The Helping Harmony of Music and Parkinson’s

Guest Blog by Frank Antonicelli

For those living with Parkinson’s disease, simple acts of movement or expression can sometimes feel like climbing a mountain. Over the past 17 years, I’ve faced challenges that have tested me in every way possible, but one surprising ally has been music. Music is more than just a backdrop to life’s moments; for many of us with (and without) Parkinson’s, it’s a lifeline — a force that can help calm the mind, energize the body, and lift the spirit.

Physically, music has a unique ability to bridge some of the gaps where Parkinson’s creates disconnection. Rhythm, in particular, plays a powerful role. Scientists have discovered that rhythmic cues can help improve gait, balance, and coordination in people with Parkinson’s. When I listen to a song with a steady beat, it feels like my body finds a new rhythm of its own. What once felt stiff or slow begins to move more with a surprising fluidity. For some people with Parkinson’s, music therapy, dance therapy, drumming, playing the piano, or simply walking to the beat of a favorite tune has been shown to help unlock motion in ways traditional exercise often can’t.

I believe for me (and many others) music offers a mental haven, a place where Parkinson’s can’t reach in and take over. It is almost as if it taps into parts of the brain that remain untouched by the condition, sparking happiness and creativity. Speaking from my own experience, I’ve noticed situations where a familiar melody or an evocative lyric has had the power to transport me to another time and place, helping me to unburden my mind and give myself a much-needed attitude adjustment for the better.

One of the most rewarding aspects of my journey with Parkinson’s has been discovering the transformative power of music and reconnecting with my creative side. In my younger days, I poured my thoughts out on paper through lyrics and poetry, dreaming of becoming a songwriter. However, I lacked the confidence to pursue it fully. As life progressed and my professional career took off, I set those creative projects aside, (literally tucking them away in a drawer) and didn’t look back.

That all changed during a particularly rough patch with my Parkinson’s. Overwhelmed by my body’s struggles and medications that no longer seemed to be working, I turned to writing as a way to process and make sense of my situation. This rediscovery led me back to the poems and songs I had written long ago. Seeing them with fresh, yet tired eyes, I began to appreciate them in a new light and was inspired to start working on new material.

At that time, Parkinson’s felt like it was casting a heavy shadow of uncertainty over my future. I asked myself, “If now isn’t the time to do what I love, then when is?” With that, I decided to share my work with others, putting myself out there in a way I never had before. This decision led me to an incredible group of musicians with whom I felt an instant connection. Together, they’ve helped bring my songs to life and we formed our group, Animal Speak. Over the past few years, we’ve grown tighter as bandmates, as well as friends, and have released music we’re proud of.

Two of those tracks, “There 4 U” and “The Healer,” hold deep personal meaning for me. They were inspired by remarkable individuals who had entered my life, caretakers and healers, who impacted my Parkinson’s journey and my recovery from Deep Brain Stimulation (DBS) surgery. Their support, kindness, and strength got me through the toughest times of my life, and these songs are my tribute to their role in helping me move forward.

As a takeaway, this experience has taught me that the power of collective expression is undeniable. Music has an interesting way of uniting us and proves that even in the face of adversity, connection and art can help us find our way.

Within the broader Parkinson’s community, I’ve been very happy to see how music has become a cornerstone of wellness for many. Programs like group singing sessions or rhythmic movement classes are about more than therapy—they’re about connection, empowerment, and belonging. They remind us that we are not alone but part of something greater, a shared rhythm that binds us together.

While Parkinson’s has shaped my life in unexpected ways and taken many things from me, it has not taken away my voice or creativity. Through music, I’ve rediscovered a part of myself that I thought was lost forever, and I found an extra way to keep moving forward in a way that truly makes me happy.

Music is one of my essential tools for living fully, whether I’m listening, creating, or simply moving to its beat.

Canadian Parkinson's Advocate Larry Gifford honored with King Charles III Coronation Medal

Parkinson Canada, Parkinson Society British Columbia nominated the "When Life Gives You Parkinson's" podcaster and cofounder of PD Avengers for the award

VANCOUVER, BRITISH COLUMBIA, CANADA, November 29, 2024 /EINPresswire.com/ -- Larry Gifford, 52, a prominent Parkinson's advocate, broadcaster and podcaster based in Vancouver, B.C., has been awarded the King Charles III Coronation Medal. This prestigious honor recognizes his significant contributions to the Parkinson's community in Canada and worldwide. Diagnosed with Parkinson's disease in 2017, Gifford co-founded the Global Alliance to End Parkinson's (PD Avengers) and hosts several influential podcasts, including "When Life Gives You Parkinson's," "On Time" for the Brian Grant Foundation, and The Michael J. Fox Foundation's podcast. Through these platforms, he shares personal insights and fosters a global dialogue on the disease.

Parkinson Canada and Parkinson Society British Columbia jointly nominated Gifford for this honor. Dr. Karen Lee, President and CEO of Parkinson Canada, stated, "We put forth your name as we believe that you have truly made a positive impact on the Parkinson's community. Your openness about your own experiences and your incredible advocacy work have touched so many people affected by Parkinson's here in Canada and around the world.

Gifford expressed his gratitude, stating, "I am deeply honored to receive the King Charles III Coronation Medal. I'm beyond thrilled and deeply grateful to the Parkinson's community for their unwavering support. This recognition fuels my passion to continue our collective mission to end Parkinson's disease."

“We thank you sincerely for all you have done for the Parkinson’s community, and know that your generosity and passion have brought credit to Canada.”

— Joanne Baker, CEO Parkinson Society British Columbia

Gifford's leadership extends to serving on the Michael J. Fox Foundation Patient Council and the Editorial Board of the Journal of Parkinson’s Disease. He is a sought-after keynote speaker and panelist and was an invited participant at the World Health Organization's workshop addressing the public health importance of Parkinson’s disease.

In addition to his advocacy and podcasting, Gifford served as an Ambassador from Canada to the World Parkinson Congress in Barcelona, Spain, in 2023. His insights have been featured in books and documentaries, and he has co-authored articles in esteemed journals such as the Journal of Parkinson’s Disease and JAMA Neurology. Notably, he contributed to the article "Six Action Steps to Address Global Disparities in Parkinson Disease: A World Health Organization Priority," published online on July 11, 2022. He also co-authored "The Silver Linings of Parkinson’s Disease," featured in NPJ Parkinson’s Disease in 2022.

The King Charles III Coronation Medal was created to mark the Coronation of His Majesty King Charles III on May 6, 2023. It is the first Canadian commemorative medal to mark a coronation and is awarded to individuals who have made significant contributions to Canada, their province, territory, region, or community, or have attained outstanding achievements abroad that bring credit to Canada.

Gifford's unwavering commitment to raising awareness and advocating for those living with Parkinson's disease exemplifies the spirit of this award.

Karen Lee, CEO/President, Parkinson Canada, Larry Gifford, and Joanne Baker, CEO Parkinson Society BC. 

A Parkinson’s Christmas Story

By Larry Gifford; Adapted from A Visit from St. Nicholas (1823) by Clement Clark Moore

'Twas the night before Christmas, and all through the land,
Tremors were stirring; each movement unplanned.
Levodopa nestled, arranged with great care,
In hopes that relief soon would be there.

The community gathered, united and strong,
Sharing their stories, where all could belong.
Caregivers offered support and their love,
A reminder that strength doesn't just come from above.

The community gathered, united and strong,
Sharing their stories, where all could belong. 

When out in the world there arose such a sight,
Advocates marching, demanding their rights.
To lawmakers they scurried and turned on in a flash,
”End Parkinson’s Now!” They said fairly brash.

With unity guiding, their mission was clear,
To bring about hope as the new year draws near.
More rapid than eagles, their efforts they came,
And they whistled, and shouted, and called out by name:

"Now Funding! Now Research! Now Awareness and Action!
On Support! On Treatment! Where’s Satisfaction?”
To the town hall we go, and make such a clatter.
”Now dash away, dash away!” Everyone scatter.

The biomarker's near, yet remains out of sight,
Who volunteers for the spinal tap's plight?
Vyalev's infusion, beneath the skin's layer,
Offers new hope, a continuous player.

