My PD Story

Lisa Bisogni dancing
People with PD

Lisa Bisogni

When I was diagnosed with Parkinson's disease (PD) in the fall of 2019, I was devastated. As an occupational therapist for over 30 years, I knew how debilitating Parkinson's could be and how the trajectory of my life would be changed forever. However, once I came to terms with my PD diagnosis, I vowed to do everything in my power to slow the progression of this disease.

As someone who enjoys information gathering, I set upon learning as much as I could about Parkinson’s. I scoured the Parkinson's Foundation website for information about being newly diagnosed and viewed countless webinar recordings on subjects such as nutrition and diet, exercise, medication and research. I also enjoyed reading the stories of other people living with PD and getting inspiration from their experiences.

After learning more about PD, my routine included regular check-ins with my neurologist at NYU Langone Medical Center, a Parkinson’s Foundation Center of Excellence, as well as managing my symptoms with medication. In addition, I embarked upon an exercise regimen 4 to 6 days per week which included strength training, kickboxing, Pilates and yoga.

However, when my husband and I decided to take dance lessons to prepare for our son's wedding, I wasn’t sure if Parkinson’s would interfere. Would the dystonia in my feet slow me down? Would my decreased balance interfere with my ability to negotiate turns? Would my fear of falling affect my ability to move? Would my bradykinesia interfere with the fluidity of my movements? However, with the support of our very talented and patient instructor along with the rest of the team at the Fred Astaire Dance Studio in Marlboro, New Jersey, I was able to dance the night away at our son’s wedding.

One year after we started our dance journey, my husband Nick and I danced a spotlight foxtrot at our studio's monthly dance party. It was terrifying... and exhilarating! I had done it! Despite my fears and lack of confidence in my ability as a person with Parkinson’s disease, I had performed a (mostly) fluid and graceful foxtrot in front of a room full of dancers with my husband. The video of us dancing received over 15,000 views on social media!

My husband and I have recently set a new goal of dancing a spotlight tango and learning to salsa. I hope to continue to dance for many years and to inspire other people living with PD not to let their fears hold them back!

Listen to our podcast on dance therapy and Parkinson’s.

My PD Story

Bill McCleery holding basketball
People with PD

Bill McCleery

Parkinson’s disease (PD) has made me a better basketball player — and a better bicyclist, birdwatcher and bowler. I know that sounds counterintuitive. With a degenerative brain disease, after all, things worsen over time. Right? In the long run, perhaps so.

In the years preceding my diagnosis, however, the churning currents of daily responsibilities — mainly job-related — carried me away from healthful activities that I enjoyed in my younger years.

Then came 2020 — the year I stopped walking right.

I was 49.

Looking back, I now recognize that the first signs of Parkinson’s disease popped up years before that — increased anxiety, attention deficits, fatigue, muscle rigidity and shoulder stiffness. But it was the sudden onset of persistent cramping in my left foot that figuratively (and literally) threw me off my stride. The cramps progressed to a constant limp that dogged me even when no cramps were present. I began bicycling for exercise rather than my usual walking or running — because bicycling did not trigger the cramps.

I finally saw a neurologist. After months of uncertainty, I received my Parkinson’s diagnosis in February 2022. Directly upon diagnosis, my neurologist at Indiana University Health, part of the Parkinson’s Foundation Global Care Network, provided me with educational books published by the Parkinson's Foundation.

Upon learning more about my symptoms, I found out the foot cramps were Parkinson’s-induced dystonia. To my great relief, a regimen of carbidopa-levodopa dramatically reduced the dystonia and the limp. I began enjoying walking again — with a new appreciation for being able to do so. Across a spectrum of activities, my PD diagnosis brought me back to doing things that promote better mental and physical health.

Support of family and friends is paramount. My wife, Amy, has been a constant partner at every step. Together, motivated by a mutual desire to stay active, we have spent more time doing things we love like hiking, birdwatching and bowling. Likewise, I have valued the encouragement of my three daughters — along with my parents, in-laws, friends and co-workers. I’ve also appreciated interacting on Facebook and Twitter with others facing Parkinson’s disease.

