PD AVENGERS MEMBER SPOTLIGHT

KRISTI LaMONICA

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

1. Slow down, take a deep breath, and stop trying to read everything on the internet.  Instead, go to the Davis Phinney Foundation (DPF) website and either download (everywhere) or order a print copy of The Every Victory Counts manual (US or Canada only). It is so easy to fall down the rabbit hole of information overload which could result in anxiety and fear. 

2.  Find a support system. PMD Alliance has weekly Zoom support groups and DPF also has Healthy Parkinson’s communities where you can find local resources in the US. For other countries, please reach out to your local PD charity.

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

At first I was going to say I wish I was told that hormones and menstrual cycles impact either the efficacy of medication, exacerbate symptoms, etc; but I’m not going to say that because asking questions led me to this amazing community. Instead, I wish I was told how every day with YOPD will be different—you never know what each day will bring.

When were you/loved one first diagnosed? 

Kristi with her two Border Collies.

My official diagnosis was in 2020, but the path to get there was far from linear.

Can you tell the story of your path to diagnosis?

My path to diagnosis was similar to a lot of other folks with Young Onset PD (YOPD). Like so many others, my story involves a limb, an ortho, and an almost surgery. I first noticed something was wrong in 2017 when I started having issues typing - my pinkie and ring finger on my left hand had a mind of their own and were not working in concert with my other fingers. 

They were either slow, or twitchy, or would just push down a random key. It was an adventure typing on a projected screen in meetings. I figured it was carpal tunnel and just kept pushing through. I’m a biology professor at a small college in upstate NY in the US, and a student was showing a video as an introduction to his presentation and the subject had PD and a tremor. I looked down at my hand and it was doing the exact same thing. 

I looked at my hand and thought “wow, I think I have PD”. I started to acquire some new, interesting movements when working out. When I’d put a barbell on my back for squats, the fingers on my left hand would start moving. When I would go to grab a heavy barbell for front squats, I’d have a vagal syncope episode where I’d almost pass out. Then my left elbow and left hip started to hurt. I finally made some doctor's appointments. 

A hip MRI showed a number of issues that needed attention, so we followed that path which led to surgery and physical therapy. All the while, my elbow just continued to hurt. Healing from the surgery was difficult. My hip flexor was constantly tight and painful and my gait never recovered. Fast forward 6 months, my elbow still hurt and I figured I should take care of that, so back to the ortho I went. 

After some X-rays, an EMG, and several discussions about surgery, resulted in my ortho saying I think you have Parkinson’s. That diagnosis had been bouncing around my brain for a few years, but hearing it said out loud was a shock. Lots of tears of frustration later, I was able to convince the movement disorder specialist to see me in two months instead of the seven they originally told me. Once I was finally able to see the specialist in the office, I was diagnosed within an hour. 

Looking back, I had prodromal symptoms since 2005 where I’d act out my dreams. I was in graduate school and worked with stem cells and I’d take care of cells in my sleep. I was doing science in my sleep.  It seemed funny and harmless at the time. I also have shoes going back to 2013, the left one is worn out on the inside where the little toe rubbed from clenching and cramping. In 2015, I started clenching my left hand all the time. I had so many symptoms along the way, but never connected the dots.

Why did you want to become a PD Avenger?

Kristi squatting with friends in her basement gym.

I became a PD Avenger because I need to be involved, I need to help make a difference, and I need to tell my story. We all need to tell our stories if we want to see advancements in future therapies.

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

My ability to keep everything ordered, organized, and on track and my ability to follow through are my superpowers. As a biology professor with some neuroscience background, I can easily read the literature and am able to translate the science and make it accessible to everyone.

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

I wish people knew how unpredictable it can be. One minute you can be on with your meds working, and the next minute you can be off. It can be frustrating and can result in picking and choosing events to attend or not attend. It’s not that I don’t want to go to everything, it’s that I physically can’t.

What do you like to do for fun?

I like to hike with my best friend, her family, and my dogs. Garden and cook when I’m feeling good. Workout in my basement gym. Spending time with my family, especially my mom.  Hanging out with my husband and watching old episodes of Top Gear and newer episodes of the Grand Tour.

Planning for Prevention of Parkinson’s

A Trial Design Forum - REGISTRATION EXTENDED

IN-PERSON REGISTRATION & HOTEL DEADLINE EXTENDED TO SEPTEMBER 7th!

Join us at the Liberty Hotel in Boston, MA or online from Sunday, October 2nd to Monday, October 3rd to explore and help shape designs for the first therapeutic trials to pursue Parkinson's disease prevention. View the agenda updated with new advocacy, regulatory, and industry perspectives.

The deadline to register to attend in person is now September 7, 2022. Virtual registration is open until October 2, 2022.

Questions? Email Katherine Callahan at kfcallahan@mgh.harvard.edu

PD AVENGERS MEMBER SPOTLIGHT

ROB WARNER

PD Avengers Member Spotlight - Getting to know us!

Each month we will be posting full blog posts about each member of the newly formed newsletter team! This month, we will be getting to know Rob Warner.

Picture of Rob Warner on his bike in front of an Air Force Jet

When were you/loved one first diagnosed?

My name is Rob Warner and I was diagnosed with Early Onset Parkinson’s Disease in 2007 when I was 33 years old. 

Can you tell the story of your path to diagnosis? 

My initial symptoms were dystonia in my left arm, no arm swing and slowness of movement, which occurred mostly in my hands.  I wasn’t  too worried about these symptoms because I had crashed my bike during a recent triathlon and thought I had just pinched a nerve. Initially, The doctor referred me to an ALS specialist (Lou Gherig’s Disease). This came as quite a shock because I had a wife and four kids at the time (ages seven, four, two, and four months old). I had to wait four months for this appointment and it was a very emotional and scary time for me since I knew there was a chance that I might never get to see my children grow up or have many more years with my wife. Fortunately during the appointment, the doctor confirmed that my symptoms were not related to ALS and referred me to a Movement Disorder Neurologist. I did not get my diagnosis with Parkinson’s Disease until a few months later, but at that appointment, I remember telling my wife as we left the office, "phew, it's just Parkinson's!” The misdiagnosis from the first doctor was bitter sweet. Even though it initially gave me so much stress, it also gave me the perspective that even though Parkinson’s is a crappy disease and will alter how I do things, at least I’ve seen my kids grow up and I’ll be with my family for a long time.

Once diagnosed, with the help of medication and exercise, my symptoms stabilized which allowed me to continue doing triathlons which I had grown to love, as well as work as a flight test engineer at Edwards AFB for 15 years until just this May I finally retired on disability.

Why did you want to become a PD Avenger?

I can’t remember how I came across the book “Ending Parkinson’s Disease” but after reading it I wanted to March on Washington! Non-violently of course but I didn’t know how to do it.  But when listening to Larry Gifford’s podcast, “When LIfe Gives You Parkinson’s” and hearing he had started the PD Avengers I knew I wanted to be a part of such an awesome organization whose main focus is to end Parkinson’s.

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

I think my superpower is being an example of perseverance and helping others with the disease, their family members, and anyone else who is curious about the disease. I refuse to let it win. I beat the odds by continuing to work for 15 years. Also, continuing my passion for flying by getting my glider’s license when my medical was  taken as a private pilot.  My goal has been to lead as normal of a life as possible while learning can about the disease and then helping others either through my newsletter the “Pedaling Parkie” or online, support groups, or just talking one on one with anyone that will listen to me.  I have found that because I was diagnosed at such a young age that it is a great talking point to anyone who sees me shuffling, tripping, or freezing that I’m not drunk but that I have Parkinson’s.  I guess helping others understand PD is my way of fighting back against the disease.

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

I wish people could understand the 24/7 aspect of the disease. It never stops trying to take from you. It is relentless in how it messes with every aspect of your life, physically, mentally, emotionally, socially. That's why we need to educate those around us, family, friends, coworkers, and government leaders on just how difficult it is to live everyday with PD so we can fund research to continue fighting for a cure.