And then, in a twinkling, I heard on the street
The clomp-clomping and shuffling of Parkinson's feet.
As my arm didn’t swing and my balance was poor,
I soon ended up frozen and then dropped to the floor.

Officers hurried, conclusions they drew,
"Too much merriment," their suspicions grew.
"Please," I responded, "I'm not under the sway,
Parkinson's dulls my expressions this way."

My voice, barely audible, handwriting a chore,
A face that reveals my feelings no more.
Facing misconceptions, yet standing my ground,
Seeking understanding where empathy's found.

Santa's elves appeared, understanding the plight,
Shifting me from "off" to "on," setting things right.
"Medications on schedule," they told the police,
Ensuring my symptoms found timely release.

Hope filled the room as I moved with a twist,
Dyskinesia's dance, impossible to resist.
I tapped my fingers, toes wiggled in rows,
Elf doctor instructed, "Now, touch your nose."

And then, in a twinkling... PD Avengers appeared.
We knew in an instant a cure must be near.
They were dressed all in gear, from their heads to their feet,
Their commitment to action was truly a feat.

A bundle of hope they had flung on their backs,
And they looked like true heroes, just opening their packs.
With voices as one, they amplify the call,
To end Parkinson's disease, once and for all.

They sprang to their cause, to their team gave a whistle,
And away they all flew like the down of a thistle.
But I heard them exclaim, ere they drove out of sight,
"Happy Christmas to all, and to all a good night!"

17 Essential Care Partner Resources

Navigating the role of a care partner for someone with Parkinson's disease is both challenging and deeply rewarding. These resources, drawn from top Parkinson's organizations and expert foundations, offer essential insights, guidance, and practical support to help care partners at every stage of their journey. From tips for early-stage caregiving to advice on how to support loved ones through advanced challenges, these tools provide strategies to empower care partners, build resilience, and foster meaningful connections. Whether you're seeking day-to-day advice, ways to enhance your partnership, or specific caregiver resources, these pages offer a wealth of knowledge designed to support you and your loved one.

AARP Caregiving Homepage (AARP)

University of Michigan Care Partner Poll

I am a Carer (Parkinson’s Europe)

Care Partners Home Page (Michael J. Fox Foundation)

Care Partner Home Page (Parkinson’s Foundation)

Care Partner resources for early journey (Parkinson’s Foundation)

Care Partner resources (Davis Phinney Foundation) For Care Partners (APDA)

What “partnering” means? (uhn.ca) 10 Tips for Care Partners (Parkinson Canada)

Care Partner Tips & Tricks (ipmdc) Parkinson’s Disease Caregiver Resources (Stanford)

7 Ways to Help Your Loved One (Johns Hopkins) VA Caregiving Tips | Parkinson’s (Veterans Affairs)

Supporting Someone with Parkinson’s (Parkinson’s UK) The Care Partner Project

Caregiving (CDC)

Feel free to reach out to Larry Gifford at Larry@PDAvengers.com if you'd like to suggest an additional resource for care partners.

50 Simple Ways to Express Gratitude To Your Care Partner

Here’s an enhanced set of simple gratitude ideas for November, offering people with Parkinson’s easy ways to express appreciation for their care partners:

Write a thank-you note: Keep it simple and sincere, sharing specific things you appreciate.

Create a gratitude jar: Add a note each day highlighting something they’ve done that made a difference.

Give them a flower. A beautiful gesture of thank you for all you do.

Go on a photo walk together: Capture moments and places that bring you both joy.

Dedicate a social media post: Publicly acknowledge their impact on your life.

Prepare or order a surprise meal: Celebrate them with a special dinner.

Schedule a massage or foot rub for them: Help them relax and feel pampered.

Spend quality time doing something they enjoy: Show interest in their hobbies or pastimes.

Nominate them for an award or local recognition: Celebrate their dedication.

Break out the Scrabble board: Engage in a fun, lighthearted game together.

Arrange a surprise call from someone special: Help them connect with someone they miss.

Acknowledge the little things they do for you: Take a moment to verbally share your appreciation.

Organize a care partner gathering: A virtual or in-person meetup can offer community support.

Make a donation in their honor: Contribute to a cause that matters to both of you.

Organize respite support for them: Arrange for someone else to assist you for a few hours.

Plan a relaxing activity together: Unwind with something calm like yoga or a peaceful walk.

Take a hike: Embrace the outdoors with a shared adventure.

Handwrite a poem: Craft a few lines expressing what they mean to you.

Buy flowers or their favorite treat: Small gifts show appreciation.

Plan a surprise outing or adventure: Take them somewhere new or exciting.

Watch TV together, distraction-free: Enjoy each other’s company.

Hide a supportive message for them to find: Brighten their day with a surprise note.

Join them in a relaxing activity they enjoy: Bond over something calming.

Offer to help with a task: Lighten their load, even with something small.

Send a daily thank-you note or message for a week: Each day, share a specific reason you’re grateful.

Prepare a picnic: Enjoy a meal outdoors in a special setting.

Give a thoughtful, handmade gift: It could be something simple but meaningful.

Do the dishes without asking: A small chore that means a lot.

Plan a happy hour (home or out): Relax and unwind together with drinks or snacks.

Prepare a playlist of their favorite songs: Share it with them for a special evening.

Plan a quiet movie night: Pick their favorite film and enjoy it together.

Record a voice message: Share a special thank-you message they can listen to anytime.

Make a simple craft or handmade card: Small tokens can carry big meaning.

Cook a simple breakfast or coffee for them: Even small meals can be special.

Frame a favorite photo of the two of you: Add a short note on the back.

Plant a flower or small plant together: Something they can enjoy and watch grow.

Draw a simple picture or doodle for them: A fun gesture to make them smile.

Find an online class or activity they enjoy: Encourage their personal interests.

Create a custom crossword or word search puzzle: Fill it with words meaningful to you both.

Send a special text each morning or evening for a week: Start or end the day with gratitude.

Create a ‘coupon book’ of small favors: Simple gestures, like a foot rub or dishwashing.

Compile a list of their favorite quotes: Print it out as a personalized gift.

Help them reconnect with an old friend: Set up a call or help them write a message.

Plan a board game night: Enjoy a lighthearted activity at home.

Give them a daily reminder of their impact on you: A new compliment each day.

Offer to read to them from a book they love: Share the experience together.

Set up a cozy area for them to relax: Arrange a special space for their downtime.

Play or learn a card game they enjoy: Engage in some friendly, simple competition.

Arrange a “thank you” puzzle: Write a message and cut it into pieces for them to put together.

Record a short video message: Speak from the heart, capturing your appreciation.

These activities are meant to be accessible and meaningful, helping show gratitude in small but impactful ways.

Go to PD Avengers Care Partner Home Page

Go to Care Partner’s Shine Bright and pay tribute to your Care Partner

Join the Fight Against Breast Cancer and Parkinson’s Disease

Guest Blog by Sharon Krischer on October 22, 2024

You can be Cool

October is almost over, but I can’t let it end without my annual PD vs Breast Cancer post. Once again, there is a lot of pink swag available, from scarves and hair accessories to football gear! Really. Breast Cancer is in. It is hip and you can show how hip you are by wearing pink.

For those of us who have had Breast Cancer, we are often much more comfortable about talking about that diagnosis than our Parkinson’s diagnosis. Thanks to the Susan G Komen Foundation and Breast Cancer Research Foundation, it is no longer a taboo topic. Knowledge is power and these organizations have paved the way for us.

All the Pink Swag

Here is just a glimpse of what is available on a website called Fundraising for a Cause

On Bloomingdales website you will find the following:

“Every 14 seconds, a woman is diagnosed with breast cancer.  In support of those affected, we’re proud to raise awareness and funds for the Breast Cancer Research Foundation® (BCRF) and The Tutu Project through our 20th annual Give Pink, Get More campaign.”

Not only can you support BCRF, but you will get $25 in Bloomies rewards for every $250 you spend in October, if you enroll for a mere $15. They have made it a win-win to support breast cancer at Bloomingdales.

