding to support neurological disease research. Consider participating in a clinical trial. Utilize social to share information regarding the need to advocate for Parkinson’s Disease.
In your opinion, what is the key to effective advocacy?
Be consistent with your message. Reach out to policy makers on all levels of government regarding funding and resources. Support private organizations such as “Together for Sharon,” “Parkinson’s Foundation,” or “The Michael J. Fox Foundation for Parkinson’s Research. By joining forces, financially, with social media, or by educating our colleagues, we can make a larger impact.
How can we better fundraise to support a cure for Parkinson’s?
Round up friends and family to participate in local fundraisers. Share prepared emails people can send to lawmakers to advocate for funding. Tell your own story.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I eat healthy and keep moving.
Why should people who don’t have Parkinson’s care about this?
Taxpayers should care because of the extraordinary cost of this disease. According to the Parkinson’s Foundation the combined costs of Parkinson’s disease is estimated to be nearly $52 billion per year in the U.S. alone. Medications cost an average of $2,500 a year and therapeutic surgery can cost up to $100,000 per person.
Have you had any family members or relatives affected by Parkinson’s disease?
An Uncle (not by blood.) My dad, who had Lewy body dementia, which is similar.
If you had one song that would tell us more about you or represent your life, which song would it be?
Amazing Grace
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
The power of storytelling can inspire and uplift. Share your story to support and encourage others experiencing the challenges of Parkinson’s disease.