My PD Story

Peggy Faber holding a baby crocodile after a race
People with PD

Peggy Faber

Dream. Believe. Achieve. Succeed. This is my mantra. I have these words mounted above a window in my home. I live by these words, even more so now, since I have been diagnosed with Parkinson’s disease (PD).

I am someone who dreams big, sets goals, puts a plan in place to achieve those goals and then works her tail off to ensure those dreams come true! With Parkinson’s, I’ve had to become more flexible, adjusting and modifying my goals and making changes as necessary.

Being a runner/walker all my life naturally led to some lofty goals. One example is my dream to complete a marathon (yup, that’s 26.2 miles) in all 50 states. About halfway through my journey, after finishing the Oh Boy Marathon in Connecticut, I caught a red eye to Los Angeles.

I arrived just in time for a quick shower followed by an intense shareholders meeting — in which I played an essential role as Chief Financial Officer. Walking (more like staggering) to the hotel after that meeting I noticed a slight tremor in my left hand. It was easy to write it off as stress or exhaustion from the previous day’s events. 

A few more tremors, a couple of doctor visits later, and a DaTscan resulted in my PD diagnosis shortly thereafter. My goal to complete a marathon in 50 states did not change but I knew I would have to work harder to make it happen. 

I found that out during a race around mile 20 when my gait and balance started to suffer. Other concerned racers asked if I needed help or medical attention. I thanked them for their concern and said, “This is what Parkinson’s looks like; help us find a cure.”

Peggy Faber with her race medals

I made a shirt that says, “50 States Countdown Fighting Parkinson’s 1 mile at a time.” Now, when I wear it, people come up to me and say, “You’re such an Inspiration” or “I can’t believe you’re doing this” or “My Dad/Aunt/Brother/Friend…has PD, can I tell them your story?”

One of the reasons I joined Parkinson’s Champions is to team up with other athletes with PD and be part of a louder voice in raising awareness and advancements in the dream to end Parkinson’s.

For the past six years I’ve been doing everything I can to fight off Parkinson’s. In addition to putting in the long training miles needed for the marathons, I’ve added cycling classes, lap swimming, and line dancing to my exercise regime.  

Through the Parkinson’s Foundation I’ve found a Rock Steady Boxing gym, ping pong tournaments and the annual Sole Support Walk that I participate in. My physical therapist uses the tag line “Exercise is Medicine” and we both believe that my rigorous workouts have helped me keep my Parkinson’s symptoms at bay.

Now I can say I am fully living my mantra Dream. Believe. Achieve. Succeed. I never lost sight of the dream! I firmly believed I could complete 50 marathons in 50 states. I achieved my goal, and on September 22, 2024, I succeeded in completing the Adirondack Marathon in NY with family, friends and a few hundred cheering fans to help me celebrate.

But the dream does not stop here. I will continue to fight Parkinson’s with everything in me, while doing my best to encourage and inspire others to do the same.

Support Peggy's Parkinson’s Champion event to complete her 50th Marathon or learn more about becoming a Parkinson’s Champion.

 

Tips for Daily Living

Extreme Weather Emergency Preparedness

Extreme weather

Preparing for extreme weather is a burden for anyone in the path of a storm or fire. People with Parkinson’s disease (PD) and their caregivers should take these tips into consideration to ensure that all PD-related needs are accounted for when preparing for a hurricane or any other natural disaster:

