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

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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.

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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.

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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.

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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.

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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

Steeping Hope: PDTEA's Journey from Argentina to Parkinson's Relief

Embark on a remarkable exploration of PDTEA, a specially blended tea that began as a chance discovery on a cycling path in Argentina. Combining ten purposeful ingredients, each aimed at alleviating Parkinson's symptoms, this brew is gaining accolades from those who have experienced its benefits. Learn how PDTEA's creator, Lloyd Taylor, is sharing this innovative solution with others and supporting the broader mission to end Parkinson's through a partnership with the Michael J. Fox Foundation.

PDTEA – Every drop helps.

In the northeast corner of Argentina, there is a cycling path that winds its way into the high hills. The surface is hard packed, but uneven. The heat of the mid-day sun is relentless although the landscape is lush, and the vistas are rewarding.

In the summer of 2022, a friend of mine was on this path, part way into a multi-week cycling trip. He was battling fatigue, elevation, temperature, and the symptoms of Parkinson’s disease. Stopping at a rest hut, he was served a hot mug of local tea. The taste was unpleasant, but he felt energized. He began seeking out the tea. He began feeling better and his symptoms improved.

My wife and I saw him the week he returned to Canada, and we were both struck by how good he looked. I asked what was new in his routine, and his answer was immediate... the tea. I started drinking it myself and felt my own PD symptoms ease. Intrigued, I began doing research and found medical evidence supporting what I was experiencing. I was excited, but there were a few problems. The format of the tea made it awkward to consume. The bitter taste wasn’t growing on me, and our small Argentinian supply was dwindling.

I looked for a solution and found it in my own backyard. My neighbour of twenty years is one of Canada’s leading tea merchants. Once I explained the effect the tea was having on my Parkinson’s, he jumped into the project. His team prepared a dozen blends for testing. We nicknamed the project Parkinson’s Disease tea – PDTEA for short.

PDTEA contains ten all-natural, organic ingredients, each one focused on a symptom of Parkinson’s, Dopamine production, cognitive functions, anxiety, energy, inflammation, and digestion. It’s rich in vitamins, minerals, and antioxidants. It’s packaged in biodegradable sachets and blended in a state-of-the-art facility powered by renewable energy. And I’m happy to say, it tastes nice. It has an earthy flavour that provides me comfort all on its own.

I’ve shared PDTEA with my local Parkinson’s community and the response has been overwhelming. 

PDTEA clears the fog. – Peter

I’ve added PDTEA to my routine. I feel great. Even my handwriting has improved. – Rick

PDTEA gives me an energy boost without jitters or crash. I love it. – Steve

A friend introduced me to PDTEA. From the first sip I was hooked. The taste is great, and it has a positive effect on my PD symptoms. – Jim

PDTEA relaxes me and helps with stiffness. – Sharon

I created PDTEA for my own consumption and my immediate Parkinson’s community. But through our partnership with PDAvengers we can do much more. I encourage you to visit PDTEA.com and add your name to our waitlist to experience the benefits for yourself.

We also realize that along with bringing relief to people living with Parkinson’s, we can help advance the search for a cure. We are excited to announce proceeds from PDTEA are directed to the Michael J. Fox Foundation through Team Fox.

As a busy entrepreneur, husband and father of three, I consider myself a fortunate person. I can say that in some respects, the disease has given me more than it has taken. The disease has introduced me to a community of people who find a way to live their best lives despite the obstacle of Parkinson’s. The course of their lives has been altered by the disease and they have chosen to find new paths; sometimes better than the ones they were on.

Being diagnosed with Parkinson’s altered my own life path and I have relied on the Parkinson’s community for support. PDTEA is my opportunity to give back. I intend to use my energy and my experience to bring as much relief as I can.

Please join me.

Every drop helps.

Lloyd Taylor

Founder and Head Tea Drinker
Diagnosed with Parkinson's 2020

Prescription for Action; From Passivity to Progress

Since 2010, the Michael J Fox Foundation has been running the Parkinson's Progressive Markers Initiative, and after thirteen years of pokes, prods, tests and spinal taps, scientists have discovered a biomarker in spinal fluid for Parkinson's. Without the selflessness of more than one-thousand volunteers, it would not have been possible.