Or…Not so Cool

Meanwhile, Parkinson’s disease is not considered hip. We have been late to the game in getting information out about PD. No retail stores are advertising Parkinson’s awareness month in April. There is no Swag readily available to support our cause. I went back to Fundraising for a Cause to see if they have anything for PD. Yes, it is listed under Disease and Health Conditions. When you click on it, it is lumped with other Brain diseases in an ugly gray. You have to scroll way down to find a necklace labeled for Parkinson’s Awareness.

What can you do?

Thankfully, PD Avengers has been working hard to change the narrative and does have some Parkinson’s swag. It has also already begun planning activities for April 2025. April 11—James Parkinson’s birthday—is World Parkinson’s Day. This past April, volunteers reached out to local governments to raise awareness and secure proclamations. On April 11, hundreds of iconic buildings were illuminated in Parkinson’s blue.

For 2025, we hope YOU will join us in Spark the Night or become a “Sparklet” by lighting up your home or business. You can learn more here: WORLD PARKINSON’S NIGHT | SPARK THE NIGHT.

We can also reach out to Fundraising for a Cause and encourage them to create a Parkinson’s campaign using Parkinson’s blue—not gray. Here’s the exact blue to use:

If you have any connections with Bloomingdale’s or other retailers, consider approaching them about supporting Parkinson’s awareness in April. Please keep PD Avengers or me in the loop if you make progress. With PD being the fastest-growing neurological disease, we need to educate both others and ourselves about it—starting now.

Our future, and theirs, depends on it.

Have a great week!

www.twitchywoman.com 

I started Twitchy Woman as a way to exchange ideas and solutions with other whose lives have been affected. It has been recognized by Everyday Health, Healthline, Stanford University and more as one of the top Parkinson’s blogs to follow. Each month I host a free Zoom webinar exclusively for other “Twitchy Women” with Parkinson’s Disease.

Feel free to explore the site – there are goodies on every page to help you live your best life with Parkinson’s Disease.

What to Say to Someone with Parkinson’s and What Not to Say

When initiating conversations with someone who has Parkinson's, it's important to choose topics that are considerate and engaging. Show genuine interest and create an open space for them to share as much or as little as they're comfortable with.

Here are some conversation starters:

Hobbies and Interests:

• "I remember you're into Lego. Have you built anything interesting lately?"

• "How's your experience with improv going? Any memorable moments?"

• "I recall you enjoy movies and TV. Seen anything great recently?"

Parkinson's Advocacy:

• "I admire your work in advocacy and activism. Any recent milestones or projects you're excited about?"

• "How can others get involved in Parkinson's advocacy? Any events coming up?"

Technology and Podcasting:

• "Any new tech gadgets or apps that you find helpful or interesting?"

• "Any new favorite podcasts you’re listening to?"

Books and Writing:

• “I remember you were taking a writing workshop. How’s that going?”

• "Are there any books or authors you've been enjoying lately?"

Daily Experiences:

• "How do you manage your day-to-day activities? Any tips or routines that work well for you?"

• "Have you discovered any strategies for making certain tasks easier or more enjoyable?"

Health and Well-being:

• "How have you been feeling lately? Any positive changes or challenges you're navigating?"

• "I'm curious about your approach to maintaining well-being. Any particular exercises or practices you find beneficial?"

Parkinson's Community:

"I'm curious, have you connected with others in the Parkinson's community? Any memorable stories or friendships that stand out?"

Favorite Local Restaurants:

• "With the diverse culinary scene in Vancouver, any favorite local restaurants or hidden gems you like to frequent?"

Community Impact Goals:

• "In your community involvement, what goals do you have for making a positive impact locally, especially considering your passion for Parkinson's advocacy?"

Parkinson's Research Updates:

• "Given your interest in ending Parkinson's, are there recent advancements in research that have caught your attention? Anything promising on the horizon?"

Night Time Symptoms

When initiating a conversation with someone with Parkinson's, it's essential to be mindful of certain considerations. Remember, the key is to approach the conversation with empathy, respect, and an open mind. Listening actively and following their lead can help create a positive and inclusive interaction.

Here are things to avoid:

Assuming Limitations:

• Avoid making assumptions about what the person can or cannot do. Parkinson's affects individuals differently, and it's best to let them share their experiences.

Insensitive Remarks:

• Steer clear of making insensitive comments or jokes about Parkinson's. Humor is subjective, and what might be funny to some could be hurtful to others.

Overlooking Non-Motor Symptoms:

• Don't solely focus on motor symptoms. Parkinson's also involves non-motor symptoms, and discussing these aspects can provide a more holistic understanding.

Interrupting or Rushing:

• Be patient and avoid interrupting. Parkinson's may affect speech and movement, and giving the person ample time to express themselves is crucial.

Ignoring Personal Space:

• Respect personal space, especially considering potential mobility challenges. Allow the person to dictate the level of physical interaction comfortable for them.

Pushing for Details:

• Avoid pushing for detailed information about their health unless they willingly share. Some individuals may prefer to keep certain aspects private.

Offering Unprompted Advice:

• Refrain from providing unsolicited advice on treatments or lifestyle changes unless the person specifically asks for input.

Ignoring Communication Preferences:

• Everyone has different preferences for communication. Some may prefer written communication, while others may be comfortable with verbal interaction. Respect their choice.

Underestimating Abilities:

• Avoid underestimating the person's capabilities. They may have developed effective strategies to manage their condition, so treat them with the same level of competence as anyone else.

Pity or Overemphasis:

• Resist expressing pity or overly emphasizing their condition. Treat them with the same dignity and respect you would offer to anyone else.

Avoiding Eye Contact:

• Parkinson's might affect facial expressions, but that doesn't mean avoiding eye contact. Maintain respectful eye contact during the conversation.

Comparing Experiences:

• Refrain from comparing their experience to others with Parkinson's. Each journey is unique, and making comparisons may not be helpful.

Discussing Cure Guarantees:

• Don't make promises about cures or treatments unless you have reliable and current information. False hope can be detrimental.

Overusing Medical Jargon:

• Be mindful of using excessive medical jargon. If discussing medical aspects, ensure that the person is comfortable with the level of detail you're providing.

Focusing Solely on Illness:

• Avoid letting the conversation revolve solely around Parkinson's. Engage in diverse topics to ensure a well-rounded and enjoyable conversation

I’m Still Standing:

A Reflection on Resilience with Parkinson's

Guest Blog by Frank Antonicelli

It’s not whether you get knocked down; It’s whether you get back up.” - Vince Lombardi

For the past 17 years, Parkinson's disease has tested me with countless challenges. It's shaken my body, mind, and spirit in ways I never imagined. But instead of battling PD as an enemy, I've chosen to embrace it as part of my journey. I’ve learned to adapt, finding new ways to live a fulfilling and meaningful life, rather than letting the condition define me.

Along this path, I've experienced both victories and setbacks. In 2020, my health took a severe downturn—my meds stopped working, and my symptoms became so overwhelming that I was bedridden and needed around-the-clock care. I was no longer sure I had a future.

One of the most transformative moments came when I got Deep Brain Stimulation (DBS) in November 2020. It greatly improved my quality of life and renewed my sense of purpose. I realized I didn’t have to put my dreams on hold. I began to write again, create music, produce videos, start a T-shirt brand and even launch a small publishing company—all the creative endeavors I once thought were beyond my reach. I gained another chance to become who I wanted to be.

The most important lesson Parkinson’s has taught me is to focus on the present with patience and persistence. There's a scene from the movie The Gumball Rally that perfectly captures this idea. The drivers are readying for the race when one of them looks at his co-pilot, tears off the rearview mirror and says, "The first rule of Italian driving is 'Whatsa behind me is not important.'"

That philosophy has become one of my guiding principles. While learning from the past is vital, I’ve discovered it’s just as important not to dwell on it. The only way forward is to embrace where you are now, adapt to your circumstances, and live fully in the moment.

Yes, there are struggles and dark days when I don’t feel like getting up. But I remind myself that while Parkinson’s may shape the path I walk, it doesn’t dictate how I walk it. With consistency and patience, I've continued to move forward—even if it’s only an inch at a time.

