An interview with Lisa Chalker: One Face of Parkinson’s- NEVER GIVE UP AND NEVER GIVE IN on January 24, 2025.
Biography
My name is Lisa Vullo Chalker, and I am the author and advocate known as: “One Face of Parkinson’s.” I moved to Daytona Beach seven years ago from South Florida, where I was enjoying the life of my dreams as a successful business owner. It was there in 2009, at 44 years old, when my symptoms began, and the early onset of Parkinson’s Disease changed my life forever. It was a left-handed pinkie finger tremor that began inauspiciously one morning and never stopped. It would be a long five years before I would even be able to put a name to the problem.
Can you tell me more about your Advocacy?
It came about by accident. Most people who are diagnosed with PD don’t know what it is. The only thing I knew was that Michael J. Fox had it, and I grew up watching him on television. When I was told, I was both relieved and frightened. In fact, that movement disorder specialist, Dr. Cenk Sengun, gave me his personal cell phone number and told me to call him if I needed ANYTHING. Through my tears, I asked if I was dying. He said, “Why would I say that?” I told him, “Because only oncologists and hospice workers give their cell numbers out! Never doctors!!!” He laughed and told me I would get “used” to this. I swore that would never happen. I went home and began to cope with the news. I did it out loud, online, by starting the blog, “Onefaceofparkinsons.com.” I wanted to document the changes coming and share my journey with others. That was 2014. Since then, my advocacy has taken on several forms. Many of those paths you’ll hear about today. If anyone is interested in getting involved with any of them, feel free to contact me and we’ll get some information off to you.
What is your passion, and how did you get involved in Parkinson’s awareness and hope for a cure?
My nature is to be a caretaker and an empath. After the shock that I had an incurable disease, I made a list of things I had to do. You can’t tackle an issue if you don’t have a plan. From day One, I told myself, “Never give up and never give in.” And that became my mantra. I started to meet important movers and shakers who knew people who had PD and who cared for a loved one who had it. I was introduced to doctors and allied health professionals who could help me. I learned how important a Movement Disorder Specialist is vs. a general neurologist. I absorbed everything. I immediately signed up to participate in local trials to be one of the first to try the newest therapies coming to the marketplace. I did this through the PD Trial Finder tool on the MJFF website.
I also wasn’t going to sit around and do nothing. Naturally, I developed campaigns to raise money and awareness. One is still up and running today. Go to INKFORPD.COM and you’ll find amazing people at ConsciousInk.com. Based in Oregon they are nature lovers who manufacture high-quality temporary tattoos that are positive thoughts you apply to your skin. Ingenious, really; you can’t help but look at them to remind yourself that you are strong and meaningful. They help you to get healthy and live your best life. They are so beautiful. They contacted me after reading about me in 2016 and asked if they could help me with a fundraiser. They gave me free rein to pick 10 tattoos for each of two series and come up with a theme, RACE FOR THE CURE. They designed an exclusive PD tulip logo tattoo for us. There are two series you can purchase and wear – one for the patient and one for the caretaker that has wellness and gratitude themes. A portion of the sales proceeds goes to PD research every quarter. I am very proud of that campaign that continues to raise awareness.
What type of goals do individuals with Parkinson’s have when seeing your Advocacy?
My blog started attracting attention from patients, caregivers, doctors, the press, and those who asked me to speak to audiences. In fact, it was a Top 10 blog award winner for 5 years running from Feedspot.com. I was honored to share my story & more importantly, my knowledge. It gave my life meaning again after forced retirement had me feeling less than normal. My blog was very honest and covered the good, bad, and the ugly. I wanted to reach people, especially the newly diagnosed, in hopes if they relate to my personal journey, they would, in turn, be less frightened and more proactive in their own treatment plans. I fielded emails from readers and reached out to help them, many of whom are good friends today.
What type of training and how long are the programs?
I don’t have a program, per se. I meet one-on-one (by phone or in person if they are local to me) with those who have questions and try to share as many resources as possible with them to jump-start their plan of attack so that they don’t waste the same resources and time that I did without an advocate. I wish I had the first five years back to do over again, like they do, with a fellow Parkie’s help when something new or unknown appears.
My blog also landed me as a regular for a Sunrise, Florida rehab facility specializing in the LSVT BIG and LOUD programs, where I participated as a patient. They asked me to return as a featured speaker to give informative presentations in their community outreach program to patients, caregivers, and healthcare workers, including doctors. I closed each presentation with a plea to the audience members who were healthy without PD. I would ask them to take a moment of grace before shutting their eyes at bedtime to listen first for the peace and stillness that they don’t realize they can hear and then give a gratitude prayer that they don’t have to live like us. I wish I had appreciated it more myself before that fateful day.
What effect can your Advocacy have on an individual with Parkinson’s?
One benefit of my advocacy was the opportunity in April 2018, to represent millions living with PD as a member of a Community Advisory Board at the 70th Annual American Academy of Neurology (AANA) Conference in LA which was well attended by 14,000 physicians and staff. It was amazing. The Snow Companies ran across my blog and contacted me to recruit me for this incredible engagement. They bring patients together in focus groups to better understand & get their feedback on medication side effects, packaging, marketing campaigns, etc. before launch occurs. It was so much fun and a great honor for me to speak to such a prestigious group.
What would you like to see as a future goal for your Advocacy?