Volunteers in the Parkinson's community are remarkable people who embody generosity, compassion, and kindness by giving their time, skills, body fluids and big hearts to make a difference in the lives of people with Parkinson's disease.

In March 2020, the book Ending Parkinson’s Disease: A Prescription for Action was released. The book offers a clear pathway forward. The first of 25 action items is to ban Paraquat, the second is to ban Trichlorethylene.

“I am only one, but I am one. I can’t do everything, but I can do something. The something I ought to do, I can do. And by the grace of God, I will.”

— Edward Everett Hale, author & chaplain

Thanks to volunteer advocates who wrote the White House in 2021 during the PD Avengers and Ending Parkinson’s Disease book authors “red letter campaign,” change is underway. 50,000 people asked the Biden-Harris Administration’s EPA to ban the insecticide Chlorpyrifos (read the Intercept investigation), the herbicide Paraquat (read The Guardian investigation) and the toxic chemical Trichlorethylene (read investigation by Newsday).

Since that campaign, the use of Chlorpyrifos has been banned on all edible crops. Scientific research has been documenting the harms of chlorpyrifos for decades. Yet it was the lived experience, community expertise, and community organizing of farmworkers and their families that galvanized momentum at the local, regional, and state levels that led to the federal chlorpyrifos ban. For decades, chlorpyrifos has been widely sprayed on Washington apples, pears, Christmas trees and other crops including soybeans, fruit and nut trees, broccoli, and cauliflower.

Due in part to years of effort by Parkinson’s advocates nationwide — including amassing more than 100,000 signatures on a petition to the Environmental Protection Agency (EPA) and logging tens of thousands of emails and phone calls to Congress — the EPA has agreed to reconsider the evidence that Paraquat causes brain damage and other harm. This could lead to the chemical being banned in the United States, as it already has been in more than 50 other countries. Additionally, The Michael J. Fox Foundation has started to petition individual states to ban Paraquat. And several groups, including the Michael J. Fox Foundation for Parkinson's Research, filed a lawsuit against the US Environmental Protection Agency (EPA) over its decision to renew approval for the herbicide paraquat.

Trichlorethylene (TCE) has been deemed an unreasonable risk of injury to human health by the U.S. EPA. The main use of trichloroethylene is in the vapor degreasing of metal parts. TCE is also used as an extraction solvent for greases, oils, fats, waxes, and tars, a chemical intermediate in the production of other chemicals, and as a refrigerant. Trichloroethylene is used in consumer products such as typewriter correction fluids, paint removers/strippers, adhesives, spot removers, and rug-cleaning fluids. Trichloroethylene was used in the past as a general anesthetic, as an inhaled obstetrical analgesic in millions of patients, When it was first widely produced in the 1920s, trichloroethylene's major use was to extract vegetable oils from plant materials such as soy, coconut, and palm. Other uses in the food industry included coffee decaffeination and the preparation of flavoring extracts from hops and spices. It has also been used for removing residual water in the production of 100% ethanol.

Of the 25 action items outlined in the Ending Parkinson’s Disease book there is much work to be done, however there seems be some movement in most of the 25 action items. What will you tackle next?

GREEN THUMB = FORWARD MOMENTUM | YELLOW THUMB = NO MOVEMENT | RED THUMB = BACKWARDS MOMENTUM

PREVENT THE DIESEASE

Ban Paraquat and other toxic herbicides and pesticides. Paraquat has been banned in over 50 countries, with nearly 20 additional countries joining the list since publishing the book. In 2023, Canada became the latest country to ban Paraquat when the manufacturer discontinued the last remaining product containing Paraquat permitted for distribution. As a result, Paraquat products are no longer in use in Canada.

Ban Trichlorethylene. Two states, Minnesota and New York, have banned TCE since the publication of the book. In Europe, Trichlorethylene (TRI, Trike) has been classified as a class 2 carcinogen since 2016 and has been banned, with a few exceptions. The largest global consumer of TCE, accounting for almost half of the annual consumption of 151 kilo tons, is East Asia, mainly China.