What do you like to do for fun? 

I love spending time with my family.  We like to go boating, travel, and exercise together.  My family is super supportive. They support me in my exercise and fundraising campaigns for PD. In 2018, I started a team called “Team Fight’s On!” to earn money for PD research.  “Fight’s On” is a reference to what fighter pilots say to initiate a dogfight.  Sometimes I feel like I am in a dogfight with this disease.  My immediate family, my two brothers, my  sister and  her husband have now completed two “Salt to Saint” rides as part of the “Team Fight’s On!”.  The ride is a 450 mile relay race from Salt Lake City to St George Utah.  We have earned over $15,000 for PD research for the Michael J Fox Foundation (MJFF).

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

My advice to anyone fighting PD is that I cannot stress how important it is to exercise everyday you possibly can!  It doesn't matter what it is, find something  you enjoy because you'll do it.  Boxing, cycling, dancing, Tai Chi, walking, jogging, yoga whatever it is just get up and move!  We can't give up, we can't let it win!

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

One piece of advice is, I wish I had been told to look for trials that I could’ve been a part of much earlier in the course of the disease. I started on Sinemet as soon as I was told it was Parkinson’s.  If I had known that would disqualify me from so many trials I would’ve delayed the use of it while my symptoms were still very manageable.  I have been able to take part in many minor trials, but none with drug therapies.  I found that by the time I was looking to be a part of many drug trials it was too late.  So my advice to the Parkie Newbie is go to MJFF.org and sign up for the PPMI study. You can have your family sign up for it as well. You can also use the MJFF.org website to search for available trials in your area. The earlier you get involved in studies the better it is for all of us.

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

I had DBS surgery in Nov 2015 and it was a game changer. After the DBS surgery, I was down to 7 pills versus the 20 pills a day I took before the operation. Now I take 12 pills everyday, but these are not any of the pills that cause memory loss or compulsive behaviors I had taken previously. Best of all, it halted the dystonia issues I had in my leg and arm.  For some reason the operation has made it more difficult to coordinate my arms and legs for swimming, which is one of the parts of the triathlon which I loved doing for many years. Just like everything else that comes with PD, when it zigs, I zag and now I exclusively ride my bike. I love the bike!  A strange thing happens on the bike for me. I can be stumbling around hitting shoulders against walls, freezing, shuffling, and all the other fun that comes with the advancing disease, but when I get on a bike and start riding I feel almost normal.  It is a great escape for me and if I don’t do it daily I usually pay for it. My medicine is not as effective, I have major sleep issues and I will have extended off time.

Do you have any PD hacks to share?

My way of getting out of a freezing event is by using a cheap $8.00 laser pointer. If I shine it where I want to take my next step it helps me get unfrozen. It also helps my shuffling gait by helping me focus on longer strides.

The Bill To End Parkinson’s

“The most comprehensive, boldest, widespread piece of legislation specific to Parkinson’s disease ever introduced in the history of the U.S. congress.” — Ted Thompson, SVP Public Policy, The Michael J. Fox Foundation

A national plan to end Parkinson’s has the potential to:

• Dramatically increase federal research funding;

• Develop more effective pathways for treatments and cures;

• Improve early diagnosis;

• Spark new and improved models for patient care;

• Create standards and measures to prevent Parkinson’s disease;

• Address health disparities in diagnosis, treatment and clinical trial participation; and

• Enhance public awareness of the disease.

The public-private advisory council created as part of this legislation will report every year to Congress on their progress and impact in ending Parkinson’s. This is the kind of forward-looking strategy and responsible accountability the Parkinson’s community needs and deserves.

The National Plan to End Parkinson’s Act (H.R.8585) will, for the first time, unite the federal government and private enterprise in a mission to prevent and cure Parkinson’s, alleviate financial and health burdens on American families, and ensure those living with the disease have access to the care they need.

This bipartisan legislation is led by Representative Paul Tonko (D-NY) and Representative Gus Bilirakis (R-FL). The PD Avengers (Global Alliance to End Parkinson’s Diseas), The Michael J. Fox Foundation, members of UPAC (United Parkinson’s Advocacy Coalition) and Parkinson’s community are thankful for their leadership.

What’s Next?

The bill needs to pass the U.S. House and U.S. Senate and then signed by the President of the United States. Click video below to learn how a Bill becomes a Law.

PD Avengers Assemble - July 2022

PD Avengers, if you missed July’s PD Avengers ASSEMBLE meeting, here’s the video.

The Parkinson’s Games!

by Dianne Bramble, PD Avenger

Have you ever wanted to be an Olympic athlete?

I think we can all say that at some point in our lives, while watching the Olympics, we dreamed of standing on the podium watching our flag rise and hearing our National Anthem play. Most of us will never have that chance and when we were diagnosed with Parkinson’s that pretty much sealed the deal.

Or did it?

Some amazing people in Europe (People with Parkinson’s) have started a wonderful event called The Parkinson Games. Anyone with Parkinson’s can enter.

WHEN: Thursday, August 4, 2022 to Saturday, August 6, 2022

WHERE: Eindhoven, The Netherlands

WHIC SPORTS: More than 20! They’re listed here. The sports have been specially chosen for people with Parkinson's.
It concerns sports such as athletics (100m, 800m, 5km, long jump and shot put), badminton, basketball (3x3), boxing, curling, darts, duathlon, golf, bocce, powerlifting, spinning, squash, table tennis, tennis, football and swimming. In basketball we also have penalty throws in addition to the game. Playing football also has two options. A real match or taking penalty kicks. Golf is a competition over 9 or 18 holes. In addition, clinics are given for everyone. The duathlon is a swim run (250m swim and 5km run)

REGSITER You can follow this link to read more about it and sign up.

In Canada, I (PD Avenger Dianne Bramble) am keeping track of the Canadian Team Participations. In order have a coordinated Canadian Team presence.

The PD Avengers will also be be tracking other PD Avengers headed to the games. After you officially sign, be sure to swing back here to answer a few questions for us.

Who’s ready to join the team and live a dream? I know I am.

Please fill out the form below.

Sit2Stand Challenge

Stand Up to Parkinson’s

The PD Avengers are challenging YOU to see how many sit2stands you can do in a minute on World Parkinson’s Day with our partners; Neuro Heroes, Parkinson’s Africa, U-Turn Parkinsons and Rock Steady Boxing.

Hello, PD Avengers, we are the new co-chairs of the wellness committee - Kristi and Tash.

For our first order of business, we would like to challenge you to see how many sit2stands you can do in a minute for World Parkinson’s day on April 11, 2022. And then, we ask that you nominate  all your friends and family for this challenge! Film your sit2stands and share to social media with #worldparkinsonsday. Keep up the sit2stands throughout the day and log them all. Let’s support our friends at Neuro Heroes, who created this challenge, in meeting and exceeding their goals.

---

1. Film your sit2stands and post them to social media using #worldparkinsonsday.

2. Nominate at least 3 of your friends to compete in the challenge.

3. Keep doing sit2stands throughout the day, then record and log your final numbers.

---

Register at a link below and be sure to track the number of Sit2Stands you complete.

Click here for Africa Sit2Stands!

Click here for Canada Sit2Stands!

Click here for United States Sit2Stands!

Click here for United Kingdom and everywhere else Sit2Stands!

Why sit2stands?

The sit2stand challenge helps raise awareness by challenging individuals to move. Movement is something that becomes difficult with PD and is also the one thing demonstrated to slow the progression.

The awesome thing about a sit2stand is that it is a functional movement that is scalable if you find it challenging. Our Neuro Heroes friends with help from U-Turn Parkinson’s, Rock Steady Boxing, and us here at PD Avengers made a video that shows you how to do sit2stands along with modifications.

Let’s get sit2stand-ing and have some fun!

---

What are our goals?

As many Sit2Stands as People with Parkinson’s in your country.

