Uniting for Parkinson's on the 200th Anniversary of the Disease

Four groups share why they must build unity to chart a better course for the future of Parkinson’s care.

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John, who lives with Parkinson's disease, walks with his wife.

The Future Starts Now

It’s been 200 years since Dr. James Parkinson penned the “Essay on the Shaking Palsy” based on his observations and interviews of six people in East London who exhibited similar symptoms for what was then an unnamed condition.

Dr. Parkinson’s essay set a new course for Parkinson’s disease when, 40 years later, French physician Jean-Martin Charcot read the essay and added two more symptoms from his observations of hundreds of patients.

Those symptoms – tremor, rigidity, slowness of movement, postural instability, small handwriting and facial masking (when facial expression is lost) – are considered the hallmarks of Parkinson’s today.

We spoke with the European Parkinson’s Disease Association (EPDA), the American Parkinson Disease Association (APDA), the Parkinson’s Foundation (PF) and the Brian Grant Foundation (BGF) about their plans for World Parkinson’s Day, April 11, and Parkinson’s Awareness Month (U.S. only).

Here, they share what they want others to know about Parkinson’s, their hopes for the future and how they all #UniteforParkinsons.

Interviews have been edited for length and clarity.

What We’ve Learned

Q: What have you learned about Parkinson’s disease since you’ve worked at your organization?

Dom Graham, head of strategy and project development, European Parkinson’s Disease Association: I have seen how challenging and debilitating the condition is, and have been shocked to learn how it can negatively affect someone’s everyday life. All the things you might associate with Parkinson’s, I learned very quickly that’s just scratching the surface. It’s such an individual condition and affects people in so many different ways. And (I’ve learned) how inspiring people with Parkinson’s are – and their families and caregivers, too, because their lives are affected in significant ways.

Stephanie Paul, vice president, development and marketing, American Parkinson Disease Association: One of the reasons I came to the APDA is because of my passion for putting an end to neurodegenerative diseases which rob people of so much. What I’ve learned is for every individual diagnosed, you have a disease that plays out differently. The challenge is every single person has to figure out the best way to live with Parkinson’s. Since there is no cure, the best line of defense is to do all we can to make each day better from a medical or treatment standpoint. For me, it’s (about) looking at each individual so APDA can serve them by supporting them as they navigate this disease and give them tools so they can achieve the best quality of life.

Leilani Pearl, vice president, marketing and communications, Parkinson’s Foundation: We’re learning more and more each day about Parkinson’s – that’s what’s so exciting. We’re conducting research through our Parkinson’s Outcomes Project, which we started seven years ago and now we’ve amassed data on 9,000 patients across the U.S. and the globe where we’re tracking their care over time. It’s a longitudinal study where we’re noticing trends and sharing information with the Parkinson’s Foundation Centers of Excellence and patients about what (approaches) are achieving the best outcomes. Until there’s a cure and we’re all working toward it – until that day, we’re focused on how we can help people live with the disease today.

Katrina Kahl, executive director, Brian Grant Foundation: First and foremost, it’s a much more complicated disease that includes not just motor symptoms but also emotional and cognitive changes. Over the last 10 years, I’ve seen how much more we’re learning about exercise, nutrition and emotional health, and how it’s helping people manage the condition. The focus of our foundation is on a cure – which is important; research is always important and we all want a cure – but there are things we can do to help people manage the disease today.

I want to help (the public) understand what the challenges of the disease are, so people with Parkinson’s can feel comfortable out in the community.”

Katrina Kahl, executive director, Brian Grant Foundation

What Others Should Know

Q: What would you want people who are unfamiliar with Parkinson’s disease to know?

Graham (EPDA): That Parkinson’s is so much more than a movement disorder and so much more than tremors. In the wider world people just assume it’s ‘the shaking disease.’ It’s a far more challenging disease than people think.

Paul (APDA): Number one, I’d like people to know that they’re (likely) going to know somebody who has Parkinson’s. They need to understand the disease because it’s going to happen to someone they know. Number two, if you are diagnosed you can face it and you can have a good quality of life. Parkinson’s disease is not a death sentence, it’s a chronic disease and you can find ways to learn to live with it. We’re here to help people do that.

Pearl (PF): One thing we’ve stressed quite a bit is to recognize the early warning signs of Parkinson’s. It’s one of the most popular pages on our website. It’s so important for people to educate themselves on the early warning signs, motor and non-motor, so they’re able to recognize these signs in their loved ones.

Kahl (BGF): I’d like people to have a broader awareness of what this disease is and how it affects people. What we’re trying to do at the Brian Grant Foundation is keep people social, keep them going out and being a part of the community. So I want to help (the public) understand what the challenges of the disease are, so people with Parkinson’s can feel comfortable out in the community.

What’s Left to Be Done

Q: What needs still exist within the Parkinson’s community?

Graham (EPDA): Definitely research, but our focus as an organization is to improve the lives of people with Parkinson’s disease, who are living with the condition today. People diagnosed today may live with it for the next 10 to 20 years before there, hopefully, is a cure. From an EPDA perspective, we want to: advocate for people with Parkinson’s disease and their families to get the right treatment at the right time throughout their journey; ensure people with Parkinson’s disease receive appropriate treatment and individualized care; raise awareness of the complexities of Parkinson’s and impact on quality of life; and finally, support the global Parkinson’s community in the search for a cure.

Paul (APDA): Raising awareness so people understand the early and less obvious signs of PD. If people recognize that a loss of sense of smell or sleep issues could be early indicators of the disease we have a chance of providing intervention earlier on in the course of the disease. Additionally, reaching underserved populations is important and making sure everyone has access to the best care possible is critical.