Accelerate the clean up of contaminated sites. Cleanup durations have increased over time. In 1984, it took 2.4 years; by 1996, it was 10.6 years. The US National Priorities List had 1,346 contaminated sites in 2018, reducing slightly to 1,336 by March 2023. The Biden-Harris Administration invested $3.5 billion in the Superfund Remedial Program, restored Superfund chemical excise taxes, and updated the list biannually, making it one of the most significant investments in US history to address legacy pollution.

Use a water filter. To safeguard your health while we wait for water clean-up, consider using a water filter. Carbon filters that can be attached to your faucets or water pitchers are a cost-effective option, but it's important to replace them regularly. Keep in mind that while they can help remove some contaminants, they may not extract every chemical from the water. Helpful resources: EPA Safe Drinking Water EWG’s Tap Water Database

Advocate for the CDC’s National Neurological Conditions Surveillance System. The CDC’s timeline was disrupted by COVID, but is finishing stage 2 of 3. It has been working on establishing and strengthening partnerships with professional and non-profit organizations to ensure representation of the needs and perspectives of PD and MS patients and caregivers. They have also collaborated with various organizations to catalog existing registries and data collection efforts that could be involved in research and improving prevention and patient care based on NNCSS findings. The CDC has also expanded its scientific expertise by engaging with experts from national institutes and establishing fellowship mechanisms to secure specialist expertise for PD and MS. The CDC has produced surveillance estimates for MS and PD by assessing the state of science and selecting the most useful and accurate definitions for identifying cases of PD and MS. They have also proposed approaches for maintaining and extending NNCSS to include surveillance for other neurological conditions. Explore the CDC’s NNCSS website here.

***Last Updated on April 19, 2023***

• Protect Coworkers.

• Eat like the Greeks.

• Minimize your consumption of pesticides.

• Sweat.

• Avoid activities with high risk of head trauma.

ADVOCATE FOR ADDITIONAL RESOURCES AND POLICY CHANGES

• Increase NIH funding for Parkinson’s disease.

• Listen up, Big Pharma — this is a great business opportunity.

• Donate to organizations that invest in important research and care.

• Be loud.

• Organize.

CARE FOR ALL THOSE WHO ARE AFFECTED

• Train more specialists and educate clinicians.

• Expand access to care.

• Lobby to change insurance and Medicare.

• Enable individuals with Parkinson’s to live at home.

• Use technology to increase access to care.

TREAT PARKINSON’S DISEASE WITH EFFECTIVE THERAPIES

• Make dopamine-replacement therapy more widely available.

• Participate in clinical trials.

• Take research studies to participants.

• Study people with early disease symptoms and those who are at greater risk.

• Provide reasonable price of Parkinson’s drugs.

---

VIDEO: Is Trichlorethylene an
Invisible Cause of Parkinson’s?

Professor Ray Dorsey, MD
and Larry Gifford, PD Avengers

Standing Strong Against PD with Incredible Force!

1.1 Million Sit to Stands!

On World Parkinson's Day, participants from 13 countries joined the "Stand up to Parkinson's" campaign to collectively complete 1,102,058 sit-to-stands over a 24-hour period, surpassing their goal of 1,000,000. The sheer number of people involved and the magnitude of the accomplishment is something to be celebrated and acknowledged.

Assuming the sit-to-stands were completed evenly over 24 hours, we can calculate the average wattage produced by the group. If each sit-to-stand burns around 4 calories, then the group would have burned around 4,408,232 calories in total, which is equivalent to 4,408 kilocalories or 18,426 kilojoules of energy. To put this into perspective, this amount of energy is roughly equivalent to the energy required to power an average 60-watt light bulb for 307 hours, or 12.8 days. It is also equivalent to

1. Boiling 4,400 cups of tea

2. Charging a smartphone 12,000 times

3. Running 4.4 marathons

4. Biking for 550 kilometers

But what if all that energy was used at the same time? The amount of power that would be generated is truly awe-inspiring. A power jolt of 18,426 kilojoules is equivalent to the energy released by detonating approximately 4.4 pounds (2 kilograms) of TNT.

It's also equivalent to the kinetic energy of a car traveling at 100 miles per hour (160 kilometers per hour) or the potential energy stored in a 440-pound (200-kilogram) object, for instance an adult lion or a motorcycle, lifted to a height of 87.5 feet (27 meters) above the ground.