Basketball has become my primary therapy. I play 4-on-4 half-court hoops two nights a week. When I’m on the basketball court, I don’t think about my symptoms.

After playing infrequently during my 40s, I now enjoy trying to improve my skills each week. My outside shot — such as it was, anyway — has largely survived. But when I drive to the basket, I miss layups time after time. So, my current goal — besides passing the ball better — is to actually score the bucket after getting past defenders on the way to the hoop.

Exercise is so enormously beneficial for Parkinson’s disease. Conversely, the worst thing for PD, in my experience, is spending long periods sitting at a desk or otherwise being sedentary. After years as a news journalist, I have now worked in state government since 2014. My job requires hours at a computer keyboard, but I do my best to get up and be active in the midst of workdays.

As I now deal with some dyskinesias and other symptoms, I realize that Parkinson’s is a tough opponent. But we can keep scoring points, nonetheless.

Learn more strategies for staying active with Parkinson’s. Download our Fitness Counts book.

Educational Events

Mind, Mood & Motion

3:00 pm to 6:00 pm EST
FREE
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Check-in and exhibitor tables open at 2 p.m. ET

Parkinson’s disease effects multiple aspects of a person’s life. Join us and learn about some of the cognitive, emotional, and movement symptoms that can come with Parkinson’s, hear from top researchers in the state about advancements in treatments and care, and get connected with local wellness classes and support groups so that you can live your best life with Parkinson’s.

There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends and the community.


Expert Speakers:

Mitesh Lotia, MD
Movement Disorder Neurologist, AdventHealth Neuroscience Institute

Dawn Bowers, PhD, ABPP/CN
Neuropsychologist, UF Departments of Neurology and Clinical & Health Psychology
UF Research Foundation Professor, the Director of the Cognitive Neuroscience Laboratory
Norman Fixel Institute for Neurological Diseases, a Parkinson's Foundation Center of Excellence


Expert Panelists:

Moderator: Joanne August, MSN, BSN
OPS Research Scholar 
UF Departments of Neurology & Movement Disorder 

Laura Patrick, PT, DPT
Clinical Neuro Program Manager, AdventHealth

Mia Watler, MSW
Brain Health Clinical Social Worker, AdventHealth

Tammy Dunseath
Genesis Health Clubs Brownwood

Gary Canner, Parkinson's Foundation Ambassador & Person with Parkinson's
Joan Canner, Gary's Spouse and Care Partner


 

Thank you to our sponsor:

COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.

Upcoming Events

Educational Events

Managing Changing Symptoms

After many years of good symptom management, Parkinson's disease may become more challenging. Learn how Parkinson's symptoms may change over time and new strategies available to manage them.

Commack, NY
Raise Awareness

Tips for Daily Living: Building Your Mental Health Team

Couple sitting with a counselor

Addressing movement symptoms in Parkinson’s disease (PD) is often the first step to improving daily life and overall well-being. Attending to mental health is equally as important for quality of life, especially given that stress and anxiety can worsen PD movement symptoms.

Findings from our Parkinson’s Outcomes Project, the largest clinical study on PD, uncovered that mood symptoms, such as depression and anxiety, can have a greater impact on the health of people with Parkinson’s than movement issues.

Parkinson’s mood symptoms are often intertwined with everyday life challenges and the emotions of coping with a PD diagnosis. Whether or not you are experiencing depression and anxiety, recognizing your individual emotional needs, and building a strong support network that includes mental health professionals, is part of a comprehensive plan to live well with PD.

This article accompanies our virtual round-table conversation, Building Your PD Mental Health Team, which is part of our Mental Wellness Series. In this article, we highlight tips that can help you build a support team for your unique mental health needs.