Pearl (PF): Parkinson’s doesn’t know any boundaries. It affects people regardless of race, gender, ethnicity, geographic location. What we’re trying to do is make sure there is access to resources and expert care by reaching out to underserved communities so that they know they’re not alone in facing this disease.

Kahl (BGF): Clearly, above all, we need a cure. Along the way, treatments are getting better and we are seeing advances. We’re also seeing more research around the lifestyle factors that can help with the disease. I’m very interested in how much progress has been made about how exercise can support people with Parkinson’s – how you can use movements to counteract some of the limitations that come with the disease. Another thing I care about is nutrition. We know there are certain things people can eat to help with some of the symptoms, like constipation. We’re also interested in research around the emotional changes. Brian has been fairly public about his struggles with depression, so I’m also excited to see so many more organizations telling people ‘you may experience depression and should be aware of it and this is what you do to feel better.’ It’s such a debilitating symptom of the disease, and Brian is out there saying ‘hey, I’ve experienced this.’ This is an athlete so you don’t expect to hear him talk about those emotions, but it’s a part of the disease.

In 200 years, I’d hope there would be no such thing as Parkinson’s – that it would be one of those ancient words that nobody remembers.

Stephanie Paul, vice president of development and marketing, American Parkinson Disease Association

The Hope for Patients in the Future

Q: What can we hope for in the next two years, 20 years and 200 years?

Paul (APDA): So in two years, it’s about raising awareness and providing resources for those impacted by the disease. The keys are access to care for the underserved, and ensuring the best care possible for everybody. APDA works very hard to expand our reach presence across the county. In two years, we hope that we reach many more people and are helping them learn how to live a better life.

In 20 years, I would expect and hope that we finally understand what causes Parkinson’s disease and have identified ways to stop the progression of the disease.

In 200 years, I’d hope there would be no such thing as Parkinson’s – that it would be one of those ancient words that nobody remembers. Especially since now, 200 years after Dr. Parkinson published the 'Essay on the Shaking Palsy,' we don’t have a cure.

Pearl (PF): We’re really excited about the future because we’re finding there’s so much people can do to live well with Parkinson’s today. The research on the benefits of exercise is quite staggering. There are things people can do today to slow down the progression of symptoms. Exercising at least two hours a week is one way to provide neuroprotective benefits to people with Parkinson’s. Everyone’s got a Fitbit or smart phone; I think you’ll hear more about wearable technology in the future. Right now we’re engaging in a lot of telemedicine studies so that eventually anyone with an internet connection could talk with a virtual specialist.

In June, we are celebrating the 200th anniversary of James Parkinson’s essay, inviting researchers to come talk about where we are now and where we hope to be. I think we’ll be able to come out of that conference with clear insights into the future.

Kahl (BGF): In two years from now, I would hope that the research around nutrition comes as far as the research on exercise is now. I tell people that if you had a friend with heart disease and they said “nobody talked to me about diet,” you would think it’s not very good care. I would like to see everybody aligned to what a good sound diet looks like for people with Parkinson’s disease, just like they do with heart disease.

Twenty years from now I think we’ll have really good transformative treatments that are helping people live their lives every day. And in 20 years, hopefully we also have unity in the community … so that society at large will understand what Parkinson’s is and will be more understanding of the condition.

In 200 years I hope we’re not even talking about Parkinson’s because there’s a cure.

Uniting for Parkinson’s Right Now

Q: What is #UniteforParkinsons and how are you participating?

Graham (EPDA): 2017 marks 200 years of Parkinson’s disease We started thinking a year ago about how we can raise awareness in this time. There are so many challenges in the Parkinson’s disease world, so many ways to tackle it, that we had to ask ‘what do we do first?’ We decided to keep things simple but effective. For us, social media is the best way to do that. We aim to raise more awareness about Parkinson’s in one day – April 11 – than has ever happened before and also establish World Parkinson’s Day as a truly global day with #UniteforParkinsons.

Paul (APDA): For APDA, every day is Parkinson’s awareness day. Everyone is invested in raising awareness in April, especially around World Parkinson’s Day, but every day of the year we focus on raising awareness and reaching out to serve people with Parkinson’s disease. #UniteforParkinson’s is a terrific program. APDA is also excited to be kicking off our own new campaign on April 11.

Pearl (PF): Our organization is going to be active throughout World Parkinson’s Day on Facebook and Twitter and look forward to interacting with others in the Parkinson’s community. We’ll also share “My PD Story” from our website, which is videos of people who live well with the disease and encourage others to share their story throughout Parkinson’s Awareness Month.

Kahl (BGF): We’ll be sharing content on our Brian Grant Foundation social media network. We’re doing a 10-day challenge leading up to World Parkinson’s Day with a series of activities every day encouraging people to exercise, eat fruits and vegetables and hang out with friends – a broad range of things that make people living with Parkinson’s feel better. On World Parkinson’s Day we’ll celebrate people who participated in the challenge, highlight people living with the disease and engage with the #UniteforParkinsons content.

Along with our partners, AbbVie is committed to Parkinson's disease education to raise awareness about the condition, and to furthering research that seeks to improve the lives of those living with and impacted by this disease.

1 Palfreman, Jon, “Brain Storm: The Race to Unlock the Mysteries of Parkinson’s Disease,” p. 14-17. 2015.

2 Palfreman, Jon, “Brain Storm: The Race to Unlock the Mysteries of Parkinson’s Disease,” p. 14-17. 2015.
 

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