(Numbers are rounded up from the 2020 estimates charted below)

2.7 Million for China

1 million for the US

344,000 Japan

266,000 Germany

230,000 Brazil

150,000 Italy

160,000 France

145,000 United Kingdom

120,000 Mexico, Spain

115,000 Canada

South Korea 75,000

Taiwan 60K

Unfortunately we do not have great statistics for all countries.

Kristi LaMonica

Co-Leader, Wellness Committee

Nastash (Tash) Fathergill Misbah

Co-Leader, Wellness Committee

How to properly and safely do a sit2stand.

N. Maserejian, L. Vinikoor-Imler, A. Dilley. Estimation of the 2020 Global Population of Parkinson’s Disease (PD) [abstract]. Mov Disord. 2020; 35 (suppl 1). https://www.mdsabstracts.org/abstract/estimation-of-the-2020-global-population-of-parkinsons-disease-pd/. Accessed April 3, 2022

Open Letter to Director-General of World Health Organisation (WHO)

Global Alliance to End Parkinson’s Disease
PD Avengers
Larry Gifford, President
 

April 1, 2022

Dr. Tedros Adhanom Ghebreyesus
Director-General
World Health Organization
New York, NY, 10017
United States 

Dear Dr. Tedros Adhanom Ghebreyesus,

I have the honor to send this letter on behalf of the Global Alliance to End Parkinson’s Disease– an international alliance of people living with Parkinson’s disease (PwP), our 90+ Parkinson’s organization partners and thousands of members from more than 80 countries, standing together to demand change in how the disease is seen and treated.1  

 I am writing to you as we approach the 25th anniversary of World Parkinson’s Day. In 1997, the World Health Organization (WHO) and the European Parkinson Disease Association (EPDA) collectively announced 11 April, James Parkinson’s 1755 birth date, as the annual day to bring urgently needed focused attention to this disease, which afflicts people without prejudice in every continent, regardless of ethnicity, race, colour, class, age, gender, and culture.1

This year, our alliance is launching the website www.worldparkinsonsday.com and a unifying Parkinson’s logo, “The Spark,” to be used by individuals and organizations worldwide to help spark conversation, education, and urgency towards finding  ways to stop Parkinson’s in its tracks. The World Parkinson’s Day logo with the Spark is available in 43 languages.

The World Health Organization (WHO) reports, “The global burden of neurological and neurodevelopmental conditions is high, with approximately 70% of the burden in low- and middle-income countries. Neurological conditions are the leading cause of disability adjusted life years (DALYs) and the second leading cause of death globally, accounting for nine million deaths per year.”2

WHO also declares Parkinson’s disease is the world’s fastest growing neurological condition.3

There is no cure. 

Globally, more than ten million people have the condition.4 Many more live with it, but without diagnosis due to the lack of access to a medical professional.

Parkinson’s is a misunderstood disease and lack of awareness makes people with Parkinson’s vulnerable and discriminated against. People with Parkinson’s (PwPs) earn less money, have difficulty obtaining and retaining employment despite qualifications and ability, and often must stop work as the disease progresses. The symptoms of this disease are pervasive, and  PwP’s are often stigmatized; mistaken for being intoxicated and in some countries even considered to be cursed by witches. PwP’s often lose their voice,  their ability to control their bodies and in essence, their future. This disease produces whole body disability and impacts PwPs physically, mentally, and emotionally.

Additionally, the mainstream drug to help manage Parkinson’s is Levodopa. This drug was discovered before the crew of Apollo 11 reached the moon. Yet, there are thousands of people with Parkinson’s living in poverty across the world, sometimes making the brutal choice between food for their family and medication for themselves. With a prescription of levodopa, people with Parkinson’s can continue for a time to work, be a partner, a parent and contribute to society. However, with time, the window of effectiveness for levodopa decreases and those taking the medication can experience complicated side effects.

World Parkinson’s Day is on 11 April. 

Today the United Nations and the WHO do not recognise it on their websites, calendars, official media releases, or social media channels.

We are humbly and respectfully requesting your support and formal recognition of World Parkinson’s Day on 11 April. We have included a media release and additional documents which may aid your participation through social media. Hopefully, we can spark a conversation to have World Parkinson’s Day formally recognised by the United Nations and the World Health Organization.

We also encourage you to join our Global Alliance of Partners and encourage individuals at your organization to join us as we work to add urgency to the cause of ending Parkinson’s.

Larry

(Signed) Larry Gifford
PD Avengers ,President

1 PD Avengers website www.pdavengers.com
2 History of World Parkinson’s Day – Parkinson’s Life website 2015 https://parkinsonslife.eu/dr-parkinsons-birthday-a-date-to-remember/
3 World Health Organization “Brain Health: Burden” https://www.who.int/health-topics/brain-health#tab=tab_2
4 World Health Organization “Brain Health: Burden” https://www.who.int/health-topics/brain-health#tab=tab_2
5 Parkinson Foundation Statistics https://www.parkinson.org/Understanding-Parkinsons/Statistics

Signed on behalf of the following organizations who have joined the alliance and are support The Spark campaign.

