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Receiving a diagnosis of Parkinson’s disease (PD) can be a life-changing event, and navigating care options throughout the course of this neurodegenerative disorder can be overwhelming for people with PD and their loved ones. A PD diagnosis requires lifelong management of the disease and ongoing communication with healthcare providers to address each person’s unique experience with PD. As the disease progresses and symptoms evolve, some people with PD may become discouraged by the misperception that little can be done to address symptoms associated with disease progression. Fortunately, that isn’t the case, and people with PD should continue to speak with their care teams about their concerns.1,2,3 Healthcare professionals can provide guidance on care plans for people with PD, including treatment options and lifestyle adjustments, based on symptoms.
Understanding Parkinson’s Disease Symptoms
While every person’s PD is different, symptoms may include motor symptoms, characterized by abnormal movement or difficulty of movement like tremors or rigidity, and non-motor symptoms, such as fatigue, sleep disorders, memory problems and anxiety and depression.1,4,5 The current most commonly prescribed treatment for motor symptoms is a combination of two medications called carbidopa/levodopa. An increase or worsening of PD symptoms could be a sign that people with PD are experiencing disease progression. As symptoms progress, people with PD may experience more frequent OFF time, or periods of time when medications start to wear off between doses.6,7
Understanding OFF Time
PD is thought to be caused by low or falling levels of dopamine, a chemical that helps send messages to the part of the brain that controls movement and coordination.1,7Treatment with the combination of carbidopa/levodopa can make more dopamine available in the brain.6,7Usually, people on carbidopa/levodopa need to take pills multiple times per day to keep the dopamine levels in their brains steady. When the medication starts to wear off between doses, symptoms of PD can reappear, indicating that they may need to have their dose of carbidopa/levodopa increased.6,7
For people with PD already taking carbidopa/levodopa, it may be time to explore an adjunctive (add-on, or additional) treatment option — like one that blocks the COMT enzyme, which may help make more levodopa available to reach the brain.7,8 It may be worthwhile to speak with your doctor about your motor symptoms and treatment options that could help reduce OFF time and potentially provide more symptom-free time throughout the day.
Finding Motivation to Pursue Lifestyle Adjustments
When it comes to PD, lifestyle adjustments can also play an important role in addressing the signs and symptoms of the disease. For example, nearly three quarters of people living with PD experience micrographia, a cramped form of handwriting, and lifestyle adjustments like handwriting practice have been shown to help.9,10
To motivate people with PD to keep up with their handwriting exercises, Neurocrine Biosciences, a neuroscience-focused, biopharmaceutical company dedicated to discovering, developing and delivering life-changing treatments for Parkinson’s disease, created Parkinson’s Cards to Heroes. The program encourages people to practice handwriting through the act of transcribing messages of gratitude that are sent to everyday heroes, including the military and veterans as well as first responders and healthcare professionals on the frontlines of the COVID-19 pandemic.
“I was diagnosed with Parkinson’s disease four years ago and while my condition has fortunately progressed very slowly, I have a tremor in my left hand that I notice the most. Staying active and productive is important to me, so I was excited to get involved with Parkinson’s Cards to Heroes. The program provides a sense of purpose and writing cards is an opportunity to feel good about yourself while doing something positive. A true win-win,” said Allen, a Parkinson’s Cards to Heroes participant. “In recognition of Parkinson’s Awareness Month this April, visit the program’s website at www.pdcardstoheroes.com to order a kit and join me in getting started on your cards.”
Discussing Parkinson’s Disease Treatment Plans
From his care partners and loved ones to his doctors, Allen attributes his PD management to maintaining an open and ongoing dialogue with his care team about his PD symptoms. If you or a loved one with PD have experienced signs of disease progression and/or more frequent OFF time, be empowered this Parkinson’s Awareness Month to speak up. For more information about Cards to Heroes and to participate in the program, please visit www.pdcardstoheroes.com.
Parkinson’s Foundation. What is Parkinson’s.Global Burden of Disease Neurological Disorders Collaborator Group. Global, regional, and national burden of neurological disorders during 1990-2015: a systematic analysis for the Global Burden of Disease Study 2015. Lancet Neurol. 2017;16(11):877-897.Dorsey ER, Bloem BR. The Parkinson Pandemic–A Call to Action. JAMA Neurol. 2018;75(1):9-10. 9.Postuma RB, Berg D, Stern M, et al. MDS clinical diagnostic criteria for Parkinson’s disease. Mov Disord. 2015;30(12):1591-1601.Chaudhuri KR,Martinez-Martin P, Schapira AH, et al. International multicenter pilot study of the first comprehensive self-completed nonmotor symptoms questionnaire for Parkinson’s disease: the NMSQuest study. Mov Disord. 2006;21(7):916-923.Pahwa R., Factor S.A., Lyons K.E., et. al. Practice parameter: treatment of Parkinson disease with motor fluctuations and dyskinesia (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2006;66(7):983-995.Muller T. Catechol-O-methyltransferase inhibitors in Parkinson’s disease. Drugs. 2015;75(2):157-174.Bonifácio MJ, et al. Catechol-O-methyltransferase and Its Inhibitors in Parkinson’s Disease. CNS Drug Rev. 2007;13(3):352-379.Bryant, PT, et al. An Investigation of Two Interventions for Micrographia in Individuals with Parkinson’s Disease. Clin. Rehabil. 2010.Nackaerts, E., et al. Training for Micrographia Alters Neural Connectivity in Parkinson’s Disease. Front. Neurosci., 2018.