The Stand up to Parkinson's campaign is a testament to the power of collective effort and determination. It's also a reminder of the incredible amount of energy our bodies are capable of producing through physical activity. Let's celebrate this accomplishment and continue to push ourselves to new heights.

It's also equivalent to the kinetic energy of a car traveling at 100 miles per hour (160 kilometers per hour) or the potential energy stored in a 440-pound (200-kilogram) object, for instance an adult lion or a motorcycle, lifted to a height of 87.5 feet (27 meters) above the ground.

The Stand up to Parkinson's campaign is a testament to the power of collective effort and determination. It's also a reminder of the incredible amount of energy our bodies are capable of producing through physical activity. Let's celebrate this accomplishment and continue to push ourselves to new heights.

---

Nakagata, T., Yamada, Y., Hatamoto, Y., & Naito, H. (2019). Energy expenditure of a single sit-to-stand movement with slow versus normal speed using the different frequency accumulation method. Medicina (Kaunas), 55(3), 77. https://doi.org/10.3390/medicina55030077

PARKINSON’S DISEASE: THE FASTEST GROWING SUPPORTING CHARACTER IN HOLLYWOOD

No Sign of it “Shrinking” from the Spotlight

Credit: Netflix, AppleTV+, Amazon Studios, 20th Century Fox, FilmNation Entertainment, 30West, Imperative Entertainment, 3 Arts Entertainment, Kaling International, CBS, Nano Chameleon, Automatik Entertainment, Scott Free Productions, Netflix International Pictures, Flying Studio Pictures, Panic Pictures, Blue Light, World Productions, ITV, Fox 2000 Pictures, Regency Enterprises, New Regency, Stuber Pictures, Bedford Falls Productions, Dune Entertainment, 3 Chance Productions, Corporate Mandate, Doozer Productions, Warner Bros. Television

By Larry Gifford

April 11, 2023

In recent years, Parkinson's disease (PD) has become a prominent feature in Hollywood, with many actors playing characters with the disease on both the big and small screens. From movies like Late Night and Mank, to shows such as Shrinking, Kaleidoscope, and The Good Wife, actors such as Harrison Ford, John Lithgow, and Jamie McShane have taken on the challenging roles of characters with PD.

Attitudes on Representation on TV Study, April 2022 © 2023 The Nielsen Company (US) All Rights Reserved

What is the reason for the sudden increase in PD representation in Hollywood?

PD has become the darling of Tinseltown due to the disease itself, which is currently the fastest growing neurological disease in the world, affecting over ten million people globally. It is the second most common age-related neurodegenerative condition worldwide, just behind Alzheimer's disease. Recent research in North America has even revealed that PD is 50% more prevalent than previously thought.

While PD is a rising supporting character in Hollywood, its prevalence in real life is becoming more and more pronounced. This has led to increased awareness and support for Parkinson's research and advocacy groups. Earlier this year, actor Ryan Reynolds, whose father died from complications of Parkinson’s, lent support for the AppleTV+ debut of Michael J. Fox’s documentary about his career and Parkinson’s, Still: A Michael J. Fox Movie.

I lost my dad to Parkinson’s so besides @realmikefox being a friend, role model, generational talent and Canadian, I cannot wait to see ‘Still’ on @AppleTVPlus. It’ll soon reside on the MJF anthology DVD shelf in my heart. Btw, The Frighteners is criminally underrated. pic.twitter.com/mMsBndjTAP

— Ryan Reynolds (@VancityReynolds) January 21, 2023

Getting it Right: The Challenge of Portraying Parkinson's

Portraying Parkinson’s in a respectful and believable way is a challenge. How does a show or an actor properly portray someone with a degenerative, progressive, brain disease? It's not easy.

When Grey’s Anatomy performed a breakthrough stem-cell procedure and “cured” Parkinson’s in April 2022, many people with Parkinson’s thought that in fact this was a cure. However, WebMD was among those who quickly pointed out that this was not the case.

Finding a fictional cure for Parkinson’s, no matter how possible in the long term, could be a dose of hope we all need. However, by creating a fictitious cure for PD it may only confuse the general public and possibly negatively impact the urgent need of research funds from public and private sources.