 1.      Alianza Iberoamericana de Parkinson (Spanish Speaking Countries)

2.      APDA (USA) American Parkinson's Disease Association (United States)

3.      APDA Massachusetts (United States)

4.      APDA Northwest (Pacific Northwest of United States)

5.      Asociația "Mai puternici decât boala Parkinson" (Romania)

6.     Associazione Italiana Giovani Parkinsoniani (Italy)

7.      BC Brain Wellness Program (Canada)

8.     Brian Grant Foundation (United States)

9.      Canadian Open Parkinson Network (Canada)

10.   Charco Neurotech (UK)

11.    Comitato Italiano Parkinson (Italy)

12.    Con P de Parkinson (Spain)

13.   Cure Parkinson's (UK)

14.   Davis Phinney Foundation (United States)

15.   Empower Parkinson's  (Canada)

16.   Ending Parkinson's Disease Book  (United States & Netherlands)

17.    Entraidons-nous (French-Canadian/Quebec, Canada)

18.   EPDA | European Parkinson's Disease Association  (Europe)

19.   Fuerte Es La Vida, Parkinson No Limits (SPAIN)

20.   Hilde-Ulrichs Foundation

21.    IMPACT Parkinson's (British Columbia)

22.   IPDGC - international Parkinson Disease Genomics Consortium – (Africa)

23.   It's Not Funny (Australia)

24.   LARGE-PD Latin American Research Consortium of Parkinson's Disease

25.   LSVT Global - (United States)

26.   Mediflix (United States)

27.   Move4YPD (Netherlands)

28.   Neuro Heroes (United Kingdom)

29.   Pacific Parkinson's Research Centre (British Columbia)

30.   Pacific Parkinson's Research Institute (British Columbia)

31.   Parkinson Alliance (United States)

32.   Parkinson Association of Alberta (Canada)

33.   Parkinson Canada (Canada)

34.   Parkinson Net (Netherlands)

35.   Parkinson Place (United States)

36.   Parkinson Society British Columbia (Canada)

37.   Parkinson Society Nova Scotia (Canada)

38.   Parkinson Society Southwestern Ontario  (Canada)

39.   Parkinson TV (United States)

40.   Parkinson Wellness Project - PWP  (United States)

41.   Parkinson Wellness Project - PWP  (Canada)

42.   Parkinsong (Austria)

43.   Parkinsonline (Austria)

44.   Parkinson's Africa (Africa)

45.   Parkinson's Alliance (United States)

46.   Parkinson's Art (UK)

47.   Parkinson's Association of West Michigan (United States)

48.   Parkinson's Australia (Australia)

49.   Parkinson's Disease Patients Welfare Society (Kolkata, India)

50.   Parkinson's Foundation (United States)

51.   Parkinson's International Foundation (United States)

52.   Parkinson's Resources (Pacific Northwest of United States)

53.   Parkinson's Si Buko Uganda (Uganda)

54.   Parkinson's UK (UK)

55.   Parkinson's Unity Walk (United States)

56.   Parky Life (UK)

57.   Schluss Mit Parkinson PD Avengers (Germany)

58.   PD Avengers Scotland (UK)

59.   PD Avengers Puerto Rico (Unincorporated Territory of the United States)

60.   PD Buzz (United States)

61.   PD Warrior (Australia)

62.   Ping Pong Parkinson (United States)

63.   PMD Alliance | Parkinson & Movement Disorder Alliance (United States)

64.   Power Over Parkinson's (United States)

65.   Rosy Gallery (Tokyo, Japan)

66.   Shake it Up - (Australia)

67.   Shaky Nation (United States)

68.   Shaky Radio (UK)

69.   Sport Parkinson's (UK)

70.   Spotlight YOPD (UK)

71.    Stop, Parkinson România ! (Romania)

72.   STOPD - (NY & LA) - Theatre for PD (United States)

73.   Surrey Neuroplasticity Clinic (Canada)

74.   The Michael J. Fox Foundation (United States)

75.   The Parkinson Games (Netherlands)

76.   Tightrope Impro Theatre – Improv for Parkinson’s (Canada)

77.    Trepetlika Parkinson's Disease Society of Slovenia (Slovenia)

78.   Twitchy Woman (United States)

79.   University of Dundee (UK)

80.   Unshakeable MD (Canada)

81.   U-Turn Parkinsons (Canada)

82.   Voice Aerobics, LLC (United States)

83.   When Life Gives You Parkinson's (Canada)

84.   Wikiparky.tv (Italy)

85.   Women's Parkinson Project (Ireland & United States)

86.   World Parkinson's Congress (Spain)

87.   World Parkinson's Coalition (United States)

88.   World Parkinson's Program (Canada)

89.   Yes! And Exercise (United States)

90.  Yuvedo Foundation (Germany)

GLOBAL ALLIANCE TO END PARKINSON’S DISEASE LAUNCHES NEW SYMBOL FOR PARKINSON’S AWARENESS

Vancouver, BC Canada – April 1, 2022 – More than 80 Parkinson’s disease organizations and thousands of advocates from 83 countries announce the launch of ‘The Spark,’ a new international symbol for Parkinson’s awareness, to increase conversation and public awareness around the world’s fastest growing neurological disease. The symbol will be promoted and shared around the world during World Parkinson’s Day on Monday, April 11, 2022.

The Spark, inspired by dopamine – a critical electro-chemical neurotransmitter that people with the disease are striving to retain – will be used to energize a global movement and inspire urgency, unity, and hope to end Parkinson’s Disease. 

“The who’s who of Parkinson’s combine forces under a new symbol to keep the disease top of mind for everyone. The Spark is intended to electrify a powerful movement changing how all of us think about this disease. We want to break the stigma around Parkinson’s. We’re leading a louder call to fund medical breakthroughs. And together – we’re striving to put Parkinson’s in the past,” said Larry Gifford, President and co-founder of Global Alliance to End Parkinson’s Disease (also known as the PD Avengers).

“We want to break the stigma around Parkinson’s. We’re leading a louder call to fund medical breakthroughs. And together – we’re striving to put Parkinson’s in the past”

— Larry Gifford, President of Global Alliance to End Parkinson’s Disease PD Avengers

THE INCREASING IMPACT OF PARKINSON’S ON INDIVIDUALS, FAMILIES, AND THE GLOBAL COMMUNITY CANNOT BE IGNORED.

●      Parkinson’s Disease is the fastest growing neurological condition in the world.

●      Parkinson’s is indiscriminate regarding gender, sex, ethnicity, age, and geography.

●      Up to 10% of People with Parkinson’s are diagnosed in their 40’s or younger.

●      Parkinson's is caused by a combination of genes, environmental and lifestyle influences. The interaction of all three components determines if someone will develop Parkinson's.

●      Currently, there is no cure.

●      The herbicide and pesticide Paraquat are among the toxins linked to increased risk of the onset of Parkinson’s disease. It is banned in dozens of countries including China and the UK, where they continue to manufacture the product. While a teaspoon is lethal for a human being, more 7-million pounds of Paraquat were used on crops in the United States in 2015 and that number is steadily increasing year after year.

●      Parkinson’s is a misunderstood disease, and the lack of awareness makes people with Parkinson’s vulnerable and discriminated against. People with Parkinson’s earn less money, have difficulty obtaining and retaining employment despite qualifications and ability. They often have to retire early. The symptoms of the disease, mean people with the disease are often mistaken for being intoxicated and in some countries are considered to be cursed by witches. Many live in constant pain. They often lose their voice, their confidence, the luxury of sleep and their ability to control their automatic functions, their limbs, and their future.

SHARE YOUR SPARK ON WORLD PARKINSON’S DAY

This World Parkinson’s Day, we are calling on those impacted by the disease to stand up, speak out and unite to end Parkinson’s. People can join our movement by sharing The Spark with friends, family and on social media channels on Monday, April 11, 2022.

Every organization, individual or group who want is encouraged to share The Spark in their campaign, event, or communications around World Parkinson’s Day and beyond. The Spark toolkit can be downloaded here worldparkinsonsday.com. People can either personalize The Spark or share one of dozens of pre-made graphics.

ABOUT THE SPARK’S DEVELOPMENT

The Spark was conceived by a coalition of global patient and advocacy organizations who are all seeking to end Parkinson’s Disease.

 “The EPDA is incredibly proud to be a part of this incredibly unique global coalition of Parkinson’s organizations. We all have the same goal: for the ’Spark’ logo to, over time, help the Parkinson’s community speak with one voice on World Parkinson's Day – thereby amplifying our own individual voices, and creating a bigger impact globally year after year. People with Parkinson’s and their families cannot wait for change to happen to them. We need to create that change ourselves, and we hope this logo will be an important step in that direction,” said Dominic Graham, Operations Director, European Parkinson’s Disease Association (EPDA).

“We know the power of the Parkinson’s community cannot be understated. It’s the spark of the community coming together in a multitude of ways, including through this global alliance of Parkinson’s organizations, which has transformed Parkinson’s research into what it is today. And it’s this community coming together that will help realize new breakthroughs that are right around the corner for people and families with Parkinson’s,” said Debi Brooks, CEO and Co-Founder of The Michael J. Fox Foundation for Parkinson’s Research.

“Parkinson’s is the fastest growing neurological condition in the world, and it needs to be recognised as an urgent health priority. I hope that this year’s World Parkinson’s Day will be the spark that creates a sense of urgency within international health agencies, governments, and leads to significant investment in to research for treatments that change the progression of Parkinson’s.  It is time to end Parkinson’s,” said Helen Matthews, Deputy CEO, Cure Parkinson’s

The Spark was designed in partnership with Franklyn (franklyn.co), a creative studio based in Brooklyn, New York. The six-month effort was comprehensive and engaged a global community of PD patients and advocates.

“This was a tall task as whatever symbol we crafted for the global PD community had to be simple, urgent, and tied to the disease itself. Creating a logomark that is also customizable and truly ‘open-source’ – anyone can download it, draw it, draw on it and use it to tell their own stories – is also what makes it powerful, personal, and deeply emotional,” said Michael Freimuth, the Co-Founder of Franklyn.

To share The Spark and join the movement to end Parkinson’s, visit worldparkinsonsday.com

We encourage all media to use The Spark and the digital assets found here, to help debut the symbol to audiences worldwide beginning April 1st, on World Parkinson’s Day and as a symbol of Parkinson’s Awareness when appropriate throughout the year.

A full list of members and links to the organizations are listed below and will be featured on the website: worldparkinsonsday.com.