  • Check all your medications. Take inventory of all medications and reorder any that are running low. 
  • Write your medication list down. Write down or print a list of all your medications (not just PD medications). Include medication name, strength, times taken and dosages. This customizable medication schedule can help.
  • Make a list of your doctors. Make a list of your doctors and their contact information and take it with you if you need to evacuate before a storm.
  • Water and food preparedness. Medications may need to be taken with a meal and usually water. Calculate five gallons of water per person per day. Buy enough water and food to last three to five days.
  • Order or print your Hospital Safety Guide in the event you need to educate an emergency responder or health care professional about your PD needs. Order one here.
  • Have your Medical Alert Card handy. Keep it with you at all times. Print one here.
  • Check in with your support network before and after. Arrange for at least one friend or family member to call you during a weather emergency, especially if you live alone.
  • Practice anxiety reduction techniques. The stress of possibly losing power or being evacuated could make anyone anxious, but stress can worsen PD symptoms. Download a meditation or breathing app or try to distract yourself by reading a book.
  • Know your nearest shelter. Visit the Red Cross website to find yours. Depending on where you live and your PD symptoms, you may qualify for a Medical Special Needs Shelter where you can get additional assistance with basic tasks. 

Preparing for power loss:

  • Avoid overheating. If you lose air conditioning, monitor your body heat. Drink more than the recommended nine to 13 cups of water per day. Exercise in the early morning or late afternoon when cooler outside. Know the signs of heat stroke: flushed face, high body temperature, headache, nausea, rapid pulse, dizziness and confusion. If heatstroke is suspected, go to your nearest emergency room or urgent care for treatment.
  • Address lightheadedness. Many people with Parkinson’s experience Neurogenic Orthostatic hypotension (nOH), characterized by a drop in blood pressure when going from a seated position or lying down to standing. Exposure to heat can make nOH worse. If you regularly or occasionally experience lightheadedness or dizziness when you stand up, take extra precaution if you lose power and air conditioning by staying hydrated and standing up slowly. 
  • Prepare your devices. If you have a deep brain stimulator (DBS), make sure your patient controller is charged. If you use a DUOPA pump, plan ahead to keep your DUOPA cassettes refrigerated. Call your doctor to ask if you should have extra oral medication on hand in case you are unable to use your pump at any point. 

Preparing for an evacuation:

  • Write and follow a packing list. Make sure to include all medications, water and snacks.
  • Know your community response plan. Learn about your area’s response and evacuation plans before a storm hits. Find your state’s emergency management agency here.
  • Take all your medications in their bottles with you. Try to keep them all in one travel bag.
  • Take your walker, cane or wheelchair, even if you only use it occasionally.  
  • Consider your devices. If you have a deep brain stimulator, remember to bring your patient controller. If your DBS neurostimulator is rechargeable, be sure that your recharger is fully charged and bring it along with the charging dock.

 

Download or order a Hospital Safety Guide today. Looking for more information about preparing for extreme weather with Parkinson's? Call our Helpline at 1-800-4PD-INFO (1-800-473-4636). 

Raise Awareness

8 Practical Ways to Work on Your Mental Health with Parkinson’s

Woman meditating in her livingroom

For people with Parkinson’s disease (PD) and care partners, dedicating time to maintaining mental health can feel like its own battle. From the mental exhaustion leading up to a Parkinson’s diagnosis to what can feel like ever-changing symptoms as PD progresses, it’s easy for mental health to not be a priority.

Below we explore eight practical ways to work on your mental health. Most of these can be applied to people with PD and care partners, as both are constantly navigating the complexities of mental health symptoms alongside the physical ones.

Jump to Our Top 7 Mental Health Resources

1.  Get to know the science behind the psychological impact of Parkinson's.

 

2 out of 5 people with PD experience an anxiety disorder

Depression, anxiety and apathy are all common Parkinson’s symptoms. In fact, up to 50% of people with Parkinson’s will experience some form of depression. Our research shows that together, depression and anxiety have the greatest impact on the health of people with PD, even more than the movement challenges.

The science behind mood symptoms is that Parkinson’s directly impacts the production of dopamine in the brain. Dopamine plays an essential role in helping the body move smoothly and the brain process emotions.

What can you do? Get to know non-movement symptoms. Learn the signs of depression. Bring up any mood-related symptoms to your Parkinson’s doctor. Together, you can find treatment options that work for you.