Credit: © World Productions

Bringing authenticity to the portrayal of Parkinson’s disease was of utmost importance to Irish actor Aidan Turner and the production team of the new television drama series The Suspect. Turner plays the lead character, Dr Joe O’Loughlin, a clinical psychologist who is diagnosed with early onset Parkinson’s. To accurately depict the condition on camera, Turner and the production team consulted with the charity Parkinson’s UK, which put them in touch with Drew Hallam, a musician diagnosed with Parkinson’s in 2018. Hallam’s input was critical in guiding the team on how to display the symptoms of Parkinson’s on screen while keeping them realistic.

The inclusion of a character with Parkinson’s in the hit Netflix series Kaleidoscope has drawn attention from the Parkinson’s community. The New York Times gushes, “Giancarlo Esposito’s performance in Kaleidoscope (as Leo Pap) derives much of its power from its humility, especially once (his character) breaks out of prison. We see him become increasingly frail, confronting his disease and a life full of regret.”

Credit: Netflix

As Kaleidoscope continues, we can see that Esposito really honed in on some of the true-to-life symptoms that come with Parkinson's disease. The hand tremors, spasms, slowed movement, and difficulty walking were all portrayed quite accurately. However, I can't help but point out that there's one glaring inaccuracy in the way Parkinson's is depicted in the show.

When sharing his diagnosis with a colleague, the character with Parkinson’s says he is unsure if he has “2 years or 10 years to live.” While Parkinson’s is incurable, it is not considered to be a terminal illness. The concern is the potential negative impact it can have on people's understanding of the condition. With someone being diagnosed with Parkinson’s approximately every six minutes, we need to be sure information about Parkinson’s on TV and in Movies is reflective of reality.

It is a surprising imperfection as Esposito seems to fully embrace the characters struggle, describing his character this way, “He has the brain skill, but the body’s going. In a way, that’s the tragedy of our lives. As we get older, we get more delicate and we get more fragile. I still have the brain and the sense of a younger man, but to think, ‘I have to be careful stepping off that curb,’ it’s a bitch.”

The Importance of Inclusion

There are some great examples of people with disabilities and chronic illness playing characters with disabilities and chronic illness. Some great examples include Michael J. Fox playing Louis Canning, who has Parkinson’s, on The Good Wife, RJ Mitte, who has cerebral palsy, playing Walter White Jr. who also has CP in Breaking Bad, and Lauren Potter, who has Down’s syndrome, playing the school’s head cheerleader in Glee.

Regardless, these examples are hard to come by. A recent Nielsen study completed in 2021 found that 95% of disabled parts are performed by able-bodied actors.

Attitudes on Representation on TV Study, April 2022 © 2023 The Nielsen Company (US) All Rights Reserved

When actors without disabilities play characters with disabilities, it is commonly referred to as "cripping up" by critics. The term originally referred to able-bodied actors pretending to have physical disabilities, but now it also encompasses non-disabled actors playing roles with mental illnesses or intellectual disabilities, as well as neurotypical actors playing characters on the autism spectrum.

Interestingly, actors who portray characters with disabilities have a higher chance of winning Academy Awards. Over the past 35 years, almost half of the Best Actor and Best Actress winners have played characters with physical or emotional disabilities. With this in mind, 80 members of the entertainment industry wrote an open letter in 2021, urging for greater prioritization of disability representation in diversity and inclusion plans.

Although it's encouraging to see more attention being given to disability representation, it's important to ensure that the portrayals are respectful and accurate. This is especially important for conditions like Parkinson's disease, which is increasingly depicted in film and television. To achieve authenticity, it is necessary for actors to consult with people who have firsthand experience with the condition or to even consider hiring an actor with Parkinson's for the role.

Starting in 2024, the Academy of Motion Arts and Picture Sciences will introduce new standards for representation that films must meet to qualify for an Oscar in the Best Picture category. These standards include On-Screen Representation, Creative Leadership, Industry Access and Opportunities, and Audience Development.

Disabled characters are often portrayed in two problematic ways: as inspiring heroes who have "overcome" their disability or as objects of pity or ridicule. By prioritizing accurate and respectful disability representation, Hollywood can promote awareness and support for research and advocacy groups while breaking down harmful stereotypes and biases.