Additional quotes below

 ###

Media Contact:

Bruce Claggett

bruce@switchboardpr.com

(604) 996-2256

PARTNER ORGANIZATIONS

Organizations which are supporting The Spark include (in alphabetical order):

1.      Alianza Iberoamericana de Parkinson (Spanish Speaking Countries)

2.     APDA American Parkinson's Disease Association (United States)

3.     APDA Massachusetts (United States)

4.     APDA Northwest (Pacific Northwest of United States)

5.     Asociația "Mai puternici decât boala Parkinson" (Romania)

6.     Associazione Italiana Giovani Parkinsoniani (Italy)

7.      BC Brain Wellness Program (Canada)

8.     Brian Grant Foundation (United States)

9.     Canadian Open Parkinson Network (Canada)

10.   Charco Neurotech (United Kingdom)

11.   Comitato Italiano Parkinson (Italy)

12.   Con P de Parkinson (Spain)

13.   Cure Parkinson's (United Kingdom)

14.   Davis Phinney Foundation (United States)

15.   Empower Parkinson's  (Canada)

16.   Ending Parkinson's Disease Book  (United States & Netherlands)

17.   Entraidons-nous (French-Canadian/Quebec, Canada)

18.   EPDA | European Parkinson's Disease Association  (Europe)

19.   European Parkinson’s Therapy Centre (Italy)

20.  Fuerte Es La Vida, Parkinson No Limits (Spain)

21.   Hilde-Ulrichs Foundation (Germany)

22.   IMPACT Parkinson's (British Columbia)

23.   IPDGC - international Parkinson Disease Genomics Consortium – (Africa)

24.  It's Not Funny (Australia)

25.   LARGE-PD Latin American Research Consortium of Parkinson's Disease (Latin America)

26.  Living Better with Parkinson’s (Canada)

27.   LSVT Global (United States)

28.  Mediflix (United States)

29.  Move4YPD (Netherlands)

30.  Neuro Heroes (United Kingdom)

31.   Pacific Parkinson's Research Centre (British Columbia)

32.   Pacific Parkinson's Research Institute (British Columbia)

33.   Parkinson Alliance (United States)

34.  Parkinson Association of Alberta (Canada)

35.   Parkinson Canada (Canada)

36.  Parkinson Place (United States)

37.   Parkinson Society British Columbia (Canada)

38.  Parkinson Society Nova Scotia (Canada)

39.  Parkinson Society Southwestern Ontario  (Canada)

40.  Parkinson Wellness Project - PWP  (United States)

41.   Parkinson Wellness Project - PWP  (Canada)

42.  Parkinsong (Austria)

43.  Parkinsonline (Austria)

44.  Parkinson's Africa (Africa)

45.  Parkinson's Alliance (United States)

46.  Parkinson's Art (United Kingdom)

47.   Parkinson's Association of West Michigan (United States)

48.  Parkinson's Australia (Australia)

49.  Parkinson's Disease Patients Welfare Society (Kolkata, India)

50.  Parkinson's Foundation (United States)

51.   Parkinson's International Foundation (United States)

52.   Parkinson's Resources (Pacific Northwest of United States)

53.   Parkinson's Si Buko Uganda (Uganda)

54.  Parkinson's UK (United Kingdom)

55.   Parkinson's Unity Walk (United States)

56.  Parky Life (United Kingdom)

57.   PD Avengers Scotland (United Kingdom)

58.  PD Avengers Puerto Rico (Unincorporated Territory of the United States)

59.  PD Buzz (United States)

60.  PD Warrior (Australia)

61.   Ping Pong Parkinson (United States)

62.  PMD Alliance | Parkinson & Movement Disorder Alliance (United States)

63.  Power Over Parkinson's (United States)

64.  Rosy Gallery (Tokyo, Japan)

65.  Schluss Mit Parkinson PD Avengers (Germany)

66.  Shake it Up (Australia)

67.   Shaky Nation (United States)

68.  Shaky Radio (United Kingdom)

69.  Sport Parkinson's (United Kingdom)

70.   Spotlight YOPD (United Kingdom)

71.   Stop, Parkinson România ! (Romania)

72.   STOPD - (NY & LA) - Theatre for PD (United States)

73.   Surrey Neuroplasticity Clinic (Canada)

74.   The Michael J. Fox Foundation (United States)

75.   The Parkinson Games (Netherlands)

76.   Tightrope Impro Theatre – Improv for Parkinson’s (Canada)

77.   Trepetlika Parkinson's Disease Society of Slovenia (Slovenia)

78.   Twitchy Woman (United States)

79.   University of Dundee (United Kingdom)

80.  Unshakeable MD (Canada)

81.   U-Turn Parkinsons (Canada)

82.  Voice Aerobics, LLC (United States)

83.  When Life Gives You Parkinson's (Canada)

84.  Wikiparky.tv (Italy)

85.  Women's Parkinson Project (Ireland & United States)

86.  World Parkinson's Congress (Spain)

87.   World Parkinson's Coalition (United States)

88.  World Parkinson's Program (Canada)

89.  Yes! And Exercise (United States)

90.  Yuvedo Foundation (Germany)

QUOTES FROM MORE ORGANIZATIONAL LEADERS SUPPORTING THE NEW SYMBOL FOR PARKINSON’S DISEASE AWARENESS

“The Davis Phinney Foundation is proud to participate in this global partnership to increase awareness of Parkinson’s. Awareness, health literacy, and community support are just as critical to our mission of helping people with Parkinson’s live well today as they are to ultimately ending Parkinson’s, and we stand in solidarity with the call to increase advocacy, reduce stigma, and change the way people live with Parkinson’s.”

- Polly Dawkins, Executive Director, Davis Phinney Foundation

“Parkinson Association of Alberta is a proud member of a united international community of people living with or loving someone with Parkinson disease. On World Parkinson's Day 2022, we join together to spark conversation and understanding of the condition and those affected.”

- Lana Tordoff, Executive Director, Parkinson Association of Alberta

“‘Don't tell anyone I have Parkinson's!'. Over and over again I hear these words. Stigma stops people going out, exercising, getting treatment and socialising which leads to inactivity and depression. It seals their fast decline. I will not hide! I exercise and get back what I lost. I will not except stigma! I am worthy of love just as much as anyone.”

- Christine Jayachandran, Founder, Alianza Iberoamericana de Parkinson

“We are excited to follow the fear, failure, and fun as a group, sparking new connections and resources for all to connect and live better together!”

- Robert Cochrane, CEO/Founder, Yes, And…eXercise!

"It is only through global collaboration that we will find the answers to prevent, slow and stop Parkinson's in it tracks. Let's unite and light up the Spark to put an end to Parkinson's."

- Clyde Campbell AM, Founder & CEO of Shake It Up Australia Foundation

“LSVT Global, Inc. is committed to efficacious rehabilitation for PD globally.”

- Cynthia Fox, PhD, CEO, LSVT Global

"We at Shaky Nation are delighted to be a small part of World Parkinson's Disease Day 2022 and the unveiling of the Spark! If you haven't yet found a tribe of likeminded people with Parkinson's Disease, come check us out. Let's make some Sparks!"

- Steve Phillips, founder of Shaky Nation

“Spark is a brilliant idea. I hope it will spark a sleeping community around the globe into a wildfire of activity that will lead us into slowing down the progression and finding a cure as soon as humanly possible. We didn't conquer Parkinson, but we are conquering the fear of Parkinson. Tulip never impressed me. SPARK does it for me!”

- Nenad Bach, founder & president PingPongParkinson®

One Giant Leap for Geoff, One Small Step for Parkinson’s…

Sir Geoffy of Moomba takes flight. Official photo: Moomba Committee and used on their social media posts.

The iconic Melbourne Moomba festival is run over 3 days and is the largest free Festival in the Southern Hemisphere . The major event for the festival is the iconic Birdman Rally.

Birdman Rally participants must create a flying air craft. The craft has be hand built with a lot of size, weight and material limitations.

On the top of Geoff Constable’s shaky aircraft was a hand built replica of the Flux Capacitor from the Back to the Future movie franchise starring Michael J. Fox. That shouldn’t be a surprise to anyone who knows this Naval Architect turned Parkinson’s Advocate.

15 years into his journey with Parkinson’s, Sir Geoffy of Moomba was raising awareness of the disease. His entry and his team featured the PD Avengers and Fight Parkinson’s Victoria.

Awareness Mission Accomplished thanks to The Age and countless videos on YouTube.