Resource that can help: Mood: A Mind Guide to Parkinson's Disease

2.  Exercise.

Research shows that exercise and physical activity can not only maintain and improve mobility, flexibility and balance but also ease non-movement PD symptoms. Exercise releases chemicals in the brain such as neurotransmitters and endorphins that make us feel good. It reduces immune system chemicals that can worsen depression, and it increases body temperature, which may have a calming effect.

PD-tailored exercises classes, from non-contact boxing to indoor cycling, are excellent forms of exercise and have the bonus of helping build your PD support system.

Increasing physical activity alone was shown in some studies to improve mood. Walking, gardening, housework, washing the car — any activity that gets you moving can help improve your mood. Even adding small amounts of physical activity throughout your day can be useful.

Resource that can help: Try an on-demand exercise class through our Fitness Friday videos, or call our Helpline at 1-800-4PD-INFO (1-800-473-4636) to find a PD-tailored exercise class near you. 

3.  Try complementary therapies.

Explore holistic approaches that can support mental wellness in addition to your treatment plan. About 40% of people with Parkinson’s use some type of complementary therapy as part of their regular treatment routine.

Complementary therapies include:

  • Exercises, like Tai Chi and Yoga
  • Vitamins and Supplements
  • Acupuncture
  • Meditation
  • Massage Therapy
  • Medical Marijuana

Talk to your primary care doctor before starting any complementary therapy. 

Resource that can help: Top Takeaways About Complementary Therapies and PD

4.  Change your diet.

Eating a whole food, plant-based diet, often called the Mediterranean diet, can help you live well with PD. Eat what you need to be happy — but also eat more of the food that is good for your health.

If you have Parkinson’s, every healthy lifestyle change can help. While it can be challenging to eat better, most people make minor diet changes gradually that become major changes over time. Always consult your physician before making major changes.

Resource that can help: Diet & Nutrition page

5.  Attend an in-person event and try a new resource.

For everyone, finding the tools that help you cope with stress and anxiety can be a lifelong endeavor. Explore Parkinson’s Foundation resources that can help you get the support you need.

These tools are designed to help empower you:  

Resource that can help: Resources & Support page

6.  For care partners: check in with yourself.

How can I support my loved one with Parkinson’s through mental health changes? How can I support my own mental health? As a caregiver, you have a dual role — taking care of the person with Parkinson’s and taking care of yourself. These roles are equally important! A strong personal support network will help you have an outlet for your emotions and be able to take time off. Call our Helpline at 1-800-4PD-INFO (1-800-473-4636) to find a local caregiver support group.

Regularly check in with yourself. Seek help professionally or from a trusted friend as you need it. Remember to take breaks — utilize people in your life, or external resources, to allow you respite from caregiving.

Resource that can help: Caring for the Care Partner

7.  For everyone: Build your mental health support team.

Recognizing your individual emotional needs and building a strong support network that includes mental health professionals is part of a comprehensive plan to navigate PD.

Surround yourself with people who will listen, uplift and encourage you when you need them. Look for support among your friends, family and community. Take the time to find the right therapist. It may be difficult to find one 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.

Resource that can help: Tips for Daily Living: Building Your Mental Health Team

8.  For everyone: Call our Helpline for personalized resources and tools.

Our Helpline is here to answer your Parkinson’s questions. Speak to our Helpline specialists to find resources that work best for you or your loved one with Parkinson’s. Regarding mental health, our Helpline can provide referrals to:

  • Healthcare professionals.
  • Community resources including exercise classes and local support groups.
  • Mental health resources.

Resource that can help: Call 1-800-4PD-INFO (1-800-473-4636) or email Helpline@Parkinson.org.

Our Top 7 Mental Health Resources

  1. Expert Briefing: Mental Health and PD
  2. Mindfulness Mondays: Take part in guided relaxation techniques to help boost brain power and reduce stress. Explore recorded events.
  3. Tips for Daily Living: Building Your Mental Health Team
  4. Episode 118: Managing Mental Health Problems with Parkinson’s
  5. How to Advocate for Your Mental Health with Parkinson’s
  6. For Care Partners: Answering the Top Care Partner Questions About Mental Health
  7. For Care Partners: Caring for the Care Partner
Raise Awareness

From Passion to Action: 4 Volunteers Making a Difference

Every day at we are grateful for the wonderful volunteers, known as Parkinson’s Foundation Ambassadors, who help make a difference in the lives of people with Parkinson’s disease (PD).