---

ACTORS WHO HAVE PORTRAYED CHARACTERS WITH PARKINSON’S

Still: A Michael J. Fox Movie
Streaming May 12, 2023 AppleTV+

1. Michael J. Fox* - Louis Canning, The Good Wife (2010-2016)

2. Harrison Ford - Dr. Richard Walker, Shrinking (2022)

3. John Lithgow - Walter, Late Night (2019)

4. Barbara Hershey - Judith, The Manor (2021)

5. Aidan Turner -Dr Joe O'Loughlin, The Suspect (2022)

6. Giancarlo Esposito - Leo Pap, Kaleidoscope (2021)

7. Eddie Marsan - Terry Donovan, Ray Donovan (2013-2020)

8. Jamie McShane - Shelly Metcalf, Mank (2020)

9. Anne Hathaway - Maggie Murdock, Love and Other Drugs (2010)

10. Alan Alda* - Bert Spitz, Marriage Story (2019)

*Diagnosed with Parkinson’s

PD Avengers Member Spotlight

Ellen Bookman

When were you/loved one first diagnosed?

The journey began January 29, 2018.  I was 52. . 

Can you tell the story of your path to diagnosis?

Lee, my husband of 33 years, and I had just started to kayak.  We both loved everything about the experience and would try to as often as possible. I started to notice that my left foot was bothering me. If asked, I would have said that “it felt crampy. My doctor told me to cut down on Splenda.”  

I walked out and thought nothing of it - for three years.

What I thought was nothing turned out to be dystonia. I also had other issues all emanating on my left side.  Nobody put two and two together until a random yearly physical exam with my GP.  I, once again, tried to explain my foot issue. He asked me to make an appointment with the neurologist in the practice.                   . 

I made the appointment and met a young, smart and empathetic doctor who delicately told us that I had Parkinson’s. She wanted me to get a second opinion.  I ended up at one of the country’s top Neurology Centers.  It didn’t matter because this doctor did not have a shred of  empathy.  Lee and I knew we had made a big mistake.     

Why did you want to become a PD Avenger?

Larry Gifford and I met officially when I was a guest on  “When Life Gives You Parkinson’s.” He asked thought provoking questions about my YOPD diagnosis. Because of Larry, I was able to speak about the diagnosis. I got my voice back.  When Larry told me about PD Avengers, I jumped in with both feet. I knew this was going to be big,  

What do you see is your superpower as a PD Avenger? 

I am a writer by trade and always use definitions to make a point. The definition states - your unique force or contribution – something that gets the best out of you.  

My superpower is the ability to put people at ease, so they, too, can get their voice back.

What is something you wish people knew about Parkinson’s Disease?

Mental wellness is as important as the medical management of the disease. It was never mentioned to me nor did she tell me that stress and anxiety exacerbate symptoms. Had the doctor told me this, I would have immediately sought treatment. Instead, I sat on the couch anxious and depressed for three months. 

What do you like to do for fun?

I decided that I was going to only do those things that give me joy. My dogs. I am training for my 2nd horse show - number one on my bucket list. I started playing pickleball. I box in a Parkinson’s group with people who get me.  Travel. Concerts. The outdoors. 

What advice would you give to someone who is newly diagnosed?

1. Only go to reputable Parkinson’s websites.

2. Advocate for yourself. 

3. If you don’t click with your doctor, find a new one.

4. Ask questions.   

5. Take your Mental Wellness seriously. 

What do you wish you were told when you were diagnosed?

I wish she would have given me more than a pamphlet

I wish she would have told me  about the importance of taking care of my mental wellness.

I wish I was told it will be alright. We will work through this together. 

Is there anything else you would like to share with our community?

Learn about the disease but know that you will not have all of the symptoms. Let knowledge guide you and only from reputable resources. Don’t freak out. Get involved. Help others. Advocate for yourself. Become a mentor.

Do you have any PD hacks to share?