This journey has also led me to become a Parkinson's advocate, sharing my story to inspire others to find their own paths. Through it all, I’ve learned that resilience isn’t just about standing your ground—it’s about moving with change, embracing it, and striving to live a life full of purpose and happiness. Parkinson’s is part of my story, but it doesn’t define who I am.

I’m Frank. I’m still standing, and I’m living life on my terms.

Navigating Travel with Hidden Disabilities: Essential Tips for the Parkinson's Community

Living with Parkinson's disease comes with unique challenges,
especially when it comes to navigating daily life and travel. 

Written by: Karen Nguyen

Thankfully, numerous airports globally have introduced initiatives to support travelers with hidden disabilities. One notable example is the Hidden Disabilities Sunflower Program, either a lanyard or sticker on your boarding pass that is free at information desks, discreetly indicate to airport staff that you may require additional assistance or patience.

Displaying the Sunflower Signifies You May Need Extra Help

Wearing this lanyard or putting the Sunflower sticker on your boarding pass serves as a signal for hidden disabilities, promoting understanding and patience among staff and fellow travelers, thereby raising awareness. It can alleviate anxiety by providing reassurance that your needs will be discreetly recognized and accommodated.

Air Travel Tips for the Parkinson's Community

Here are some practical tips: 

• Pre-Arrange Assistance: Contact your airline ahead of time to request any necessary accommodations.

• Pack Smart: Keep medications and essential items in your carry-on for easy access.

• Use Mobility Aids: Don't hesitate to use wheelchairs or mobility aids offered by the airport.

• Plan for Extra Time: Allow for additional time at each stage of your journey to reduce stress.

Keeping Your Lanyard:

Once you receive the Sunflower lanyard, it's yours to keep, and you can bring it on future trips. With over 240 Sunflower-friendly airports globally, having your lanyard on hand ensures you're prepared for a comfortable and supported travel experience wherever you go.

Support Icons: 

On your personalized Sunflower card, you can discreetly highlight the type of support you need. There is space to add up to five icons on the back of the card, but you only need to include the ones that are useful to you. You can add anywhere from one to five icons.

The Power of the Sunflower Lanyard Program

Since its launch in 2016, businesses from every sector have been joining the global Sunflower network. This includes companies in retail, travel and tourism, transport, railway networks, coach and bus services, and ferries. The network has also expanded to education (universities, schools, and colleges), healthcare, central and local government agencies, football teams, theme parks, theaters, and financial institutions.

Positive Feedback 

Feedback from users has been overwhelmingly positive, with many reporting that the lanyard helps them navigate the airport more comfortably. As awareness of the program grows, so too will its benefits.

Sunflower Program Statistics

• 32% of Sunflower wearers use it while shopping; 21% use it when traveling abroad.

• Over 90% of Sunflower wearers are more likely to visit a store in the Sunflower network.

• Over 70% would recommend a Sunflower network store.

• Over 60% of road users in England felt more confident using motorways with the Sunflower symbol on their vehicles

Unveiling Misconceptions: Hidden Disabilities Sunflower Program Explained

Common Misconceptions

1. Disclosure: You don't need to disclose your disability to get a Sunflower lanyard. There is no qualifying list of invisible disabilities.

2. Benefits: Wearing the Sunflower prompts people to offer assistance, allowing you or your carer to communicate your needs discreetly.

3. Explanation: You don't need to explain why you are wearing the lanyard. It simply signals that you might need extra help, understanding, or more time.

4. Usage: It’s up to you when to wear the Sunflower. Hidden disabilities can be situational, temporary, or permanent but not always present.

Learn More and Get Involved

While many airports and businesses are encouraged to consider joining the Hidden Disabilities Sunflower network. Embracing this program demonstrates a commitment to inclusivity and making a positive impact on the community.

Sometimes, people might question whether you have a disability because you don't look like you have one. Some disabilities, conditions, or chronic illnesses aren't immediately obvious to others. This can make it difficult for people to understand and believe that someone with a "non-visible" condition genuinely needs support. 

By utilizing these resources and programs, individuals with Parkinson's and other hidden disabilities can enjoy a more accessible and stress-free travel experience. Embracing these initiatives is a step toward a more inclusive world.

Check if your airline has implemented this program: Airports around the world 

Celebrating Michael J. Fox: Strength and Guidance He Provided on My Parkinson’s Journey

Guest Blog by: By Frank Antonicelli

June 9th holds a special meaning for me and countless others with Parkinson’s Disease. It’s Michael J. Fox’s birthday, who is turning 63—someone who has profoundly influenced my journey with Parkinson’s, even though we’ve never met. His resilience, optimism, and openness have been a beacon of hope and strength, guiding me through the many challenges of living with this condition.

I was diagnosed with Young Onset Parkinson’s Disease at age 43 in 2007. At the time, there weren’t as many resources on YOPD as there are now. Those were very uncertain times for me, as I had no family history of Parkinson’s, nor did I know anyone with the condition.

KATE GREEN/BAFTA/GETTY IMAGES

When Michael J. Fox revealed his PD status in 1998, it was a shock. Up until then, I held the false assumption that Parkinson’s was an older person’s disease. Fast forward to 2004, when my own PD symptoms began to show. It started with my wife noticing my arm wasn’t swinging when I walked. I shrugged it off as an old sports injury. Later, playing golf, I couldn’t sync my body with my mind. My balance was off, alarming me. On good days, I felt a false sense of security, but my symptoms worsened. I developed a gait, and simple tasks like buttoning a shirt became challenging. A fall down the stairs finally prompted me to seek help.

After various treatments and inconclusive tests, a neurologist diagnosed me with Parkinson’s Disease. The diagnosis hit me hard. I wasn’t ready to accept it. Then, I thought about the Barbara Walters interview with Michael J. Fox and how he calmly shared his insights on his diagnosis and battle. Without anyone in my life with the condition, I looked to Michael for guidance. I came across his book "Lucky Man" and what got me to read it was a tagline I saw that said, "A written account of what it's like to be a 30-year-old man who is told he has an 80-year-old's disease".

As I read through the book, I felt such an openness and candidness in his words and what stuck out the most is that he never expressed an ounce of bitterness or "why me" when telling his story. Most of all, I really liked how he placed the utmost respect on his support system of doctors, therapists, friends, family and colleagues.

He became a source of inspiration and made me feel less alone in my journey. His openness about his experience made me not want to be so secretive about mine. I spent quite a few years trying to mask my symptoms from coworkers, friends and family. I thought I was protecting my feelings by masking, but in reality I was becoming more isolated and distant from my old self. I no longer felt like Frank the athlete or Frank the funny Italian guy, I felt like Frank with PD.

It felt liberating when I finally shared my PD diagnosis with the people in my life. Of course most of them already knew, but it was something we never talked about until I decided to share the news. This is where I learned the true meaning of gratitude as so many of my friends and family stepped up to support and encourage me.

As time went on I continued to look to Michael for positivity. His quotes have always made me think twice about whatever challenge I was going through and to not be so hard on myself. It takes a lot of character to maintain a face of optimism and humor when dealing with the condition. One that stands out is,"Life is great. Sometimes, though, you just have to put up with a little more crap." Another inspiring one is, “I’ve said Parkinson’s is a gift. It’s the gift that keeps on taking, but it has changed my life in so many positive ways.”

I took a moment and thought about what Parkinson's has given me, besides a shaky disposition, and I can say that Parkinson’s has given me a lot. It’s given me perspective, it's given me gratitude, it's given me the opportunity to connect with interesting people, it's given me a voice to share my story. In a way, it's given me a second, more creative and compassionate life.

Speaking of gratitude, this quote from Michael kept me moving forward, “Gratitude makes optimism sustainable. If you're grateful for the opportunities you have, for what you've been given to do work-wise, for the opportunities that exist, you're optimistic. If you can just find those moments, I always feel that if you flip the coin 100 times, you're going to come up heads 51.”

It has also reignited my passion for writing. In my twenties, I dabbled with writing poems, but let it slip away as I entered the professional world and focused on my career. Parkinson's lit a fire under me and prompted me to start writing again. It’s pushed me to start my own small publishing company to release my poems and songs.

These endeavors have also given me the confidence to share my PD story in the hope that it helps others. I want everyone affected by Parkinson’s to know that they are not alone in this.