And now, let the Birdman Rally countdown begin; 3-2-1…

When it was show time, Geoff, 65, didn’t disappoint. Donning a new BLUE hairdo and a custom fit, skin tight PD Avengers superhero costume, this Aussie came to compete. His flight was a raucous 4.5 meters.

The PD Avengers flew into a 2nd place finish in our first time in the event.

PD Avenger’s Aussie chapter leader Geoff Constable and his TEAM PD AVENGERS raised $15,000 in 2 weeks plus $5,000 prize money which will go to Fight Parkinson’s in Victoria, Australia.

British colonel with Parkinson’s disease heads to West Africa to help battle the stigma of PD.

Documentary - A British colonel’s solo voyage across Africa, fighting Parkinson’s stigma

By Guy Deacon C.B.E.

The world needs to be more aware of the devastating effects Parkinson’s disease has on an individual’s entire being. And, we must fight the stigma’s associated with Parkinson’s disease and its symptoms. This documentary will achieve both.

I’m Guy Deacon, a retired British Army Colonel on a mission to raise awareness about the realities of living with Parkinson’s disease both in the UK and Africa. I have already driven over five thousand miles from England to Sierra Leone crossing the snowy passes of the Atlas Mountains, the deserts of the Western Sahara and the sahel of Senegal to demonstrate that having Parkinson’s disease need not dominate my life. The challenge was significantly greater than I had foreseen but nothing compared to what is to come.

I was evacuated from Sierra Leone in April 2020 following the outbreak of COVID-19. So, I have lost two years, but this just makes me more determined than ever to complete the next seven thousand miles to South Africa. Since I was diagnosed with Parkinson’s in 2011 every aspect of life has become slowly but inexorably more difficult. There will be a time in the future when I can no longer drive and I will become dependent on others, but that time is not yet and I will not let Parkinson’s disease stop me from living a full life.

“The worst thing about Parkinson’s isn’t the physical side. The physical side is really boring. But, it is the affect it has on your desire to be with other people and to enjoy life. And it destroys that. It undermines your confidence and you think of yourself as being unworthy of people’s attention and care. It undermines your self esteem. I hate that about it.”

— Guy Deacon C.B.E.

---

---

Listen to Guy’s Podcast for Updates

Three things this documentary will highlight

 1) The mental and physical toll that Parkinson’s disease takes upon an individual’s body and mind, as I overcome the physical and mental challenges on this gruelling journey.

2) The challenges faced by those in Africa living with Parkinson’s disease, many of whom are stigmatised by the disease’s symptoms and alienated by society. But it will also give voice to the wonderful work being done by those dedicated health workers who are addressing the condition, in the most difficult environments and hard to reach places. During my journey I’ll be highlighting the work of the African charities who support those living with Parkinson’s with limited access to help.

3) Countries which are little known to a western audience, all of which possess stunning scenery, spectacular ecosystems and fascinating histories.

Face-to-Face with Parkinson’s Disease

December 27, 2021

Written by PD Avenger Miriam Bram, New York, NY, USA

I attended the Face-to-Face Parkinson’s Town Hall event in Manhattan in December. This is the first Parkinson’s event organized by Mediflix, a streaming video health platform providing information to those living with a chronic illness. It was also my first in-person indoor Parkinson’s gathering in two years. Masks on, my 18 year-old daughter and I entered the Times Square venue and joined the group in an auditorium The turnout was rather small, given the recent surge in Covid-19 cases due to the Omicron variant. 

The presentation came in theatrical form. Leading Parkinson’s neurologist, Professor Bas Bloem, MD was beamed in from the Netherlands to welcome the audience to an evening of education and access to top Movement Disorder Specialists (MDS) including Mathew Stern MD, Nabila Dahodwala, MD, MS, Ashley Rawls, MD, Ray Dorsey, MD and Michael Okun, MD.

Bas Bloem, PhD, MD and Ray Dorsey, MD.

The program opens with a young man standing under a spotlight on stage engaged in a mock phone conversation with Dr. Michael Okun, who appears on screen. He is expressing concern about his mother’s symptoms and the doctor is encouraging him to bring her in to be evaluated. The lights go dark for a brief moment before they reveal the five neurologists at center stage. They are sitting around a table and begin an open and frank dialogue about how they approach patient care. They all agreed that no physician has the same style.

These are a few of the topics they covered:

MEDICATION

Not surprisingly, they led with medication, noting that patients can sometimes be afraid to start medications. The benefit of starting medications, include an improvement in quality of life and the ability to continue the life they have been living. Looking beyond the motor symptoms, medication is highly important to consider for non-motor symptoms like treating anxiety and depression.

 EXERCISE

Exercise, as expected is also at the top of the list. Doing 30 minutes of cardio a day and a varied exercise routine they said is known to be the most effective treatment for slowing progression.  Consensus was to tell the patient to do the physical activities that they love and schedule it so they can actually be successful.

PROGNOSIS 

The most often-asked question from newly diagnosed, according to the group, is “how many good years do I have left?” Of course, there is no way to give an exact answer. Every Parkinson’s patient has their own individual course of progression. It is a delicate subject and the clinicians want to balance encouragement with realistic expectations. Dr. Stern identified that mood was a predictor of long-term wellness. In his practice, patients most likely to have a slower progression were those that showed a positive mindset. 

NUTRITION

Nutrition - the Mediterranean diet was most recommended. Eat lots of fruits and vegetable and wash them thoroughly.

 PLASTICITY

Brain plasticity-the group noted that creating new neural pathways is critical to a patient maintaining cognitive and movement skills. They suggested learning new things, both mentally and physically to keep the brain active.

They wrapped up the round table discussion by taking turns standing in the spotlight with a few minutes to recap one topic, i.e. cognitive decline, exercise, participation in research, among others.

A short video is shown of a person with Parkinson’s named Gina who is highlighted on the Mediflix website. She does a road trip to educate herself about courses of treatment like DBS and has a conversation with Dr. Stern.

Q&A

The last act was a Q&A with the clinicians and a group of professionals in varied modalities serving the Parkinson’s community. One Interesting question from the audience to the neurologists was “What would you do if you were diagnosed with Parkinson’s?” Bas Bloem said he would create a multi-disciplinarian team including the MDS, caregiver, support group, community and others, such as psychologist and physical therapist. He noted the importance of having the right medication, positive outlook, exercise, participating in research and advocacy. 

 I recommend that as a PD Avenger, you check out the Mediflix website as a resource for information on Parkinson’s and inquire as to the plan for holding events in other cities. They are a good forum for connecting with your local community. To see the recording of this event, check www.mediflix.com in early 2022.

Your Experience, Our Inspiration

By Eirwen Malin, Research Committee

Please send us your thoughts on your experiences with Parkinson’s. No one knows your condition better than you.

Sir Alexander Fleming accidentally discovered penicillin in 1928 while experimenting with influenza. Fame Images.

The research committee of PD Avengers needs your help to develop Sparks of Experience.  We all know stories of important scientific moments, like Fleming’s discovery of penicillin.  It may appear to have been accidental and leaving the petri dish on the window sill may not have been planned, but it was no accident that Fleming’s curious mind made a breakthrough.  We believe that there are curious minds that will set new directions to work towards a cure or novel treatments for Parkinson’s and some of them may be PD Avengers.  We are not talking about researchers now, but about those who endure the condition and those who are close to them, so we are asking for your help.

Living with this pesky and perplexing condition demands a great deal of self awareness and self education and many people living with Parkinson’s (PLwP) give a lot of thought to their experiences.  You may think to yourself “I wonder why my symptoms are worse in the winter?”, or “How would it be different if I were left-handed?” or “Why is it I am always at my best when I go to see the consultant?”  When you try to find the answers you think “Why isn’t anyone researching this?!” 

We want to collect these sort of thoughts from around the globe and highlight them to researchers and funders.  Your experiences could provide the inspiration for a new direction for research and that so far elusive key to unlocking the mystery of Parkinson’s.

There are already good, well known examples of inspiration in the Parkinson’s world including an observation by a patient back in 1969 who noticed that her Parkinson’s symptoms improved while she was taking the prophylactic Influenza drug Amantadine.  The drug was redeveloped as a Parkinson’s treatment. 

