– Despite significant impact on daily life and the ability to treat primary symptoms of Parkinson’s disease dyskinesia (uncontrolled jerking or twisting movements), symptoms are often not recognized or discussed by those affected1 –
– Disease education campaign aims to increase awareness of Parkinson’s disease dyskinesia by educating the community with new online resources and encouraging conversations between people with Parkinson’s disease, their care partners, and physicians –
EMERYVILLE, Calif., Aug. 01, 2018 (GLOBE NEWSWIRE) — Adamas Pharmaceuticals, Inc. (Nasdaq:ADMS) today announced the launch of “Dyskinesia Is A Jerk,” an integrated disease education campaign focused on raising awareness about Parkinson’s disease (PD) dyskinesia and its impact, with an educational, supportive environment where people with PD dyskinesia and their care partners may share real-life experiences, have candid conversations, and unite as a community.
In the United States, PD affects close to 1 million people, and of those, between 150,000 and 200,000 people experience dyskinesia, which is different from tremors (shaking in the hands and feet) and is characterized by sudden, jerky, and uncontrollable movements in the neck/face, arms, legs, torso, or entire body that can worsen over time. 2,3,4,5,6 PD dyskinesia occurs as a result of disease progression and use of levodopa, a cornerstone of PD therapy, and can occur as early as seven months after starting treatment.2,7 Nearly 90 percent of people with PD will experience dyskinesia within 10 years of levodopa medication use.2
“Awareness of dyskinesia among people with Parkinson’s disease is suboptimal, with a proportion of people with Parkinson’s disease either partially or totally unaware of the presence of dyskinesia,” said Richard B. Dewey, Jr., M.D., Professor of Neurology and Neurotherapeutics and Director of the Clinical Center for Movement Disorders at the University of Texas Southwestern Medical Center. “Because dyskinesia can be confused with other Parkinson’s symptoms like tremors and can be disabling in and of itself, it’s common for those experiencing dyskinesia to feel helpless, frustrated, and without control. Ultimately, these feelings can lead to stigma, embarrassment, family tension, and depression. I think this disease education campaign can help open a conversation about managing dyskinesia between people with Parkinson’s disease and their family and friends.”
People with PD can unpredictably transition between dyskinesia and the “OFF” state upon waking and throughout the day.8,9 The term “OFF” refers to a period when people with PD are unable to move well and become rigid or can only move in a slow state, in spite of taking medication. Managing dyskinesia can be a balancing act for physicians and has a large impact on the ability to treat a patient’s PD symptoms, since reducing levodopa to mitigate dyskinesia can come at the cost of experiencing more “OFF” time.9 However, treating dyskinesia can improve functional time – that is, more “ON” time where PD motor complications are well controlled without dyskinesia – which may allow people with PD to resume their normal daily activities, including work and hobbies.
PD dyskinesia can have a significant impact on activities of daily living.10 According to a survey of 93 people with PD and their care partners, dyskinesia has a mild-to-moderate impact on:10
- Engaging in physical activity (85%)
- Working full-time (85%)
- Driving a car (75%)
- Engaging in daily activities (75%)
- Working part-time (70%)
- Socializing (70%)
The newly-launched campaign resources at DyskinesiaIsAJerk.com offer people with PD and their care partners a space to learn more about dyskinesia. An interactive Facebook community at facebook.com/DyskinesiaIsAJerk gives participants an outlet to share their experiences, discuss their frustrations, help others, and create an environment of understanding.
“The unpredictability of dyskinesia makes it difficult to feel in control, but it doesn’t have to be this way,” said Gregory T. Went, Ph.D., Chairman and Chief Executive Officer of Adamas Pharmaceuticals, Inc. “From the time they wake up, people with Parkinson’s disease must cope with the dyskinesia and OFF that come as a result of both disease progression and treatment. At Adamas, we seek to improve the lives of those living with neurological disorders by redefining the treatment experience. This campaign is just one part of our company’s holistic support initiative, which includes increasing awareness to spark conversations and providing tools for patients, their care partners, and physicians. Dyskinesia is, quite literally, a jerk, but it does not define people living with Parkinson’s disease.”