  • Reflect on your unique emotional journey.
    Take time to acknowledge the wide range of emotions that can come with PD — from sadness, grief and anger to relief, gratitude and hope — sometimes all at the same time!

    As your emotional needs change throughout your PD journey, so will the people and tools you rely on. Make a list of your mental health goals and concerns. Explore new and different types of support. Reaching out for help can seem scary and overwhelming but it is often an important step to getting the support you need to feel better.

  • Foster positive connections.
    Surround yourself with people who will listen, uplift and encourage you when you need them. Look for support among your friends, family and community.

    Creating connections with others on a similar journey can remind us we are part of a larger, resilient community and keep us moving forward. PD Conversations is an online discussion group where you can discover a network of support. Ask your healthcare team or the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) about local support groups and explore events offered by your nearest Parkinson’s Foundation chapter.

  • Rely on professional therapy.
    Psychologists, professional counselors, clinical social workers, marriage and family therapists are trained mental health providers who can offer strategies to ease stress and build coping skills. For example, a therapist trained in cognitive behavioral therapy can help you develop tools to change behaviors and thoughts that impact your emotional health.

    Keep in mind that therapists are trained to listen and provide nonjudgmental feedback that both the people living with PD and care partners can benefit from.

Does your anxiety and depression last longer than a few weeks or impact your daily life?

Anxiety and depression are treatable. Talk to your healthcare providers to find the treatment option that works best for you. Call our Helpline for referrals at 1-800-4PD-INFO (1-800-473-4636).

  • Find the right therapist.
    Mental health providers can be in short supply depending on where you live or what type of insurance you have. Be persistent and consider virtual sessions if you are unable to find a therapist in your area.

    It may be difficult to find a therapist who is familiar with PD, but those who are specialized in chronic illness, grief, anxiety and depression can often address common feelings and experiences of living with a PD diagnosis

    Look for a therapist who inspires feelings of comfort and confidence. Don’t be afraid to consider a different therapist if the relationship or chemistry doesn’t work for you. Your doctor, healthcare team, support group, friends or family may be able to offer referrals. The Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) can also provide information on therapy professionals in your community.

  • Consider medication for mood.
    Sometimes people with PD need medications to improve depression, anxiety and other mental health challenges just as they do for the treatment of movement symptoms. Neurologists, psychiatrists, psychiatric nurse practitioners or physician assistants are among the medical providers who can help find the right mood medication for you.

    An individualized approach that includes a combination of the right medications, counseling, exercise and social support has been found to be the best approach to supporting mental health.

Learn more about Parkinson’s Medications

  • Make necessary lifestyle modifications.
    Exercise is medicine for PD. Not only is movement vital to managing movement symptoms (such as balance, strength and mobility) and overall disease progression, research has found that increasing physical activity and creating a regular exercise plan can improve depression and anxiety.

    Additionally, regular social engagement, relaxation time and non-PD-related activities help promote a healthy balance.

Fundraising Events

Community Walk Punta Gorda

7:30 am to 12:30 pm EST
Free
Group of people going through the finish line at a Moving Day Walk

Get out and move with your community! Every dollar raised supports the Parkinson’s Foundation mission to make life better for people affected by Parkinson’s disease (PD). At Moving Day Community Walks across the country, we’re fighting Parkinson’s and celebrating movement — proven to help manage Parkinson’s symptoms — and we’re doing it together. The Moving Day Community Walk Program is a complement to the Parkinson’s Foundation Moving Day, A Walk for Parkinson’s. These walks are family-friendly and help the Foundation make life better for people with PD.

The Community Walk program offers volunteers an opportunity to organize a walk in their own community that does not have a Moving Day event. The program leverages the personal experiences and community leadership of passionate volunteers to promote Parkinson’s awareness and raise funds for the Parkinson’s Foundation.

Learn more about bringing an event to your area

Upcoming Events

Educational Events

Managing Changing Symptoms

After many years of good symptom management, Parkinson's disease may become more challenging. Learn how Parkinson's symptoms may change over time and new strategies available to manage them.