Michael has been a part of my Parkinson’s journey since the beginning. He inspired me to stop grieving and start embracing a good life with Parkinson’s. Checking in with Michael’s activities, like his surprise appearance at the 2024 EE BAFTA Film Awards, motivates me. His foundation’s work in research funding is incredible. I’m confident a cure will be found, and I hope it happens in my lifetime. But even if it doesn’t, we must continue fighting.

Happy Birthday, Michael, and thank you for everything you do.

Decoding Parkinson’s After Dark

As the night unfolds, the challenges faced by individuals with Parkinson's disease often extend beyond the mere passage of time. Nighttime, once a sanctuary for rest, becomes a realm where the intricacies of the condition manifest with a unique intensity. From involuntary tremors that persist in the quiet hours to the stiffness that constricts movement even within the sanctuary of a bed, the nocturnal landscape for those with Parkinson's is fraught with a myriad of symptoms. Join us as we navigate the shadows, shedding light on the silent struggles that unfold in the darkness, offering a glimpse into the intricate tapestry of Parkinson's nighttime symptoms.

• Tremors: Involuntary shaking, which can persist during the night.

• Rigidity: Stiffness in muscles, making movement difficult, even in bed.

• Bradykinesia: Slowness of movement, affecting activities like turning in bed.

• Sleep Disturbances: Difficulty falling asleep or staying asleep.

• Restless Legs Syndrome (RLS): Uncomfortable sensations in the legs, leading to a constant need to move them.

• Pain: Muscular or joint pain that can be more pronounced at night.

• Freezing: Temporary inability to initiate movement, which can be particularly challenging when trying to get up at night.

• Urinary Issues: Increased frequency or urgency to urinate.

• Dystonia: Involuntary muscle contractions, causing abnormal postures, which can occur during sleep.

• Excessive Sweating: Night sweats or increased perspiration during sleep.

• Hypotension: Low blood pressure, leading to dizziness or lightheadedness when getting up.

• Drooling: Increased saliva production, especially during sleep.

• Nighttime Cramps: Painful muscle cramps, especially in the legs.

• Temperature Sensitivity: Nighttime temperature changes might be more noticeable.

• Frequent Awakenings: Waking up multiple times during the night, disrupting overall sleep quality.

• Inability to Turn in Bed: Difficulty changing positions due to muscle stiffness.

• Difficulty Initiating Sleep: Struggling to start the sleep process, which can be linked to medication timing.

• Sleep Apnea: Pauses in breathing during sleep, which can be more prevalent in individuals with Parkinson's.

• Vivid Dreams or Nightmares: Disturbing or intense dreams that may disrupt sleep.

• Increased Urination at Night: Nocturia, or the need to urinate frequently during the night.

• REM Sleep Behavior Disorder (RBD): RBD is characterized by the absence of the normal paralysis that occurs during REM (Rapid Eye Movement) sleep. People with RBD may punch, kick, shout, or even leap out of bed while dreaming. This can be not only disruptive for the person experiencing it but also potentially dangerous. RBD has been recognized as a potential precursor to neurodegenerative disorders, including Parkinson's disease. In fact, it can manifest years before the typical motor symptoms of Parkinson's appear.

In the stillness of the night, these symptoms weave an intricate narrative of resilience and challenge for those grappling with Parkinson's disease. From the restless legs that dance beneath the sheets to the vivid dreams that haunt the slumber, each symptom is a chapter in the unfolding story of Parkinson's after dark. Understanding these nighttime intricacies is not only a step towards better management but also a testament to the strength and courage exhibited by individuals facing the darkness head-on. Through awareness and compassion, we aim to illuminate the path towards improved support and care, ensuring that no one faces the night alone in their battle against Parkinson's.

The Art of Being Patiently Persistent: Navigating Healthcare and the Journey to Wellness

Guest blog by Frank Antonicelli

Most of us know the old saying, "Patience is a virtue." In our fast-paced world, where instant gratification is often the norm, the importance of that phrase in healthcare cannot be overstated. The journey to wellness is rarely a sprint; instead, it's a marathon that requires a combination of resilience and endurance.

In my personal journey with Parkinson's Disease, I've come to adopt and live by the mantra "Be Patiently Persistent" as a way to survive and take control of my care. It's incredible how such a simple statement has profoundly and positively impacted my pursuit of mental and physical wellness over the years.

However, putting it into practice did not initially come easy. In fact, my first experience dealing with the healthcare system taught me how necessary patience and persistence are if you want to gain any control over the care you receive.

The Complexity of Healthcare

One of my biggest challenges was navigating the healthcare system, which tends to be needlessly complex, intimidating and time-consuming. From scheduling appointments to waiting for test results and coordinating with different specialists, the process really tested my patience and spirit.

Before being diagnosed with Parkinson's, my experience with the healthcare system was limited. I didn't know what was causing my symptoms, so I saw a bunch of different doctors and physicians and went through countless batteries of tests, all of which seemed to lead to a dead end and no clear answer for what was going on with my body. This daunting process took its toll until I finally reached the right person, Dr. Robert Miller, who took the time to listen and ask the right questions. Dr. Miller played an instrumental part in helping narrow down and identify specific symptoms and referred me to a neurologist, Dr. Marie Michalek, who was able to accurately determine what was wrong with me. This was one of my first exercises with being patiently persistent, which finally led to a breakthrough with my Parkinson's diagnosis.

Understanding and accepting the complexity of healthcare was one of the first steps I took towards developing the resilience needed to pursue my well-being persistently. It became clear that I needed to educate myself as much as possible on the intricacies of the healthcare system to take better charge of the care I was seeking.

Building a Relationship with My Healthcare Team

Patience was crucial in building a solid relationship with my healthcare team. I learned that establishing trust takes time, requiring open communication and a willingness to work together towards a common goal. Over the years, I was fortunate to form a strong relationship with my healthcare team and Joe Green, my Movement Disorder Specialist (MDS). During our eight years working together, Joe and I got to know and understand one another fully through consistent communication and hard work. We took the patiently persistent route to determine what worked best for me and what didn't. This resulted in a solid strategy for exercise and stress management that I follow to this day.

A great byproduct of my relationship with Joe was the creation of my first audiobook, Embracing Parkinson's, which is a recorded series of conversations between Joe and me that chronicles our experience and the strategies we developed to manage my PD symptoms. 

One of my top rules for building a solid relationship with my healthcare professionals is to feel comfortable asking questions. In fact, I encourage others to ask their providers as many questions as possible. Going in knowledgeable about this open dialogue helped us create a relationship where we both understood each other.

My advice is to be patient with healthcare providers as they work to understand the patient's unique health situation and needs to develop a personalized care plan.

Navigating Diagnosis and Treatment

Receiving a diagnosis or undergoing treatment can be a very stressful and uncertain experience. Patience is essential as you wait for the correct diagnosis and treatment plan to unfold. In some cases, it may take a significant amount of time to find the most effective approach, and persistence is key to exploring different options and advocating for your well-being.

Throughout my journey, I have tried a myriad of treatments, including chiropractic, acupuncture, massage therapy, Muscle Activation Techniques (MAT), hyperbaric oxygen therapy, massage therapy, peptide therapy, mini sauna therapy, IV nutrition therapy and supplements, etc.

While some were effective and worked in the short term, I've come to experience that PD is a constantly evolving beast, which has led me to adjust my approach accordingly to keep up. In many ways, it's like trying to hit a moving target. Once you think you've got it in your sights, something changes, and you are set back a few steps or, in some cases, back to square one. Over time, this can get very tiring and discouraging, but in order to survive and live the best life I can, I realized I needed to be patient and persistent with my treatment processes.

Each time, I took the necessary steps to see the treatment through and tried my best to be as knowledgeable as possible. I also learned to recognize when a specific treatment wasn't working or was negatively impacting my health and how to weigh out my options before letting go.

Small steps can lead to big victories. Whether overcoming a physical hurdle or mastering a new aspect of self-care, every small victory contributes to the larger narrative of healing.