Joy Milne can smell Parkinson’s. Listen to her story on this podcast.

More recently we heard about PD Avenger Joy Milne, with a sensitive nose, and how she noticed a change in the way her husband smelled long before his PD diagnosis.  She brought it to the attention of a researcher and the resulting projects have provided exciting developments. 

What do you ponder about which may just be the inspiration needed?  No matter how quirky, off the radar or even boring and obvious it may seem to you, please send us a couple of paragraphs to let us know.  We’ll collate the list, see if there are common threads and make sure that researchers and funders around the world get a copy. 

Who knows where your simple ponderings may lead? Please send us your thoughts on your experience.  No one know your condition better than you.

email: sparksofexperience@gmail.com

Help Inspire the World Parkinson’s Day Logo

World Parkinson’s Day is April 11th.

In 2022 and beyond, The PD Avengers, The EPDA and more than 50 partners worldwide will be taking a “Think Global, Act Local” approach, uniting us all with a singular, universal logo for World Parkinson’s Day. 

Share Your Inspiration

Share Your Inspiration

We want you to help inspire this logo by sharing with us your original art, music, writing, photography, or anything else you that would help provide inspiration for this logo. Deadline is October 25, 2021

This is not a contest.
We are not looking for you to submit a finalized logo.
We expect the final logo design will be inspired by multiple pieces. We would be grateful if all contributors would consider donating their inspiration to the PD Avengers World Parkinson’s Day campaign for us to use with attribution to help highlight the April campaign.

PD Avengers TAKEOVER

PD Avenger co-founders Soania Mathur, Tim Hague and Larry Gifford staged a PD Avengers Takeover of the Michael J. Fox Foundation podcast two months in a row. MJFF kindly donated the platform for the PD Avengers to introduce the podcast audience to other partner organizations in North America and Europe.

The first episode features:

• Dr. Joerg Karenfort and Dr. Cathy Molohan of the YUVEDO Foundation 

• Helen Matthews, Deputy CEO at Cure Parkinson’s  

• Debi Brooks, Co-founder and CEO at The Michael J. Fox Foundation

The second episode features:

• Jenna Deidel, Director of Programs and Outreach of Davis Phinney Foundation

• Katrina Kahl, Executive Director of the Brian Grant Foundation

• Josefa Domingos, Board Member of the European Parkinson’s Disease Association

• John Lehr, President and CEO of Parkinson’s Foundation

• Dr. Karen Lee, CEO of Parkinson Canada

• Paul Jackson-Clark, Director of Engagement of Parkinson’s UK

PD Avengers Championing ‘Women and PD’

The International Women’s Day 2021 theme this year was about #ChooseToChallenge . With the sentiment “from challenge comes change”, one of the PD Avengers founding members, Richelle Flanagan, chose to challenge and call out gender bias inequality for women with PD. She did this through an interview with one of the co-founders of the Women’s Brain Project, Dr Maria Teresa Ferretti, which is an organisation championing women’s brain health. As part of the webinar, Richelle set up a PD Avengers survey of women with PD and the effect of hormones on their symptoms. The results of the of the initial 20 respondents were so interesting that the PD Avengers Wellness Committee decided to disseminate the survey more widely to see if the results were correct. To date the survey has almost 200 responses, including a Hispanic survey.

The survey results identify an unmet need for better treatment of women Parkinson’s symptoms in relation to hormonal changes. 

The results showed that 74% of women experience worsening of their symptoms around menstruation with rigidity, bradykinesia and dystonia being the worst affected motor symptoms (Figure 1). Whilst fatigue, anxiety and depression being the worst affected non- motor symptoms (figure 2).

Figure 1 PD Motor symptoms affected by menstruation.

Figure 2 PD Non-Motor symptoms affected by menstruation.

Interestingly, the Hispanic survey showed that the most affected non-motor symptoms were fatigue, pain, apathy, and anxiety.

86% of respondents reported that their symptoms got worse in the week prior to their menstrual bleed. This is linked to a drop in oestrogen levels in the week prior to menstruation. The drop in oestrogen affects the production of dopamine which can lead to worsening of PD symptoms.

65% of women who are perimenopausal reported that their symptoms fluctuate randomly and are more difficult to control. While 61% of women who have gone through the menopause report that their symptoms remained the same, 17% reported improvement in symptoms and 22% said they were worse.

21% of the non-Hispanic respondents reported having received HRT, whilst only 5% of Hispanic respondents reported having received HRT. Of the respondents who reported taking HRT, 46% reported an improvement in their PD symptoms whilst 27% reported worsening of symptoms and similarly 27% reported no change in symptoms. Of the women who reported receiving HRT, 78% said they received it during perimenopause.

Finally, 87% of women said that their neurologist had never discussed the effect of hormones on their PD symptoms; 96% said their neurologist never adjusted PD medication around their cycles; 95% said their neurologist never suggested HRT and 90% never discussed the effects of perimenopause or menopause on their PD (Figure 3).

Figure 3 Neurologists engagement around hormones effect on PD

This survey led the Wellness committee of the PD Avengers to organise two webinars, one European and one American to discuss panel of experts the result and debate what needs to be done for women with PD.

This survey led the Wellness committee of the PD Avengers to organise two webinars, one European and one American to discuss the survey results with a panel of experts and to discuss what needs to be done for women with PD.

These survey results corroborated many of the discussions by women with PD in various support groups both online and off-line about the effect of hormones on their PD. This survey led the Wellness committee of the PD Avengers to organise two webinars, one European and one American to discuss panel of experts the result and debate what needs to be done for women with PD.

The first webinar, hosted by the Cure Parkinson’s Trust, included the following panellists:

Professor Elena Moro, MD, PhD, Professor of Neurology at the faculty of medicine of the Grenoble Alpes University in Grenoble, France, and Co-chair of EAN Task Force on Gender and Diversity issues in Neurology.

Dr Maria Teresa Ferretti, PhD, Co-founder and Chief Scientific Officer, Women's Brain Project, Switzerland

Louise Ebenezer, Parkinson’s disease Clinical Nurse Specialist, ABM University Health Board, Bridgend, UK

Dr Cathy Molohan, PD Advocate, WPC Ambassador, PD Avenger, Director International Relations of Yuvedo, Germany

Dr Annelien Oosterbaan, MD/PhD, PD Advocate, Gynaecologist, The Erasmus University Medical Center, Rotterdam, Netherlands

Richelle Flanagan, Dietitian, PD Advocate, WPC Ambassador, PD Avengers Founding Member, Co-founder Women’s Parkinson’s Project, Ireland.

The webinar can be watched back here: https://cureparkinsons.org.uk/2021/04/pdavengers-webinar/

The second webinar was hosted by our partner the PMD Alliance with the following panellists:

The second webinar was hosted by our partner the PMD Alliance with the following panellists:

Dr Roberta Marongiu, Assistant Professor of Neuroscience in Neurological Surgery, Weill Cornell Brain & Spine Unit.

Dr Maria De León, Retired Movement disorder specialist, PD Advocate, and well-known author of Parkinson’s Diva.

Dr Indu Subramanian, MDS Parkinson’s Center of Excellence at the West Los Angeles Veteran’s Hospital and UCLA Hospital.

Kat Hill. RN, MSN, NP, PD Advocate for WPC, Davis Phinney Foundation, PD Avengers, and co-founder of the Women’s Parkinson’s Project

Richelle Flanagan, RDN, MSc, PD Advocate, WPC Ambassador, PD Avengers Founding Member, and co-founder of the Women’s Parkinson’s Project.

The webinar can be watched back here: https://www.pmdalliance.org/portfolio/women-with-pd-addressing-needs-pursuing-breakthrough-treatments/

There were many items discussed by these panels with the following main themes:

• The fact that some centres are using extra PD medication to reduce the impact of the drop in oestrogen around menstruation, whilst other centres are using hormone therapy such as the contraceptive pill. Albeit that both approaches seem to work for some women with PD, these approaches are not widely used and there is no consensus on the best approach.