National Volunteer Week is April 17 to 23, and we want to celebrate and thank all the hard-working volunteers across the globe who spread awareness and improve their PD communities.

There are many ways to get involved and start volunteering, from Moving Day to joining our People with Parkinson’s Advisory Council. Finding the opportunity that fits your abilities and passion is key. Below are four volunteers who did just that, and who are excited to share their stories with you in the hopes that you might also find the volunteer role that works for you!

Rebecca

Rebecca LeClair on stage at Moving Day Walk

Volunteer, Brother is living with Parkinson’s 

Selfishness is normally considered a negative characteristic, but in this case, I’m proud to be a selfish volunteer for the Parkinson’s Foundation. Luckily, everything I do for the Foundation helps Greg, and vicariously helps others too! I think that’s pretty positive.

Read Rebecca’s story
 

Mike & Angela

Angela and Michael Bowman

Parkinson’s Research Advocates, Mike is Living with Parkinson’s and Angela is his care partner

Back in the day, it was uncommon for older people, especially African Americans, to seek medical attention for physical and mental needs. Now, as a Research Advocate, I can ask questions and help raise awareness for PD. I use this role to spread information about the importance of clinical research and genetic testing.

Read Mike and Angela’s story
 

Darrell

Darrell Allers headshot

Volunteer, Living with Parkinson’s

There are many volunteer roles in the Parkinson’s Foundation and my interest settled on giving presentations in the community. First, I needed to complete the Ambassador training which was very helpful and increased my PD knowledge. My motivation to pass the training quickly became my reality and I became a Parkinson’s Foundation Ambassador for the Georgia Chapter.

Read Darrell’s story
 

Whether you are interested in becoming a Parkinson’s Foundation Ambassador like Darrell, a research advocate like Mike & Angela, or speaking to people in your community like Rebecca, we want to hear from you! Get to know more of our volunteers through this special volunteer edition podcast episode.

Complete our volunteer interest form to get started. You can also chat with the volunteer engagement team to help us educate others about PD and connect them to life-saving resources.

Already a volunteer? Check out our course offerings today! 

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

Podcasts

Episode 164: Reintroducing Our Podcast Moderator

As we start the new year, we wanted to turn the tables on our podcast host and moderator, Dan Keller. Dan has hosted our Substantial Matters podcast series since it began more than five years ago. In this episode, we share some insight into his background, his experience, and how he came to host this series, starting as a laboratory researcher, to journalism student, to medical journalist and broadcaster. He talks about the rewards of reaching the Parkinson’s community through podcasts, and shares his suggestions for new, as well as seasoned, listeners.

We invite our listeners to share your feedback by visiting Parkinson.org/Feedback. We want to hear your thoughts so we may continue to improve our podcasts and explore topics that are relevant to you.

Released: January 9, 2024

Videos & Webinars

Expert Briefing: Hallucinations and Delusions in Parkinson's

November 8, 2023

Psychosis can be a frightening word. In Parkinson’s disease, the medical definition of psychosis usually starts with mild symptoms that can have a big impact on quality of life. Psychosis can vary from severe confusion to seeing things that aren’t there, to believing things that are not true. Find out what causes these symptoms, how people with Parkinson’s might experience them and management strategies.

Download Slides

Presenter

Megan E. Gomez, PhD
Staff Psychologist, Tibor Rubin VA Medical Center

Videos & Webinars

Veterans and PD: Managing Anxiety, Depression, and Apathy

August 31, 2023

For veteran’s living with Parkinson’s disease, non-motor challenges are not always easy to discuss. With a focus on mood changes, including anxiety, depression, and apathy, this program will provide strategies for coping and talking about it with healthcare providers or loved ones.