Well, you may know that my life made a dramatic turn at the end of 2020, in the 12th year of my disease. I was turned down three times in the 30 months prior for Deep Brain Stimulation Surgery. I made a final attempt and was accepted by the neuro-surgical team at the University of Miami (Florida) for DBS surgery in an emergency scheduling. In fact, I bumped into our friend, Dan O’Brien, forward from his appointment to get mine down just before his. It was incredible. The medical device from Boston Scientific, their Vercise equipment, was turned on by Dr. Cornelieu Luca on January 8, 2021, and in a nanosecond, I was returned to the peace and stillness of my old self. Quieted was every symptom I had of PD, whole body dystonia, and dyskinesia; my hands were free, and my legs walked normally. I felt like I was in a Baptist Church and the preacher said, “Stand up! You are healed!” It was not short of a miracle, and 4 years later, I am still living in a dream. It’s amazing, and I am so incredibly grateful to the team at Boston Scientific and the U of M surgical team for the joy I feel today. I made an instant pact that day to raise money for the training of additional surgical teams who can speed up the installation of these and similar devices to more of the 10,000,000 sufferers worldwide.
In most recent developments, you may know that the MJFF’s team discovered a biomarker in 2023 that can detect the earliest signs of PD in living people; I am more confident than ever that a cure will be released in my lifetime. I am hoping PD is wiped off the planet with a targeted vaccine.
What events do you participate in?
I volunteer with my local PD association, the Parkinson’s Association of Greater Daytona Beach, whose Executive Director there is an incredible guy who does not have PD; his father did and everything he does is in honor of him now. His name is Vince Kinsler.
How does this also assist the caregivers?
At the Daytona PD Association, they have both patient and caregiver support tracks in combined and separate programs every month. The celebration of togetherness is truly a hallmark of that chapter. The fundraising walk raises a huge amount of money each year thanks to its fearless leadership and local corporate sponsorship.
How can someone get in touch? What is your website?
There is a funny story about my domain name. I didn’t realize that my website renewal was pending at the same time as my DBS surgery – the same day, in fact. I was oblivious and didn’t check it or update it until I went to edit it after January 8th, when my world was back to normal. I typed the address in, but all my work was gone (or so I thought). It was the domain name that some opportunistic person stole from me and offered to sell it back for thousands of dollars. I thought to myself that there had to be a higher power at work here, and now is my time to live normally for a while before the symptoms return one day. You know the device is not a cure; it only relieves the symptoms temporarily. The disease still marches on underneath. Someone watching over me said, “You’re okay; you don’t need it for now. Let it go.” And I did. But your listeners can email me at lachalker@gmail.com, anytime. By the way, there is a website builder where my blog still lives, and I plan to publish it as a book as One Face of Parkinsons in the future.
How can others also become advocates for awareness?
Volunteer volunteer volunteer. You don’t have to have PD. Association meetings. Trials are for those with and without PD. Participate in walks and raise funds. Take Rock Steady Boxing classes, which are designed for PD patients. If you have PD, don’t go it alone; reach out to others. You are not alone. EVER.
In your opinion, what is the key to effective advocacy?
Being curious. Being interested. Think outside of the box. Treat everyone you meet with kindness. Host a PD fundraiser yourself and collect the money through a separate source like a GoFundMe account, for example. If you have PD, there are multiple online seminars you can attend to get more information. The Daytona PD Association has printable resources that you can download to help you get organized in case of any emergency. Go to parkinsondaytona.org and click on the RESOURCES tab.
Be kind to yourself and to others. Caregivers are people, too, and need time for themselves. Don’t ever give up and don’t ever give in. There is so many good things on the horizon for Parkinson’s. The disease itself is not fatal. Learn more and share with others.
How can we better fundraise to support a cure for Parkinson’s.
That takes an aggregate of millions of dollars to cure this problem. The majority of the funds are raised annually by the largest institutions. The Michael J Fox Foundation, the Phinney Foundation, The National Parkinson’s Disease Association, the American Parkinson’s Disease Foundation, and more. Take it from me; it’s easiest to go out and support the existing walks, galas, products you can buy, and other programs in place. The sale of my book will be the primary tool for my fundraising for additional surgical teams. If you have a minute, go to INKFORPD.com and get yourself my wearable-art-for-a-cause.
What other activities do you undertake to help improve and support your daily living, Eg, exercise and alternative remedies?
I am an amateur cyclist. You can catch me riding the neighborhood on my 10-speed Italian Specialized racer. For 2025, I am taking advantage of my Silver Sneakers benefit featured on my Medicare Advantage plan (for free – if you have Medicare Part C, check your policy for this). This month I hired a trainer to help me recover my balance once again. It’s coming along nicely. Exercise is key to living a long and COMFORTABLE life. PD won’t kill you. If you don’t stay fit, you could be looking at falling apart slowly and incapacitating yourself unnecessarily. Stay fit, and you’ll be independent a lot longer.
Why should people who don’t have Parkinson’s care about this?
My pinkie finger started tremoring on January 15, 2009. On January 14, 2009, I had no idea my life was going to explode the next day. The message is clear. PD and other diseases are random. Even if you don’t have the DNA marker, like me, it could come because of being sprayed with DDT from a mosquito truck on accident. Like me.
Have you had any family members or relatives affected by Parkinson’s disease?
Not that we are aware of. My sister died on Memorial Day 1993 after 10 months with glioblastoma, brain cancer at age 27. My mother has essential tremors.
If you had one song that would tell us more about you or represent your life, which song would it be?
Amazing Grace by Alan Jackson
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Be resilient. Be kind to yourself and others. Give thanks every day. Never give up and never give in. Never. Ever. No matter what.
Oh, and you know what? Dr. Sengun was right. It took about 2 years, but I did finally get “used to it.” I hate it when he’s right.