Illuminating the Night: Understanding Parkinson Nighttime Symptoms

Commentary
Article

Larry Gifford, a patient living with Parkinson Disease and president of the PD Avengers, discussed sleep issues and nighttime symptoms faced by millions of patients with the disease worldwide.

Larry Gifford, President of PD Avengers

Larry Gifford

Credit: Facebook

I was in the fight of my life: running, punching, kicking, darting, and ducking to keep safe and then I was screaming full throated. Gunfire all around, my dad – long diseased – tossed me his sidearm. My family was under attack. I was shot but was wearing a bullet proof vest. Even so, the impact drove me back and my feet betrayed me. I fell, flailing, at least 100 feet. 

“Honey. Honey…” My wife Rebecca called out. “Larry!” she learned early on in our marriage that saying my name is an instant attention grabber. We locked eyes as I fell staring up at her. Then just before impact, I awoke - dazed and confused.

“What?” As I said it, I knew. I was drenched in sweat. I was acting out my dreams again and my dear wife was doing her best to avoid my fists and feet. She didn’t say anything. She didn’t have to. I retired to the living room sofa for the remainder of the evening. We haven’t slept in the same bed for more than a year now.

For nearly 10 million patients worldwide, Parkinson disease (PD) transforms precious sleep time into a battleground between exhaustion and insomnia.

REM Sleep Behavior Disorder (RBD) is just one issue. RBD is a prodromal symptom of PD often appearing years ahead of the onset of motor symptoms. RBD is characterized by the acting out of vivid, often unpleasant dreams during REM sleep. Normally, the body experiences muscle paralysis in REM sleep, but in up to 70%3 of patients with Parkinson the body fails to do so.

It is these automatic systems in combination with the tell-tale signs of PD which are rarely discussed among patients and peers or movement disorder specialists that are cause for concern. Patients with PD and their care partners deal with this delicate dance of rest and restlessness every night.

Nighttime symptoms of PD can vary in severity and impact, but they commonly include sleep disturbances like RBD, nocturia, and increased motor symptoms.

Nocturia, or frequent urination during the night, is common2. This can result from various factors, including medication adverse effects, bladder dysfunction, or sleep disturbances. The constant need to wake and use the restroom can lead to sleep fragmentation, exacerbating fatigue and daytime sleepiness.

The nighttime can also exacerbate motor symptoms in Parkinson, such as tremors, rigidity, and bradykinesia. The lack of movement during sleep can lead to muscle stiffness and discomfort upon awakening, making it challenging to start the day feeling refreshed and energized.

The SLEEP study, conducted by PD Avengers3 and sponsored by AbbVie, is a groundbreaking survey endeavor, now available in 6 languages, focusing on understanding the underlying mechanisms of sleep disturbances in Parkinson. By investigating the relationship between PD pathology and sleep dysfunction, this survey aims to inspire industry partners to develop targeted interventions to improve sleep quality and overall well-being for individuals living with Parkinson and their care partners.

The PD Avengers are dedicated to illuminating these issues, offering support, and driving progress toward better management and treatment of Parkinson symptoms 24-hours a day.

REFERENCES
1. Diaconu Ș, Falup-Pecurariu O, Țînț D, Falup-Pecurariu C. REM sleep behaviour disorder in Parkinson's disease (Review). Exp Ther Med. 2021;22(2):812. doi:10.3892/etm.2021.10244
2. Diaconu Ş, Irincu L, Ungureanu L, Țînț D, Falup-Pecurariu C. Nocturia and Sleep in Parkinson's Disease. J Pers Med. 2023;13(7):1053. Published 2023 Jun 27. doi:10.3390/jpm13071053
3. PD Avengers. 2024. Global Alliance to End Parkinson’s Disease. Accessed April 18, 2024. https://www.pdavengers.com

Larry Gifford is the cofounder of PD Avengers, a global initiative dedicated to ending PD. He uses his unique talents to raise awareness of PD, battle the stigma surrounding it, normalize its symptoms, and educate and empower patients living with Parkinson. Larry also hosts podcasts, webinars, and Parkinson IQ + You events for The Michael J. Fox Foundation (MJFF). In addition, Larry cohosts the podcast "When Life Gives You Parkinson’s," which is a platform where he and Rebecca share their journey with PD.

Related Videos
Ro'ee Gilron, PhD
Monica Verduzco-Gutierrez, MD
Shahid Nimjee, MD, PhD
Peter J. McAllister, MD, FAAN
Video 6 - "Utilization of Neuroimaging in Alzheimer’s Disease"
Video 5 - "Contribution of Multiple Pathways to the Development of Alzheimer’s Disease"
Michael Levy, MD, PhD
© 2024 MJH Life Sciences

All rights reserved.