An interview with Michelle Lane from Louisiana Walks for Parkinson’s & Ambassador for the Davis Phinney Foundation for Parkinson’s on July 6, 2023 by George Ackerman, Ph.D, J.D.
Biography
Michelle was diagnosed with Parkinson’s in June 2000 at the age of 32. Michelle’s first symptom was a tremor in her left index finger on New Year’s Eve 1998 at the age of 29 after preparing meals for the family party to ring in the New Year. Michelle is currently 55 years old. She is a life-long resident of New Orleans and has been married for thirty-six years to her husband, Ronnie. They have three children, and two grandsons. Michelle worked for a manufacturer’s representative for plumbing supplies for 17 years before retiring in 2004.
Michelle has been spotlighted in numerous local and national newspaper articles and has been interviewed by Medtronic, The American Parkinson’s Disease Association, Parkinson Disease Foundation, The Wall Street Journal and Forbes Magazine. She has also appeared on local news and political and medical talk shows. Michelle was a participant for three years in the clinical trial phase III of Rotigotine (Neupro), a dopamine against patch administered every 24 hours.
Michelle organized the first annual Louisiana Parkinson’s Walk in April 2003, which resulted in 450 participants and raised over $39,000 for Parkinson’s research. She then founded the Parkinson’s Association of Louisiana (PAL). She was the president of PAL, which had been very successful in raising money for PD education, support services and research taking place in the state of Louisiana.
PAL’s second annual PD Walk in April 2004 was named in memory of Grace Benson, wife of Tom Benson, owner of the New Orleans Saints & New Orleans Voodoo football teams. Mrs. Benson had Parkinson’s disease for 18 years and passed away in November 2003. The 2004 PD Walk raised $50,000 with 650 participants and over 800 attendees.
The Parkinson’s Association of Louisiana (PAL) and successfully raised over $200,000.00 for Parkinson’s research in 2-1/2 years by hosting three walks, a roast of her Movement Disorder Specialist and a Day at the races. Unfortunately, PAL did not survive Hurricane Katrina as was forced to dissolve. In 2012 as the city of New Orleans and the residents began to return, Michelle started Louisiana Walks for Parkinson’s benefitting The Parkinson’s Action Network (PAN). In eight years (2012-2019) the walk has raised over $500,000.00 with over 700 participants in 2017. Since 2017 the walk benefits the Davis Phinney Foundation to help those with Parkinson’s live well today. Due to the Covid pandemic there was no walk in 2020 and 2021. The walk resumed in 2022 and raised over $104,000.
In February 2003, Michelle established the first young Parkinson’s support group in Louisiana with five members. The group had grown to over twenty-five members in one year. She also visits and speaks with newly diagnosed patients on how to cope and live a productive life after the diagnosis. Her motto, which she shares with those who are newly diagnosed is, “Don’t say I can’t do something, just say you can accomplish this task but with a little more time and patience.”
Michelle was the Louisiana State Director for the Parkinson’s Action Network (PAN) since 2002, and in 2004 received the Louis Fishman Advocate of the Year Award at the Parkinson’s Action Network annual forum. She has appeared before her United States Congressman and also state Representatives and Senators to support funding research for Parkinson’s. In September 2011, Michelle was the recipient of the Milly Kondracke award at the Morris K Udall Dinner in Washington, D.C., which is a national award presented each year to an outstanding advocate for their efforts and accomplishments. Her activism has resulted in numerous local press conferences and speeches Michelle has given, including an invitation to speak in June 2004 at a national press conference in Washington, D.C., in an effort to ease the strict guidelines on embryonic stem cell research that was set forth in August 2001. This conference was aired on C-Span.
In 2014 Michelle along with her good friend Susan Sapir-Fields began the Parkinson’s Circle of Friends support group. An evening support group to provide support to those that are still working, or spouses are working during the day.
In 2015, Michelle was selected to join the Women’s & Parkinson’s Initiative and, in 2016 as a PAIR Advocate with the Parkinson’s Disease Foundation (PDF). Currently, Michelle is an ambassador for the Davis Phinney Foundation. Michelle loves to cook and bake. She takes great pleasure in seeing everyone enjoy her meals and desserts.
Please tell me a little about your background and what got you involved with awareness.
I was diagnosed when I was 32. Back then I had to use the old school Internet. I started chatting with people and I decided to get involved. I was networking for many years and now I am heavily involved with fundraisers.
Can you tell me more about your organization?
The Davis Phinney Foundation
He was a cyclist and had Parkinson’s. He was diagnosed the same year I was. He said every
victory counts. Even if you put on a pants leg yourself, that is a victory for that day. His mission
was to help people live well with Parkinson’s since there was no cure.
Since 2004, the Davis Phinney Foundation has brought to life some of the most important programs, research, content, and events for those affected by Parkinson’s. Our community includes people living with Parkinson’s, Parkinson’s care partners, families, and friends of those living with Parkinson’s, physicians, and Parkinson’s allied health professionals.
We all want a cure for Parkinson’s. However, until that happens, we know that people are going to live a very long time with it; therefore, the most important work we can do is to help them live well TODAY. We do this by providing education, tools, resources, and inspiration that touch on every aspect of life: physical, emotional, intellectual, social, and financial.
LIVE WELL.
We share stories and celebrate victories. We are authentic, energetic, and fun.
INSPIRE ACTION.
We take an Olympic level approach. We empower positive change and give people hope.
CONNECT THE COMMUNITY.
We bring the right resources to the right people. We are collaborative; we are better together.