Embracing Lifestyle Changes and Routine

I've also discovered that my path to wellness required me to make significant lifestyle changes, including a healthier diet, regular exercise, and managing my stress levels. These changes didn't happen overnight, and patience was vital in allowing me the time to adapt. Even in small steps, persistent effort has led to meaningful and sustainable improvements in my overall health. Even on the days I wake up feeling lousy, I remind myself, "If I don't use it, I'm going to lose it."

I learned to establish a routine that includes walking/jogging 2+ miles and/or riding bike 5 to 10 miles every other day. Each day, when I rise, I spend half an hour in bed stretching, doing core work and prayer. Once up, I do large body movements and add isometric or resistance (squats, deadlifts, power cleans, pull-downs f/b, seated press, leg stretching & strengthening exercises, shoulder/chest stretching & strengthening exercises).

Mental and Emotional Resilience

The journey to wellness can take a toll on mental and emotional well-being. Knowing when to exercise patience with myself and the process was crucial during moments of uncertainty and health setbacks. In early 2020, I experienced a severe health setback that I wasn't sure I was going to bounce back from. I had to develop a resilient mindset and persistently work towards getting back on track. Thankfully, I also had the support of my friends, family and healthcare providers.

This setback eventually led me to make the leap into getting Deep Brain Stimulation (DBS) surgery. The process leading up to the surgery was an exercise in being patiently persistent, as I needed to go through a process to ensure I was a candidate for the procedure and dealing scheduling delays, as the Covid pandemic was in full swing. During this time, I researched as much as possible and asked as many questions as possible to ensure I was informed and confident about my decision. I also had to put my trust in my doctors and in the process. My neurologists Venkatachalam Mangeshkumar and Stephen Falowski were guiding lights and helped me through every step of the way, from getting my surgery confirmed, performing the procedure, and my post-op care. I'm fortunate to report that the DBS procedure was a success and has dramatically improved my overall quality of life.

Embracing the power of positive thinking and visualization has also been a game-changer for my health. The mind-body connection is a profound force, and when we channel positive thoughts, we create an environment conducive to healing and well-being. Scientific studies suggest a positive mindset can boost the immune system, reduce stress, and improve overall physical health.

Visualization takes it a step further, allowing us to picture ourselves in a state of optimal health. By vividly imagining my body functioning at its best, I was able to send powerful signals to my subconscious, which influenced my actions and habits in a way that aligned with my wellness goals. It's not about denying challenges but approaching them with a mindset that fosters resilience and recovery.

Faith and Belief

Everyone has their own system of beliefs and ways of coping with illness and other difficult situations that life presents, which I respect and admire. For me, faith and prayer have held immense significance in my healing journey. Believing in something greater than myself provides a comforting anchor during challenging times and has fostered a positive mindset, which has been crucial for my recovery.

In the face of Parkinson’s, my faith became a driving force, instilling resilience and grit, which has provided me with solace and the strength to move forward each day. The act of prayer has been a powerful tool for reducing my anxiety, helps me accept my condition and reminds me of everything and everyone I am thankful for.

While I recognize the importance of medical interventions, integrating faith and prayer into my healing process has enhanced my mind-body connection and has contributed to a more holistic approach to well-being.  Without my faith and the support of my friends, family and healthcare team, I don’t think I would be standing here today. I am truly grateful for what I have.

Creative Outlets and Everyday Life

In addition to healthcare, I have applied being "Patiently Persistent" to pretty much every other area of my life. I love music, especially The Beatles, and I started writing poems and song lyrics in 1990. After a hiatus, I decided to revive my creative projects, and in 2016, I began reworking my early pieces as a therapy exercise and writing new poems/song lyrics.

In 2017, I created Be Still Publishing as a publishing house for my writings. Around the same time, I began working with a record producer and videographer. We started putting music and visuals to my lyrics and have been slowly but steadily releasing songs and videos I am proud of. Through being patiently persistent with our creative processes, we've allowed ourselves to take the necessary time to collaborate, which has helped evolve our music and video output in a very organic and authentic way.

Being patiently persistent has also helped me get through some of the hassles of everyday life. For example, I got locked out of one of my online accounts and had to go through an arduous process of speaking with multiple customer service agents who, instead of helping, passed me onto the next person. After hours of being put on hold and redirected to redundant departments, I started to falter. At that point, I took a deep breath and told myself that if I had a solid strategy, I could reach the right person to help me.

Shortly thereafter, I was able to talk to someone knowledgeable in the company, learn about their process, and get my account back. It took a lot of time, and yes, I did get frustrated but being patiently persistent ultimately paid off.

Last Words

Whether it's healthcare, creative endeavors, or just everyday life, being patiently persistent is not a sign of weakness; rather, it is a testament to a commitment to my own well-being. I've accepted and embraced the journey and learned to understand that progress may be gradual, but every step forward is a victory. By practicing patience and persistence, I've empowered myself to overcome obstacles, adapt to changes, and ultimately achieve a state of lasting wellness.

So, as parting words, If you are going through a rough time, I encourage you to breathe deep, tighten your laces, and continue the journey with patience, persistence, and the belief that your health is worth the effort.

Essential Self-Care Nutrients

Guest blog by Bob Wilson

Be Your Own Healthcare Quarterback

Guest Blog by Frank Antonicelli

In football, the quarterback is a pivotal player, responsible for guiding the team to success by making strategic decisions on the field. Similarly, in the game of life, you are the quarterback of your own healthcare team. Taking a proactive role in the management of your health is crucial for a winning strategy.

Knowledge is Power

Understanding your own health is the first step to becoming an effective healthcare quarterback. Educate yourself about your medical history, any existing conditions, and potential risk factors. Armed with this knowledge, you can actively participate in discussions with healthcare professionals, ask informed questions, and make decisions that align with your personal health goals.

Proactive Prevention

A key aspect of leading and directing your personal healthcare strategy is being proactive in preventing health issues. Regular doctor’s visits, check-ups, screenings, and living a healthy lifestyle can potentially go a long way in preventing diseases or catching them at an earlier and more treatable stage. Taking charge of preventative measures is an invaluable investment in your long-term health and well-being.Build a

Strong Team

As your own healthcare quarterback, you have the ability to assemble a team of healthcare professionals who work collaboratively to support your health goals. This may include primary care physicians, specialists, nutritionists, and fitness experts. Building a strong team ensures that you receive comprehensive and personalized care, addressing both your physical and mental health needs.

Advocate for Yourself

Advocacy is a vital skill in quarterbacking your healthcare. Be an active participant in your medical decisions, ensuring that your concerns are heard and your preferences are considered. If something doesn't feel right, don't hesitate to seek a second opinion. Remember, you are the captain of your healthcare team, and your voice matters.

Navigate the Playbook of Healthcare

Understanding the healthcare system can be complex, but as your own quarterback, you need to navigate the playbook. Be familiar with your insurance coverage, know how to access medical records, and stay informed about healthcare policies. Having this knowledge can give you the power to make informed decisions and ensures that you receive the care you need.

Being your own healthcare quarterback is not just a responsibility; it's a powerful and empowering role that can have a positive impact on your quality of life. By taking an active role in your health, you become the driving force behind a winning strategy for well-being. Remember, you have the knowledge, the power, and the ability to lead your healthcare team to success.It's time to step into the role of the quarterback and take control of your health journey.

Paraquat Gets EPA Thumbs Up: Advocates Get The Agency’s Middle Finger

Commentary by Larry Gifford

U.S. Environmental Protection Agency

The recent EPA endorsement of paraquat, despite mounting evidence linking it to Parkinson's disease (PD), is a profound betrayal of public trust. This decision, seemingly driven by corporate interests, disregards the health and well-being of communities across the nation, fueling an intensified wave of outrage and disappointment.

The EPA's report, touting the benefits of paraquat for crop production, is a stark slap in the face to those who tirelessly advocate for environmental safety.

The EPA ruling reads, “After a thorough review of the relevant studies, the Agency concluded that the weight of evidence was insufficient to link paraquat exposure from pesticidal use of U.S. registered paraquat products to PD in humans.”

Despite acknowledging the potential link between paraquat and PD, the agency's assertion that benefits outweigh risks feels like a callous dismissal of the suffering and harm inflicted on individuals and families affected by this debilitating disease.