Download Slides - Part 1

Download Slides - Part 2

Additional Resources

Podcasts

Episodio 27: Los efectos del Parkinson sobre el sueño

Existen diversas causas de los problemas del sueño que pueden experimentar las personas con Parkinson. Entre los trastornos del sueño más comunes están la apnea del sueño (asociada normalmente a un ronquido fuerte), el insomnio y el trastorno donde las personas actúan los sueños mientras duermen.

También sabemos que los problemas emocionales, que son síntomas no motores del Parkinson, pueden estar ligados a los problemas del sueño. Por ejemplo, si uno tiene depresión o ansiedad, puede llevarlo a dormir mal en general. 

En este episodio de podcast, escuchamos al doctor Alberto Ramos, profesor de neurología clínica y director de investigación del Programa de Trastornos del Sueño en la University of Miami Miller School of Medicine acerca de los efectos del Parkinson sobre el sueño. El doctor Ramos comparte formas de mejorar el sueño, tratamientos que existen para estos problemas y consejos para las personas con la EP que están experimentando estos problemas, así como para las parejas que experimentan interrupciones debido a estos trastornos del sueño. 

Publicado: 1 de agosto de 2023

My PD Story

Charlotte_Juarez
People with PD

Charlotte Juarez

I was diagnosed with Parkinson's disease (PD) in March 2021. I do my best to stay healthy and positive, while encouraging others in the PD community to do the same. I applied to be a Parkinson's Foundation Ambassador because I'm passionate about sharing information and helping others on this journey. I am also currently the Virginia Ambassador with the Davis Phinney Foundation, and I was recently invited to be an ambassador with the PMD Alliance.

I have a YouTube channel where I share my efforts for living well with PD, including exercise and motivational videos. I hope my videos inspire other people in the Parkinson’s community to keep moving and stay positive! I pledge to donate 50% of the channel's revenue to Parkinson's research.

In April of this year, I started my polymer clay jewelry business. I donate 50% of my jewelry sales to Parkinson's research as well. I'm excited to continue raising awareness for PD with this new venture! As of July, I've been able to donate over $800 help this cause.

I have been married 31 years. My husband and I have two sons, who are both married, and one grandson. My family is my greatest blessing and I'm grateful for their love and support with all my activities in the Parkinson's community. Our grandson turned three this year and has become aware of my tremor, so I published a children's book called "Grammy Has Parkinson's." I hope this book helps alleviate some of the mystery and concern children may have regarding family members dealing with this disease. I plan to also donate 50% of book sales to Parkinson's research. I still work full-time and aside from my activities in the PD community, I love spending time with family, hiking in our national parks, doing jigsaw puzzles and crafting. I'm proud to be a part of the Parkinson's community and know I'm in the company of brave, resilient warriors!

Get involved in the PD community by raising awareness and funds. Create your own fundraiser today!

Podcasts

Episode 154: Sexuality from the Care Partner Perspective

Intimacy is a significant part of any relationship, and sexuality is an important aspect of intimacy. Parkinson’s disease (PD) can present challenges for both intimacy and sexuality, both for the person with PD and for the care partner. The Parkinson’s Foundation Helpline can be a good resource for coping with these issues. In this episode, Anna Moreno, MSW, a Senior Parkinson’s Information Specialist at the Parkinson’s Foundation, highlights some of the more common questions that care partners pose about sexuality to the Helpline. 

Although she herself is not a therapist, she can direct callers to appropriate resources. Gila Bronner, MPH, MSW is a Certified Sex Therapist and Supervisor of the Sex Therapy Services at the Tel-Aviv Sourasky Medical Center in Israel. In this episode, she provides insight into these typical problems that care partners report, and she offers some recommendations to help overcome them. For many years, she has researched and provided therapy and advice about intimacy and sexuality relating to PD in Israel and around the world.

Released: July 11, 2023

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