Commack, NY
Fundraising Events

Community Walk Danville

9:00 am to 12:00 pm EST
Free
Group of people going through the finish line at a Moving Day Walk

Get out and move with your community! Every dollar raised supports the Parkinson’s Foundation mission to make life better for people affected by Parkinson’s disease (PD). At Moving Day Community Walks across the country, we’re fighting Parkinson’s and celebrating movement — proven to help manage Parkinson’s symptoms — and we’re doing it together. The Moving Day Community Walk Program is a complement to the Parkinson’s Foundation Moving Day, A Walk for Parkinson’s. These walks are family-friendly and help the Foundation make life better for people with PD.

The Community Walk program offers volunteers an opportunity to organize a walk in their own community that does not have a Moving Day event. The program leverages the personal experiences and community leadership of passionate volunteers to promote Parkinson’s awareness and raise funds for the Parkinson’s Foundation.

Learn more about bringing an event to your area

Upcoming Events

Educational Events

Managing Changing Symptoms

After many years of good symptom management, Parkinson's disease may become more challenging. Learn how Parkinson's symptoms may change over time and new strategies available to manage them.

Commack, NY
Fundraising Events

Moving Day Miami

9:00 am to 12:00 pm EST
Free
Moving Day DC

Moving Day is an inspiring and empowering annual fundraising walk event that unites people around the country living with Parkinson’s disease (PD), their care partners and loved ones to help beat PD. Moving Day is more than just a walk. It’s a celebration of movement – proven to help manage Parkinson’s symptoms.

Leading up to the event, participants and teams fundraise to help the Parkinson’s Foundation provide vital resources and deliver quality care to more than 364,000 people living with Parkinson’s and other movement disorders, while improving Parkinson’s treatments through research.

Moving Day proceeds help bring quality care to more people with Parkinson’s, further Parkinson’s research, education and outreach initiatives. Moving Day raises awareness of Parkinson’s both nationally and in the local community.

 

Upcoming Events

Educational Events

Managing Changing Symptoms

After many years of good symptom management, Parkinson's disease may become more challenging. Learn how Parkinson's symptoms may change over time and new strategies available to manage them.

Commack, NY
Fundraising Events

Moving Day Tucson

9:00 am to 12:00 pm MDT
Free
Moving Day DC

Moving Day is an inspiring and empowering annual fundraising walk event that unites people around the country living with Parkinson’s disease (PD), their care partners and loved ones to help beat PD. Moving Day is more than just a walk. It’s a celebration of movement – proven to help manage Parkinson’s symptoms.

Leading up to the event, participants and teams fundraise to help the Parkinson’s Foundation provide vital resources and deliver quality care to more than 364,000 people living with Parkinson’s and other movement disorders, while improving Parkinson’s treatments through research.

Moving Day proceeds help bring quality care to more people with Parkinson’s, further Parkinson’s research, education and outreach initiatives. Moving Day raises awareness of Parkinson’s both nationally and in the local community.

 

Upcoming Events

Educational Events

Managing Changing Symptoms

After many years of good symptom management, Parkinson's disease may become more challenging. Learn how Parkinson's symptoms may change over time and new strategies available to manage them.

Commack, NY
Fundraising Events

Moving Day NC Triangle

10:00 am to 1:00 pm EST
Free
Moving Day DC

Moving Day is an inspiring and empowering annual fundraising walk event that unites people around the country living with Parkinson’s disease (PD), their care partners and loved ones to help beat PD. Moving Day is more than just a walk. It’s a celebration of movement – proven to help manage Parkinson’s symptoms.

Leading up to the event, participants and teams fundraise to help the Parkinson’s Foundation provide vital resources and deliver quality care to more than 364,000 people living with Parkinson’s and other movement disorders, while improving Parkinson’s treatments through research.

Moving Day proceeds help bring quality care to more people with Parkinson’s, further Parkinson’s research, education and outreach initiatives. Moving Day raises awareness of Parkinson’s both nationally and in the local community.