The ruling continues, “Although Parkinson’s Disease (PD) is not an expected result of the pesticidal use of paraquat, a connection has been hypothesized throughout the scientific literature, and so out of an abundance of caution, the Agency conducted a systematic review to assess the relationship between paraquat exposure and PD.”

Well, thank goodness they did a “systematic review” — cue the exaggerated eye-roll. But, unfortunately, the agency must not have read the article which noted exposure to paraquat within 1,600 feet of a home increases risk of developing Parkinson’s disease by 75%, or the University of California, Los Angeles, and the University of Southern California study which found that people exposed to paraquat at a younger age -- in their teen or young adult years -- had an increased Parkinson's risk of 100 to 500 percent, depending on overall exposure. Hmmm… surely The Michael J Fox Foundation included them among the studies and 107,000 signature petition pleading the EPA to ban paraquat.

Golly, I think I know what happened. This is funny. Well, it’s funny, not-funny. Sad, really. Actually a bit embarrassing for the EPA.

The agency didn’t read it.

You read that correctly. They didn’t get around to it. The agency admits it failed to fully consider scientific studies and testimony submitted by the Michael J. Fox Foundation and Earthjustice.

The ruling reads, “First, EPA recognizes that the Michael J. Fox Foundation and Earthjustice submitted letters to EPA on August 4, 2023, along with information that they believe is relevant to EPA’s consideration of paraquat’s health risks. This information consisted of approximately 90 submissions including scientific studies, as well as testimony filed in an ongoing state lawsuit concerning paraquat. While the Agency has started reviewing that material, it was unable to complete that review prior to the issuance of this document.”

The EPA's decision reflects a deeply flawed regulatory process that prioritizes profit over public health. By downplaying the significant risks associated with paraquat exposure, the agency not only undermines its own credibility but also perpetuates a system of injustice that disproportionately impacts vulnerable communities.

More than 10,000,000 pounds of Paraquat is used on U.S. crops each year. Paraquat is the deadliest pesticide used in U.S. agriculture, capable of killing a human with just a sip, as the U.S. Environmental Protection Agency (EPA) warns. For the record, it’s also used in Australia.

Despite the growing body of research linking paraquat to PD, the EPA's insistence on insufficient evidence is a blatant disregard for scientific consensus and the lived experiences of those affected. This dismissal of legitimate concerns only serves to amplify the outrage and disappointment felt by communities who expected better from their government.

In the end, the EPA's approval of paraquat is not just a failure of regulatory oversight but a betrayal of the fundamental duty to protect public health. Until meaningful action is taken to address the risks associated with paraquat exposure, the cycle of outrage and disappointment will persist, leaving communities vulnerable and disillusioned.

Thank you to The Michael J. Fox Foundation for including and representing PD Avengers and other organizations in the Unified Parkinson's Advocacy Council in the EPA filing.

---

Countries where paraquat is banned or severely restricted

1. .Austria

2. Belgium

3. Belize

4. Benin

5. Brazil

6. Bulgaria

7. Burkini Faso

8. Cambodia

9. Canada

10. Caribbean

11. Chad

12. Chile 

13. China

14. Columbia

15. Cote d’Ivoire

16. Croatia

17. Cyprus

18. Czech Republic

19. Denmark

20. Dominican Republic

21. England

22. Estonia

23. Finland

24. France

25. Gambia

26. Germany

27. Greece

28. Guinea

29. Guinea-Bissau

30. Hungary

31. Iceland

32. Indonesia 

33. Ireland

34. Italy

35. Kuwait

36. Latvia

37. Lithuania

38. Luxembourg

39. Malaysia

40. Mali

41. Malta

42. Morocco

43. Mozambique

44. Netherlands

45. Niger

46. Northern Ireland

47. Norway

48. Oman

49. Peru

50. Philippines

51. Poland

52. Portugal

53. Romania

54. Saudi Arabia

55. Scotland

56. Senegal

57. Slovakia

58. Slovenia

59. South Korea

60. Spain

61. Sweden

62. Switzerland 

63. Taiwan

64. Togo

65. Wales

THE WORLD’S SMALLEST RECHARGEABLE DBS IPG WITH REMOTE PROGRAMMING CAPABILITIES

1. It’s the World’s Smallest Rechargeable DBS IPG with Remote Programming Capabilities

Liberta RC’s IPG stands out for its compact design and low implant profile.

To put its size in perspective, picture a spoonful of water. The Liberta RC IPG could fit inside, with room to spare.

2. It Has the Longest-Lasting Battery Charge

There’s a reason so many of us do our battery-recharging in the middle of the night. No one wants to put life on hold for it.

Which brings us to a surprising fact about Liberta RC: Even with its small size, users get excellent battery performance.

Liberta RC’s charge lasts for 37 days on nominal settings, meaning it only needs to be recharged as few as 10 times per year.2*

This is a miniature battery to get energized about.

3. It Can Receive and Adjust Therapy Remotely

We say it time and time again: The future of healthcare is connected, and that future is already here.

The Liberta RC DBS system features our award-winning NeuroSphere Virtual Clinic, a life-changing piece of connected health technology. It lets people communicate with their doctors, ensure proper settings and functionality, and receive new treatment settings remotely as needed — without having to be in a doctor’s office.^

It’s nice to have that extra degree of control over your care, and to know that support is within reach even when you’re out and about.

LEARN MORE ABOUT THE SMALLEST DBS IPG IN THE WORLD

Spark of Change: Igniting Parkinson's Advocacy

by Kristi LaMonica PhD.

I live about a 20-minute drive north of New York's state capital Troy. This area has become quite the epicenter for Parkinson's advocacy, and I'm fully on board. Last year, Representative Paul Tonko (D-NY), was bipartisan co-sponsor of the National Plan to End Parkinson’s Act. I'm lucky to live right in the district of Representative Tonko. The only downside was that the plan didn't make it to the voting floor in 2022. But hey, the sponsors were true to their word –brought it back in 2023. And once again, Representative Tonko stood strong as a bipartisan co-sponsor.

Following the national plan closely through my PD Avengers connection and the Michael J. Fox Foundation (MJFF), I jumped at advocacy opportunities. My debut was at the end of March when I became part of a small group asked to meet with a staffer from Senator Kirsten Gillibrand's team (D-NY). I was given just three minutes to share my story. The goal was to sway Senator Gillibrand into co-sponsoring the national plan – and she did.

Fast forward a bit, earlier this month, MJFF contacted me again. I was invited to a "Faces of Parkinson’s" roundtable discussion with Senator Tonko and other local advocates. The day kicked off with me on a little parking adventure – street parking can be quite a puzzle. Flustered, I made it to Representative Tonko's office and was relieved to be greeted by familiar faces.

(Kristi LaMonica is third from left sitting next to Congressman Paul Tonko. Photo Credit: Samantha Simmons

Representative Tonko kicked things off by discussing how support for a National Plan to End Alzheimer’s has done wonders for research and drug pipelines. During this discussion, my dyskinesia acted up and I couldn’t sit still. Honestly, I took it as a good sign. When people with Parkinson’s advocate, we often look too put-together. I believe when we look too good, it works against our cause. It makes it more difficult for people to justify more funding for Parkinson’s. To that point, none of us in the room exactly fit the traditional image of someone with Parkinson's – you know, the stooped, white-haired, elderly man shuffling about.

We covered a lot of ground – from research to medications and nearly everything in between. Talking about the number of diagnoses created the perfect segue into discussing young onset Parkinson’s disease (YOPD), the unique challenges we face and for a request the YOPD community not be forgotten in the National Plan. The struggle to get disability support was brought up, and the research gap concerning women and hormones got its moment in the spotlight. I made sure to let Representative Tonko know that data from the PD Avengers and Fox Insight Experiences of Women with PD survey is open access via Fox Den. For researchers, it's like a treasure trove of preliminary data for grants. Overall, our meeting was a success. We didn't have to convince Representative Tonko to stand with us, but we did manage to introduce him to some new aspects.

Yesterday, another email from MJFF landed in my inbox. I'm in for a meeting with Senator Chuck Schumer's staffers (D-NY) on September 5th. It syncs perfectly with my teaching schedule, so of course, I'm saying yes!