To learn more about the campaign, visit DyskinesiaIsAJerk.com or join the community at facebook.com/DyskinesiaIsAJerk.
“Everyone experiences Parkinson’s differently. As a result, it can be difficult for people with Parkinson’s and their care partners to understand the difference between Parkinson’s symptoms and medication side effects and how to best communicate their experiences to one another and to their doctors and wellness teams. ‘Dyskinesia Is A Jerk’ is a great step towards helping people understand and communicate about this challenging aspect of living with Parkinson’s.” – Davis Phinney Foundation
“The bad news is that many people with Parkinson’s disease are unaware of what dyskinesia is; the good news is that there are options and management strategies to help with this condition. ‘Dyskinesia Is A Jerk’ is an excellent and very easy to understand educational campaign about this very debilitating and often misunderstood symptom—dyskinesia.” – The Parkinson Alliance
“For people living with Parkinson’s, educational resources and community dialogue on issues like Parkinson’s disease dyskinesia—what it is, when to expect it, how to talk about it—is extremely valuable. We’re pleased to see Adamas Pharmaceuticals’ ‘Dyskinesia Is A Jerk’ campaign bring attention to PD dyskinesia and foster helpful conversations among those who experience it and their care partners and physicians.” – Parkinson’s Foundation
“APDA encourages people living with Parkinson’s disease to face their condition with hope and optimism. The ‘Dyskinesia Is A Jerk’ campaign brings attention to an often misunderstood symptom. Having information and resources to address the symptom will help people with Parkinson’s understand dyskinesia and discuss treatment options.”
– American Parkinson Disease Association
About Adamas Pharmaceuticals, Inc.
Adamas’ goal is to create and commercialize a new generation of medicines intended to lessen the burden of chronic neurologic diseases on patients, caregivers, and society using its deep understanding of time-dependent biology. For more information about Adamas and its unique approach to developing medicines, please visit www.adamaspharma.com.
MEDIA CONTACTS:
Katie Halper-Bogusky
Orangefiery
646-943-2121
katie@orangefiery.com
Terri Clevenger
203-856- 4326
pr@adamaspharma.com
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1 Pietracupa S, et al. Parkinsonian patients and poor awareness of dyskinesias. Front Neurol. 2014;5:32.
2 Ahlskog JE, Muenter MD. Frequency of levodopa-related dyskinesias and motor fluctuations as estimated from the cumulative literature. Mov Disord. 2001;16(3):448-458.
3 Marras C, et al. Prevalence of Parkinson’s disease across North America. NPJ Parkinson’s Disease. 2018;4(21):1-7.
4 Cilia R, Akpalu A, Sarfo FS, et al. The modern pre-levodopa era of Parkinson’s disease: insights into motor complications from sub-Saharan Africa. Brain. 2014;137:2731-2742.
5 Schrag A, Quinn N. Dyskinesias and motor fluctuations in Parkinson’s disease. Brain. 2000;123(11):2297-2305.
6 The Michael J. Fox Foundation. Dyskinesia. https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?dyskinesia – accessed on June 12, 2018.
7 Lennert B, et al. Assessment of Treatment Patterns and Patient Outcomes in Levodopa-Induced Dyskinesias (ASTROID): A US Chart Review Study. Am Health Drug Benefits. 2012;5(6):347-358.
8 Olanow C, et al. The scientific and clinical basis for the treatment of Parkinson disease. Neurology. 2009;72(21 Suppl 4):S1-136.
9 Aquino CC, Fox SH. Clinical spectrum of levodopa-induced complications. Mov Disord. 2015;30(1):80-89.
10 Dectiva. Adamas Parkinson’s Disease Quantitative Survey of Patients and Caregivers. Information on file.