Upcoming Events

Educational Events

Managing Changing Symptoms

After many years of good symptom management, Parkinson's disease may become more challenging. Learn how Parkinson's symptoms may change over time and new strategies available to manage them.

Commack, NY
Raise Awareness

How Our Volunteers Are Making an Impact

April 17 to 23 marks National Volunteer Week! All year round, we rely on the passion and energy of volunteers serving as Parkinson’s Foundation Ambassadors, to make a difference in the lives of people with Parkinson’s disease (PD) every day. Thank you from the bottom of our hearts for everything you do in your community to spread awareness and make life better for people with Parkinson’s today.

Meet three amazing volunteers and read their inspiring stories that celebrate their contributions to the PD community.

Mark Kelm

People with Parkinson’s Advisory Council Vice Chair
Minnesota and Dakotas Chapter

Mark Kelm at Twins game

Living with young-onset Parkinson’s disease while raising three kids with my wife has offered a few unique challenges and a superabundance of blessings. Like so many others experience, my PD rigidity, tremors, and balance issues make daily life tasks more taxing for me. It can be easy to allow these symptoms to make me sit on the sidelines of life. I’m sure many others have felt the same way.

I have come to understand, however, that we were not made to sit on the bench. We were created to actively engage in this life, making an impact in our own small but significant way.

When my wife and I told our kids of my diagnosis, they were in ninth, seventh and third grade. Our oldest daughter jumped right in, volunteering with the Parkinson’s Foundation Minnesota and Dakotas Chapter. She inspired us to participate as a family in Moving Day Twin Cities. That day, we became more aware of other opportunities to connect and volunteer. By getting involved, we have found that volunteering connects us to others, is good for our minds and bodies, and has brought fun and fulfillment to our lives… keep reading.

READ MARK’S FULL STORY

Elva Brown

Moving Day San Antonio Team Captain 
South Central Chapter

Elva Brown

I do not do it alone. Like the saying goes, “There’s no I in team.” Going into my third year as team captain of “Team Sloth” for Moving Day San Antonio, I am very proud to volunteer with this energetic and passionate group to raise awareness of Parkinson’s. I may be the captain, but WE all do it all together. 

Parkinson’s disease (PD) is not always an easy conversation, especially for the other party. It was difficult for me as well at the very beginning. It took me four years to tell my family and friends that I, indeed had Parkinson’s. I just couldn’t say the words.

Eventually, I found and joined a support group. I learned that they were going to participate in a walk to raise funds for Parkinson’s. I thought to myself, “this is the time to tell my family and friends” … keep reading.  

READ ELVA’S FULL STORY

Dylan James

Chapter Board President
California Chapter

Dylan James and family

The impact my father’s Parkinson’s diagnosis had on my family was severe and palpable. I’m an only child, so it’s just my mom, dad and me. Shortly after Dad was told he had Parkinson’s in 2018, there was an aggressive narrowing of their independence in the span of about 90 days. My mom became the primary caregiver to my dad, and luckily, I only live about an hour away, so since I’m fairly close I can be there at almost a moment’s notice to help when needed.

It was hard on all of us — the uncertainty and unknowns related to my dad’s diagnosis, but also the change in the family dynamic.

I work in Nasdaq’s San Francisco, CA, office. About six months before my dad was diagnosed with PD, my boss at the time, Jeff Thomas, whose father also has PD, organized a company happy hour to support the Parkinson’s Foundation Moving Day San Francisco event. In that first year, as we all familiarized ourselves with Parkinson’s, Jeff became a great resource and comfort since he had lived through what I was experiencing. He encouraged me to check out the Foundation’s resources and helped me get involved in Moving Day. 

Getting involved with the Parkinson’s Foundation felt like a way to do something for my mom… keep reading.  

READ DYLAN’S FULL STORY

Learn more about how you can become a Parkinson’s Foundation Ambassador.

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