1. Allow yourself to have a bad day,  Then, get up.

2. Exercise. Exercise. Exercise.

3. Do things you love.

4. Understand and acknowledge the role your care partner plays in your life.

Six Action Steps to Address Global Disparities in Parkinson Disease

A World Health Organization Priority

Publication Alert! PD Avengers help write article for JAMA

WEBINAR: WHO and PD Avengers Founders
Larry Gifford and Sania Mathur (click image)

3 Minute Test to Diagnose Parkinson’s Disease

Joy Milne is known the world over as the woman who can smell Parkinson’s. PD Avengers President Larry Gifford talked with her and Professor Perdita Barron, the Director of the Michael Barber Centre for Collaborative Mass Spectrometry at The University of Manchester, who’ve been working side by side hand to nose for years identifying what exactly it is that Joy smells and if it can be used as a way to diagnose Parkinson’s. A paper released today, just after midnight September 7, 2022 (British Summer Time) The charities Parkinson’s UK and the Michael J. Fox Foundation as well as the Royal Society funded this research led by the University of Manchester, which has studied the sebum from people with and without Parkinson’s. Our work is on-going, and our trial has now recruited over 2000 patients.

Read the Research.

Listen to the Podcast.

PD Avengers Member Spotlight

Orlando Jack

When were you/loved one first diagnosed? 

2018

Can you tell the story of your path to diagnosis? 

My left foot big toe started twitching. Consequently, I had an MRI which showed nothing. Then a  ‘DatScan’ which indicated I had Parkinson Disease. I started taking Sinemet immediately.

Why did you want to become a PD Avenger? 

To not only educate myself, but to educate others.
What do you see is your superpower as a PD Avenger? 

My ability to communicate.

What is something you wish people knew about Parkinson’s Disease?

The emotional and psychological component of this disease. 

What do you like to do for fun?

Musician, Photographer and to raise money for Parkinson’s research

Advisory Board Member, Parkinson Association of Central Florida (www.parkinsoncf.org). 

What advice would you give to someone who is newly diagnosed?

Never stop educating yourself and stay healthy via mental and physical exercise.

Lastly, educate others.

What do you wish you were told when you were diagnosed?

I was fortunate, after I moved to Orlando FL. because I found a very competent MDS Neurologist who is also a member of our association. Dr. Anwar Ahmed is aso very communicative in person and through our ‘Portal.

Is there anything else you would like to share with our community?

Stay Active Mentally and Physically to help fight to slow down the progression.

Do you have any PD advice?

As a member of a large social network for PwP’s many seem to accept their malady and don’t seem to want to fight for a cure. That ‘Doer’ attitude is missing. It’s frustrating for me because I’ve never been a quitter whether in sports or life. I wish these PwP’s would be ‘Doers’ also.

Today, I’m running my own campaign to get PwP’s to contact their state congressman via the Michael J. Fox Foundation at  https://michaeljfox.quorum.us/campaign/42447/ !

PD Avengers Member Spotlight

Diana Steiner

When was your loved one first diagnosed?

My father-in-law was diagnosed in his late 70’s, almost 10 years ago.

Can you tell the story of his path to diagnosis?

Diagnosis came after much investigation into significant, unexplained weight loss. It took quite some time to get from “undetermined stomach problems” to Parkinson’s. The absence of two hallmark symptoms, tremor and loss of smell (it was lost years ago as a result of an accident), made the diagnosis a surprise for everyone!

Why did you want to become a PD Avenger?

To encourage advocacy and education. The importance of teamwork must be promoted. Many, including PwP, care partners, medical professionals and government officials do not recognize the significant positive effect a good team has on wellbeing. Until Parkinson’s is eradicated, we need to work to improve the quality of life for everyone touched by Parkinson’s!

What do you see is your superpower as a PD Avenger?

I’m a planner by personality and career but my attention to detail and determination are my superpowers. A plan assists in determining progress and evaluating if adjustments are warranted. The power of a plan is diminished if there isn’t someone with the determination to monitor and see it through!

What is something you wish people knew about Parkinson’s Disease?

Not everyone with Parkinson’s has tremor and not everyone with tremor has Parkinson’s. Essential tremor runs in my mom’s family, so while people assume she has Parkinson’s, they don’t recognize it in my father-in-law.

What do you like to do for fun?

I love to spend time with my husband as he experiments in the kitchen and to escape in a good book. We also love to travel and experience new places. Spending time outdoors, in the quiet, is always rejuvenating.

