- 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 -
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
Orangefiery646-943-2121katie@orangefiery.com
Terri Clevenger203-856- 4326pr@adamaspharma.com_____________
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.
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