See https://davisphinneyfoundation.org/about/
LOUISIANA WALKS FOR PARKINSON’S
Louisiana Walks (LA Walks) for Parkinson’s is an annual celebration of living well, benefiting the Davis Phinney Foundation. You can look forward to a fun-filled event with a silent auction, live music, Parade of Prizes, local New Orleans food, Parkinson’s resources, activities for kids, and more at this family friendly event. This year’s 10th annual walk is dedicated in loving memory of John Humphreys.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Because I have Parkinson’s I wanted to get involved. I also wanted to make other people aware. I always tell people when I was first diagnosed, it takes a little more time an effort, but you can still live well.
I told my husband I am going to a Parkinson’s event, and he was surprised but it helped me network and I was able to even go to Capital Hill for awareness.
What type of goals do individuals with Parkinson’s have when working with you?
The focus is helping understand the progression. Exercise and keeping people moving can help deter the progression of the disease. There are manuals, campaigns and many events that can help individuals with Parkinson’s. It is amazing how much support is out there if you seek it out.
What type of training and how long are the programs?
We create inspirational tools and resources that help people live well today with Parkinson’s. From our online webinar series to our Every Victory Counts® manual to our blog to our Parkinson’s Podcast, our educational content helps hundreds of thousands of individuals and families take action to improve their quality of life every year.
See https://davisphinneyfoundation.org/resources/
What effect can it have on an individual with Parkinson’s?
It helps individuals investigate the disease but find more help and insight on how to cope. We try to spread hope and support for those with Parkinson’s.
Our impact
We have reached hundreds of thousands of people with practical tools and resources focused on helping people with Parkinson’s improve their quality of life. Until there is a cure for Parkinson’s, we’ll continue to lead the way in quality-of-life resources by bringing innovative programs and research to life. We provide information, inspiration, and tools to help people with Parkinson’s live well today.
What would you like to see as a future goal for your programs?
To find ways that can slow the progression of the disease. Ultimately to find a cure.
Financials
Since we were founded in 2004, we have raised millions of dollars to improve the lives of people living with Parkinson’s. Contributions from individuals account for nearly two-thirds of our annual operating budget. Combined with generous grants, these funds enable us to reach further, build deeper connections, and foster meaningful change in the Parkinson’s community.
What events do you participate in?
Louisiana walks for Parkinson’s and many conferences throughout the year. I also have 5 Facebook support groups.
How does this also assist the caregivers?
Davis’s wife, Connie Carpenter Phinney, co-founder of the Foundation, is a major speaker and caretaker for the Parkinson’s community.
During her time at the helm, she has supported many of the critical programs that have allowed us to improve our reach, raise our profile, and get a seat at the most influential tables in the Parkinson’s space. She championed our move from in-person to online events, our biggest yearly fundraiser, Tour of Sufferlandria, our first-ever Victory Summit event specifically for Care Partners, and the establishment of a new headquarters for the Foundation in Louisville, CO.
Additionally, she leads our monthly meet up for care partners, is a key contributor to our monthly poetry group for people living with Parkinson’s, has spoken at The Victory Summit Event series we host, wrote the Foreword of our new Every Victory Counts® Manual for Care Partners, collaborated on the Rulebook for Care Partners, and was the catalyst we needed to create a strategic plan that will move us toward the next evolution of the Foundation. And she did all of this while serving as the primary care partner to the Foundation’s visionary and her husband of almost 40 years, Davis Phinney.
More on Connie can be found at https://davisphinneyfoundation.org/thank-you-connie-carpenter-phinney/
How can someone get in touch? What is your website?
michlane23@gmail.com or https://davisphinneyfoundation.org/event/la-walks/
Facebook Groups:
Parkinson’s Support Group
Parkinson’s Caregivers Support
YOPD Forums DBS Parkinson’s Support
Caregivers of Parkinson’s Disease Support Group
YOPD Forums Parkinson’s Support
Juvenile Onset Parkinson’s.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Don’t look into the future, don’t say you can’t because you can,
More on Davis Phinney
Wondering how we got our name? Davis Phinney is an Olympic Bronze medalist and Tour de France stage winner who has celebrated the most victories of any cyclist in American history. From the late 1970s until his retirement from professional cycling in 1993, Davis achieved more wins—328 victories in all—than any other U.S. cyclist.
In 2000, after years of feeling not quite right, and an almost endless round of tests, Davis was diagnosed with young onset Parkinson’s disease (YOPD). Finally, the years of battling constant fatigue, the mental fogginess, the muscle cramping, and bouts of sudden numbing weakness had a name.
Realizing early on that he could take action to feel healthy and strong despite his Parkinson’s, Davis started the Davis Phinney Foundation for Parkinson’s to promote and fund innovative research that seeks to improve the quality of life of those living with Parkinson’s. Since then, the Foundation has expanded far beyond research to become a leading source for education and resources to help people with Parkinson’s take action to live well today. Annually, the Foundation reaches more than 1.5 million individuals and families through online resources, events, community engagement, and more.
Today, Davis lives in Boulder, Colorado, with his wife and fellow Olympian, Connie Carpenter-Phinney. They have two grown children Taylor and Kelsey, who are involved with the organization in a variety of ways. Davis continues to celebrate the daily victories in his life, inspire others by living well, and share his message of optimism with those who need it most.
See https://davisphinneyfoundation.org/about/
References
Dave Phinney Foundation for Parkinson’s (2023). Meet Davis. Retrieved from https://davisphinneyfoundation.org/about/
Dave Phinney Foundation for Parkinson’s (2023). Thank you, Connie Carpenter Phinney. Retrieved from https://davisphinneyfoundation.org/thank-you-connie-carpenter-phinney/