What advice would you give to the family of someone who is newly diagnosed?

Advocate for your loved one. Ask for and search out as much information as you can, from reputable sources. Do not go down internet rabbit holes! Help your loved one build a support team. This can include support groups, other PwP, and various health care professionals. This is especially important for those diagnosed later in life, rural residents and those who are not technologically savvy as they may experience additional barriers to obtaining information and care. 

What do you wish you were told when you were diagnosed?

Share the news of your diagnosis, don’t hide it! Join a support group or find someone on the Parkinson’s journey to talk to. Reach out for and accept support; this is a life-changing diagnosis but being surrounded by a team will make it easier for everyone.

Is there anything else you would like to share with our community?

Communication is essential! Talking about PD is part of, and will improve the journey.

Join the PD Avengers Strava and Zwift Clubs!

By Rob Warner

Exciting news! Now you can exercise and promote the PD Avengers.  You can now be an advocate simply by exercising under the PD Avengers name.  How can I do this you may ask? By tracking your exercise on Strava and joining other PD Avengers on the most popular indoor cycling/running app in the world on Zwift. We now have a PD Avengers club on each of these popular platforms! 

STRAVA

Strava is a free app you can download on Google Play or the App Store and it is free to join, Premium membership gives you more perks of course but you don’t need it to join the PD Avengers club.  Strava is an internet based company that allows people to track physical exercise while incorporating social network features. It is mostly used for cycling and running using Global Positioning System data. Although it is mostly used by cyclists and runners you can easily track dozens of other activities from alpine skiing to windsurfing.  Once you’ve established your free account you can click on the following link to go to the PD Avengers club page to sign up and start tracking your fitness along with other PD Avengers!

https://www.strava.com/clubs/pdavengers

I plan on adding challenges for our club to keep it fresh and create more excitement about the PD Avengers. No worries, the challenges won’t be crazy like riding 5000 miles in a month but will be more like riding for 4 hours in a month or similar type challenges.

ZWIFT

If you want to ride alongside and converse with your favorite PD Avenger 20 miles or 3000 miles away look no further than Zwift!  Zwift was chosen by cyclingweekly as the best 5indoor cycling app for riding with others and Outdoor magazine said, “Zwift [has] transformed indoor cycling” and, “has changed the way we run and ride”.

Zwift is a subscription based application that costs USD $14.99 per month. Zwift is a  multiplayer online cycling and running physical training program that enables users to interact, train, and compete in a virtual world. You can compete against others of your skill level, follow a training plan along with many other cool features that you will learn as you go along. The greatest part of Zwift for me is being able to ride with my brothers who live over 500 miles away and we can ride at our own pace but still stay together.  My non-Parkie brother is faster than my older brother and I but we can still hang with him via a cool feature from Zwift that “rubberbands” you together regardless of your pace.  

Zwift is a little more complicated to set up and you will need an indoor cycling setup, a laptop,iPad, or cell phone and probably a fan if you sweat as much as I do! 🥵It seriously makes indoor cycling fun and I am able to do it at my own pace, on my own schedule, and in any weather.  

I have started a Zwift club for PD Avengers as well. If you are currently a Zwifter and know how to find a club it is the PDAvenger club (all one word).  If you don’t have Zwift or need help finding the club please email me at rwpdavenger@gmail.com and I will walk you step by step through the process. Right now I plan on doing a PD Avenger’s ride every Thursday at 7:15 am Pacific or 3:15 pm GMT. Unfortunately, the club event software doesn’t allow you to “rubberband” yet but there is another way to do it so please email if you would like to participate in the PD Avengers ride on Thursdays.

I am a cyclist, definitely not a runner, but if there is a fellow zwifter runner who would like to volunteer to help people with Zwift and can sponsor a run on Zwift at least once a month I think that would be fun for runners. Please email me if interested.

The goal is to get as many members signed up on Zwift as possible in the next couple of months so we can hold some fun and massive events for Parkinson’s awareness month.  Let’s get out there and ride, run, walk, TOGETHER!

If you need assistance with getting setup with Strava or Zwift please email me, Rob Warner at rwpdavenger@gmail.com.  Use the email as well if you would like to participate in the Thursday rides.