Q&A: Spark the Night aims to inspire conversations, drive change for Parkinson’s disease

Key takeaways:

• On World Parkinson’s Night, more than 300 sites around the world will light up blue for Parkinson’s awareness.
• The PD Avengers aim to add urgency to the cause of ending Parkinson’s disease.

On April 11, which marks World Parkinson’s Night, the patient-led organization PD Avengers will launch Spark the Night, a global initiative dedicated to raising awareness for Parkinson’s disease.

The Empire State Building, Willis Tower, CN Tower and more than 300 other landmarks and buildings around the world will be illuminated with blue lights to symbolize unity, support and visibility for the Parkinson’s community.

Larry Gifford, president and co-founder of PD Avengers, was diagnosed with Parkinson’s disease in 2017 at the age of 45 years. Since his diagnosis, he has co-founded the PD Avengers, launched his podcast, “When Life Gives You Parkinson’s” and continued to champion awareness initiatives and advocate for people with Parkinson’s.

Healio spoke with Gifford to learn more about Spark the Night and the PD Avengers’ mission to end Parkinson’s disease.

Healio: Can you describe your journey with Parkinson’s disease?

Gifford: My diagnosis came many years after initially seeing symptoms. I didn’t know they were symptoms because they were so disparate. I’d have a funky walk or small handwriting; I couldn’t keep up with notetaking or my hand wouldn’t go in my pocket. I’d have a little tremor here and there, but I never put it all together until I got the tremor in my hand.

My son, who was 5 years old at the time, told me I should go see a doctor, so I did. The doctor I first saw thought I had MS, but once I saw a neurologist, they said it wasn’t MS and that they were pretty sure I had Parkinson’s.

I said, “‘Pretty sure’ isn’t really what I’m looking for; I’m looking for a yes or a no.” The neurologist joked, “Well, there’s only one test I can give you, and that’s an autopsy.”

I said, “I’m definitely not ready for an autopsy, so we’ll hold off on that and I’ll take your word for it.”

Healio: How did the founding of PD Avengers come about? What are the goals of the group?

Gifford: PD Avengers was created during the pandemic. During that time, four prominent scientists and neurologists came out with this great book called “Ending Parkinson’s Disease.” I got a group of patients from around the world together to have a book club with it over a series of Zoom calls. We brought the authors on at one point, and they remarked that it was great we were engaged with the book’s concepts, but one of them said, “You know, it’s a prescription for action, not just for sitting around talking.” That was our call to action.

We officially launched PD Avengers about 3.5 years ago; Global Alliance to End Parkinson’s Disease is the official name, but PD Avengers looks better on a t-shirt.

Our goal is to end Parkinson’s disease, but until we get to that point, we aim to add urgency to the cause and improve the treatment of people who already have the disease so they can have a fulfilling life.

Healio: On the PD Avengers website, it states that “the silence surrounding Parkinson’s has persisted too long.” Why do you think Parkinson’s has gone unacknowledged and how are you looking to change this?

Gifford: There’s a lot of stigma around Parkinson’s. People don’t know what it is. People think it’s a hand tremor, and it’s not; it’s a lot more than that. It’s not just a motor disease; it’s a full body disease.

When I was diagnosed, I wondered, “How’s my wife going to feel about this?” and, “Will my job want to keep a guy who has a brain condition?”

I thought, “My son wants a real dad, not me; I’m sick.”

You have all these horrible things that play off in your head, and people with Parkinson’s don’t talk about it.

Ray Dorsey, MD, one of the authors of “Ending Parkinson’s Disease,” said in a podcast that if people with Parkinson’s don’t start sharing their stories, it will be difficult to raise enough money to do the research needed to make a change.

I thought, “Well, I’ve been a storyteller all my life in radio, and if I’m not willing to tell my story, how can I expect anybody else to?” With that, I launched a podcast, we formed the PD Avengers and the rest is history.

Healio: What are you hoping the global community can learn from Spark the Night?

Gifford: Spark the Night is a great initiative supported by AbbVie and Abbott. The global campaign is dedicated to raising awareness and fostering unity among the Parkinson’s community. Three core events that are part of this global initiative include Spark the Night with 10 million lights, a 24-hour Parkinson’s Around the World livestream and our SLEEP survey of people with Parkinson’s and care partners. The SLEEP survey, “Surveying Late Evening Effects of Parkinson’s,” delves into the often overlooked realities of how Parkinson’s disease profoundly impacts sleep and aims to shed light on the less understood symptoms and challenges of the condition.

These events will highlight the 24-hour impact Parkinson’s disease has on patients, as well as their caregivers and loved ones — with a special focus on how Parkinson’s disease affects sleep and the value of increasing “on” time.

It’s sort of like “the little cause that can.” It started off with us saying, “Hey, let’s light up some buildings.” Now, we have over 300 buildings worldwide that are committed to lighting up for Parkinson’s.

The big push is for awareness; we want people to notice and ask questions. We want people to ask why everything is blue so we can then explain to them that it’s for Parkinson’s and we’re “sparking the night” because we want people to be aware that the night and day symptoms are different.

People don’t really talk about the night symptoms because it’s a very lonely time. Your partner’s off to bed, you can’t sleep so you’re up until 2 in the morning in a separate room, you have REM sleep behavior disorder so you’re acting out your dreams or you have to get up 14 times to go to the bathroom. You just never know.

Healio: Does PD Avengers have any other ongoing initiatives that you’d like to mention?

Gifford: First, I’d like to reinforce that people living with Parkinson’s disease and their care partners share the same goal: to obtain more “on” time — for increased symptom relief, added time with friends and family and hope for a better quality of life. Don’t settle; does your doctor understand your morning, day and night symptoms?

Second, for those in the Parkinson’s community eager to contribute to the 15-minute SLEEP survey, it is available at www.pdavengers.com/sleepsurvey. The SLEEP survey offers an opportunity to share personal experiences and contribute to the collective understanding of PD-related symptoms and disturbances during sleep and at night. The survey is for people with Parkinson’s as well as their partners because we want to hear from both sides.

We really want people from all around the world to fill it out. By next week, the survey will be available in six different languages. It’s going to be cool to see the results of that survey, and I think they’ll give us a better sense of what people are going through and what they want and need, then we’ll be able to serve that up well.

Finally, for more information, please visit www.SparktheNight.org.

For more information:

Larry Gifford can be reached at larry@pdavengers.com.

References:

• PD Avengers. https://www.pdavengers.com/. Accessed April 9, 2024.
• How is your sleep? Sleep Survey. PD Avengers.  https://www.pdavengers.com/sleepsurvey. Accessed April 9, 2024.
• World Parkinson’s Night. https://www.worldparkinsonsnight.com/about. Accessed April 9, 2024