MJFF public policy advocate and person living with young onset Parkinson’s Krisit LaMonica, PhD, of Troy, New York shared her Parkinson’s journey with New York lawmakers and the impact a PD Registry would have on research. Photo Credit: New York State Senate

In addition to advocating for the National Plan, I was invited to speak at a press event at the state capital to support a state registry for people with Parkinson’s. I was not feeling my best that day. I was off. And I wasn’t on by the time I had to leave. It was the first time I had to ask my husband to drive me anywhere. On the way to the event, I ditched my prepared speech and just spoke from the heart about the challenges Parkinson’s gave me that day. The bill unanimously passed the state senate but unfortunately the New York State Assembly did not take up the bill.

I implore each of you to reach out to state lawmakers in support of state registries across the country for Parkinson’s disease.

EDITOR’S NOTES: There is not a national registry for Parkinson’s in the United States. But there is a plan afoot. The goal is for each state to establish its own registry and feed the data into the Center for Disease Control's National Neuro-logical Conditions Surveillance System, which tracks the incidence and prevalence of many neurologic disorders, including Parkinson's.

If you would like to learn more about state government relations and how you can be involved in advancing work toward a cure for Parkinson’s, please register for the second annual State of the States webinar: 50 States, 50 Legislatures, and Thousands of Pieces of Legislation. Join the Michael J. Fox Foundation Policy Team on Wednesday, August 30 for a discussion on legislative wins, losses, and lessons learned along the way in state legislatures across the U.S. You can register for the webinar here. 

Kristi LaMonica’s Advocacy Journey: Insights for All

We can learn valuable lessons from Kristi LaMonica's adventures in advocacy.

Local Impact Matters: Living near Troy, New York's capital, taught Kristi the power of local advocacy. Change begins at home and radiates outward, creating tangible impact.

Resilience Brings Results: Despite delays, the National Plan to End Parkinson's Act's reintroduction in 2023 reflects the strength of persistence in advocacy.

Brevity Packs Punch: In her first speech to Senator Gillibrand's staffer, Kristi learned the might of concise, heartfelt messages to spur action.

Authenticity Over Perfection: Participating in a "Faces of Parkinson’s" discussion highlighted authenticity's power. Openness, not challenges, strengthens advocacy.

Inclusion is Vital: Advocating for the entire Parkinson's community, especially young onset patients, ensures equitable attention and boosts advocacy.

Stories Leave Impact: Sharing personal experiences, from accessing disability support to women's research gaps, enriches advocacy conversations.

Diverse Strategies Succeed: Engaging with officials in various contexts underscores the versatility of advocacy approaches.

Seize Opportunities: Amid personal challenges, speaking for a state registry showcased authenticity's resonance.

Collaboration Amplifies: Working with PD Avengers and Michael J. Fox Foundation emphasizes collective advocacy strength.

Incremental Steps Matter: State senate bill success proves small actions accumulate to significant change.

As Kristi LaMonica PhD. readies for Senator Schumer's staff discussion, her journey underscores every voice's importance and the impact of any contribution, no matter its size. Authenticity, seizing moments, and collaboration fuel her impactful advocacy.

Suggested Reading: Big wins and Next Steps in State Advocacy

Global Bonds and Personal Growth: Reflections on the World Parkinson Congress 2023

by Tim Hague Sr.

Panelists on Activism and Advocacy at WPC2023 in Barcelona, Left to Right, Maria de Leon, Sharon Krischer “Twitchy Woman”, Larry Gifford, Tim Hague Sr., Omotola Thomas, Fulvio Capitanio, Sara Riggare — not shown Richelle Flannigan .

My first World Parkinson Congress was back in 2013 square on the heels of the momentous event of my year; my and my son’s win of The Amazing Race Canada. I tell you this to help you understand why I remember almost nothing of that congress except the people. You see my head was already in a completely overwhelmed state and the congress was a dizzying, bombardment of information and all things Parkinson’s from around the globe. I knew nothing of this event before attending. All I really knew when I arrived was that I would be speaking on the main stage for five minutes to some three thousand folks with connections to PD.

Third from left is Eli Pollard, Executive Director of World Parkinson Congress

That event and those five minutes changed my life.

My doctor and his team were there which totally surprised me as I had no idea why they would all be at the same conference as patients. Eli Pollard (of course!) left a lasting impression as this super woman who managed to put on a massive event like this nigh on single hand idly. Now, after four such events I remain mesmerized by her super human talents! There was Bob Kuhn, fellow PWP and of Parky the raccoon fame, who shared the stage with me that year. There was Jillian Carson physiotherapist, advocate and founder of the Parkinson Wellness Project out in Victoria, British Columbia, Canada. And so many more that could and should be remembered if time and space allowed.

My point here is that it’s always about the people. This congress it was about the friends, yes friends, from all over the globe whom I do believe I could drop in for a beer or a coffee should I have the good fortune to be in their country. Countries like India, Uganda, United Kingdom, France, across the USA, Canada, Norway, Germany, Nigeria, New Zealand, Australia, Ireland, Spain, South Africa, Scotland, Japan and, well, I think you get the picture. These many and varied people have inspired me, humbled me and provided the context forme to see and better understand this disease. Ultimately, they help me live better for having known them and a bit of their journey with PD.

There’s a little pizza commercial that says what makes their particular pizza so special is that it’s “all about the sauce”. In this case “it’s all about the people” it’s the incredible people I’ve met over these past twelve years that will keep me coming back again and again for as long as I am able. If we missed each other in Barcelona let’s make sure we do that coffee in, well, wherever next time is! I’ll look forward to hearing where the next congress will be and to seeing you there.

Live Your Best!

Tim

More Than Support: A Sibling's Transformation at the #WPC2023

Dave and Rob Warner in Barcelona

My name is Dave Warner, I don’t have Parkinson’s disease.  I accompanied my brother Rob, to Barcelona, who has Early-Onset Parkinson’s Disease.  I was there for three reasons.  First, to provide assistance to my brother, if he needed it – he didn’t need it much at all. Second, to learn what I can about the research, treatments, and care strategies that appear to be helpful.  Lastly, I just love spending time with my brother.  We have been close all our lives and I always love being with him.  

I was so impressed with the strength of character, humor and genuine kindness of the many people I met there.  I was pleasantly surprised with the level of candor I observed.  There seems to be a general open agreement that having Parkinson’s just plain sucks!   But with that, I observed a general determined optimism to live life as best as possible anyway.  There is little, if any, desire to receive pity; but there is a growing sense of urgency, bordering on impatience, to meaningfully address this disease on the national and world level.

I appreciated the urgency that I sensed among the researchers and physicians regarding efforts to address causes, improve treatments, and find cures.  I was also concerned when I see the community appear to latch on to singular answers.   It is important that we not let our hunger for a solution eliminate our responsibility to rigorously assess alternate paths of progress.  

My favorite speaker was Connie Phinney.  Her raw honesty about the challenges of caregiving (and strategies to address them) touched my heart;  and clarified for me how I can help my brother and sister-in-law.  

Most importantly, to me, and I don’t know exactly why or how, the overall experience changed me personally.  It made me more informed, with a desire to be more engaged.  I cried at the conclusion of the closing ceremonies.  Attending WPC2023 was not just something I did to support my brother.  The experience blessed me personally far more than I expected or even hoped.  

Using Storytelling and Improv to End Parkinson’s Disease

Robert Cochrane, PhD
YAX CEO, Founder

This engaging online course, designed specifically for individuals with Parkinson's, employs the framework of Joseph Campbell's Hero’s Journey and the narrative inspiration of The Shawshank Redemption. Together, they serve as a creative guide to help you explore and articulate your personal story.

Day One: The Parkinson's Prison & The Hero's Journey to Escape

In this powerful new evidence-based class, developed in a PhD study, people with, affected by and serving the  PD community, will explore, write and share their stories from the perspective of feeling imprisoned by PD. We will use Joseph Campbell's Hero’s Journey and The Shawshank Redemption to guide us in a 16-week online program. What stories are keeping you locked in? Find more information and register here.

Here’s the link to the Day One page More Information

Heroism Science: An Interdisciplinary Journal Robert’s Abrstract