• The lack of awareness of neurologists of the impact of hormones on PD symptoms around menstruation, perimenopause, and post menopause.

• The lack of clinical guidelines for the management of hormonal issues in PD.

• The lack of clinical trials looking at hormonal issues in women with PD.

• The use of diaries, in particular digital monitoring of hormonal fluctuations in relation to PD symptoms and the potential for digital biomarkers to help identify differences between the genders but also potentially differentiating prodromal symptoms between genders.

• The need for women to speak up for themselves and to discuss the impact they believe hormones are having on their symptoms.

• The lack of funding for research into women with PD and the need to collaborate across other neurological conditions that are similarly impacted by hormones e.g., MS, migraine.  

Several action items were identified out of these webinars which the PD Avengers wish to take forward:

1.      Development of expert opinion guidelines for the management of women’s PD symptoms around menstruation.

2.      Need for all education of neurologists around hormonal impacts on PD symptoms.

3.      Need for clinical trials to give more robust evidence for the better use of PD medication and hormonal medication for the management of PD symptoms in women. 

4.      Development of a research paper based upon the PD Avengers survey results and the webinar discussions.

5.      Collaboration across different centres on the development of research surveys of women with PD.

6.      Development of advocacy information about women, PD, and hormones for women to discuss with their medical providers.

7.      Call to action women with PD to work together to raise awareness of the unmet medical needs of women living with PD.

8.      Call to action by the PD Avengers to raise awareness of the need for increased funding into research for women and PD.

9.      The need for a ‘Women with PD’ taskforce to call for action to improve the lives of women living with PD.

The surveys are still available if women with PD would like to complete them:

Non - Hispanic https://www.surveymonkey.com/r/PDWomenHormones

Hispanic https://www.surveymonkey.com/r/mujeryparkinsons

Please sign up for the PD Avengers https://www.pdavengers.com/become-a-pd-avenger to be kept up to date with our actions for Women with PD including sharing research surveys, research results, further webinars, and any other information relevant to women with PD.

Beverly Hills, California Issues Proclamation for Parkinson’s Awareness

PD Avenger Sharon Krischer has secured a proclamation from the Mayor and CIty Council of Beverly Hills, California. Sharon is the author of the “Twitchy Woman” blog, a member the California Chapter Advisory Board, Parkinson's Foundation, and a fierce advocate for Women and Parkinson’s Disease.

Texas Governor Issues Proclamation for Parkinson’s Awareness Month

PD Avenger Marcie Salamone, Dallas Area Parkinson Society and a Director on the Board of the Parkinson Foundation is going straight to the top in Texas to get some help in raising awareness. She tells us all about a personal appeal to Governor Greg Abbot of Texas. She says she requested the Governor issue a proclamation to recognize April as Parkinson's Awareness Month. And it arrived just in time for April events for Parkinson Awareness. Marcie’s action was the catalyst for a Governor of the U.S. to issue proclamation. That raises awareness. Thanks Marcie.

PD Avenger from Uganda takes his letter to the U.N.

Kabugo Hannington is an advocate whose mother had Parkinson’s and was labeled a witch. He never wants anyone with pD to have to endure that. When the PD Avengers asked members to follow our lead by writing to UN Ambassadors respectfully requesting it observe 11-April as World Parkinson’s Day. Use this link to find your Ambassador to the UN.

The U.N. Should Observe World Parkinson’s Awareness Day 2021

PD Avengers are humbly and respectfully asking the United Nations and it’s Member States to formally observe World Parkinson’s Day and Parkinson’s Awareness Week as it does for so many other important causes around the world.

CLICK HERE to find your country’s Ambassador to the United Nations. Write a letter in your own language and attach a version of the letter below.

Our Letter to the United Nations

PD Avengers

Larry Gifford

2593 Grant Street

Vancouver, BC, V5K 3G6

Canada

March 22, 2021

His Excellency

António Guterres

Secretary-General

United Nations

New York, NY, 10017

United States

Excellency:

I have the honour to send this letter on behalf of the PD Avengers – a global alliance of people living with Parkinson’s disease (PwP), our partners and friends from more than 60 countries, standing together to demand change in how the disease is seen and treated.1 I am writing to you inspired and encouraged by the role of the United Nations in creating a healthier, happier and more sustainable world. We are respectfully requesting that the United Nations consider observing 11 April as World Parkinson’s Day and the week in which 11 April occurs as Parkinson’s Awareness Week.

11 April is the anniversary of the 1755 birthday of James Parkinson. His published “Essay of Shaking Palsy” in 1817 was the first detailed look at the disease. 11 April has been marked as World Parkinson’s Day since 1997 to bring needed attention to this disease, which afflicts people without prejudice in every continent, ethnicity, race, colour, class and culture.2

The World Health Organization (WHO) reports, “The global burden of neurological and neurodevelopmental conditions is high, with approximately 70% of the burden in low- and middle-income countries. Neurological conditions are the leading cause of disability adjusted life years (DALYs) and the second leading cause of death globally, accounting for 9 million deaths per year.”3

WHO also declares Parkinson’s disease is the world’s fastest growing neurological condition.4

There is no cure. 

Globally, more than 10 million people know they have the condition.5 Many more live with it, but without diagnosis due to the lack of access to a medical professional.

Parkinson’s is a misunderstood disease and lack of awareness makes people with Parkinson’s vulnerable and discriminated against. People with Parkinson’s earn less money, have difficulty obtaining and retaining employment despite qualifications and ability. They often have to retire early. Due to the symptoms of the disease, PwP’s are often mistaken for being intoxicated and in some countries are considered to be cursed by witches. Many PwP’s live in constant pain. They often lose their voice, their confidence, the luxury of sleep and their ability to control their automatic functions, their limbs and their future.

Additionally, the mainstream drug to help manage Parkinson’s is Levodopa. It was discovered before the crew of Apollo 11 reached the moon. Yet, there are thousands of people with Parkinson’s living in poverty across the world, sometimes making the brutal choice between food for their family and medication for themselves. With a prescription of levodopa, people with Parkinson’s can continue to work, be a partner, a parent and contribute to society.

World Parkinson’s Day is on 11 April. This year it also is the first day of Parkinson’s Awareness Week.

Today the United Nations does not recognise either the day or the week.6

We are humbly and respectfully requesting World Parkinson’s Day and Parkinson’s Awareness Week be added to the list of other causes the United Nations does currently observe on their days of recognition. Additionally, we are requesting each of the Member States of the United Nations to support our call.  

The pledge of the United Nations is for “Peace, dignity and equality on a healthy planet.” We humbly request that you consider making the Parkinson’s community part of this pledge. To recognise World Parkinson’s Day and Parkinson’s Awareness Week would be a major step in raising awareness and reducing the vulnerability of people living with Parkinson’s disease.

Parkinson’s is a life sentence that is taking away our health. We should be grateful if you could support our call to keep our dignity and formally encourage the General Assembly to consider recognising 11 April as World Parkinson’s Day and the week of which it occurs Parkinson’s Awareness Week.

Please accept, Excellency, the assurances of my highest consideration.

(Signed) Larry Gifford

Founder

PD Avengers

1 PD Avengers website www.pdavengers.com

2 History of World Parkinson’s Day – Parkinson’s Life website 2015 https://parkinsonslife.eu/dr-parkinsons-birthday-a-date-to-remember/

3 World Health Organization “Brain Health: Burden” https://www.who.int/health-topics/brain-health#tab=tab_2

4 World Health Organization “Brain Health: Burden” https://www.who.int/health-topics/brain-health#tab=tab_2

5 Parkinson Foundation Statistics https://www.parkinson.org/Understanding-Parkinsons/Statistics

6 International Days and Weeks observed by the United Nations, United Nations website https://www.un.org/en/observances/international-days-and-weeks

#TogetherApart

If you want to contribute recorded videos to this Global effort to raise awareness for Parkinson’s disease, please click here to send us an email.