Parkinson’s Disease

Share On: Parkinson’s Awareness Month and PatientsLikeMe PD Community Anniversary

Did you know this April is both Parkinson’s Awareness Month and the 2-year anniversary of the PatientsLikeMe Parkinson’s community?  We invite you to celebrate with us all month as we share real-world patient insights and experiences of living with this disease…and we ask you to share on! The PatientsLikeMe Parkinson’s community has come a long way since it launched in April 2007 – topping more than 3,400 patient members in just 24 months.  Our community members share so much about themselves on a daily basis – from details about how they manage their condition to their personal experiences and stories.  Why share?  Simply stated, to learn more about themselves while helping others better understand this condition.   In the spirit of awareness and sharing, this month we’ll share with you some of what we’ve learned so far from these inspirational individuals and keep it real with some personal patient stories about living with PD. Additionally, later this month, PatientsLikeMe is once again sponsoring the Parkinson’s Unity Walk (www.unitywalk.org), “the largest single-day fundraising event for the Parkinson’s community.”  The event, which brings together thousands of people touched by Parkinson’s, takes place every spring in New York City’s Central Park.  PatientsLikeMe members from …

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More Than Meets the Eye: Non-motor Symptoms in Young-onset Parkinson’s Disease

Most people think of Parkinson’s disease (PD) as a condition of aging, and most of the time they’re right. Looking at the population as a whole, about 1-2% of people over the age of 65 have PD, and it’s usually a condition that is most severe in patients in their 70’s and 80’s. However, about 10% of patients buck this trend and experience their first symptoms before the age of 40; these patients are known as Young-Onset PD or YOPD for short. The R&D team here at PatientsLikeMe recently carried out a research study examining an aspect of PD that has only recently gained much attention, “non-motor symptoms.” When a clinician diagnoses PD, they are usually looking for a triad of cardinal features, specifically tremor, slowness, and stiffness. However, in the past 5-10 years it has been increasingly clear that patients with PD also experience a number of non-motor symptoms, ranging from dizziness to constipation, from a loss of sense of smell to hallucinations, and from apathy to urinary problems. Several of our members had mentioned in forum postings that they were finding non-motor symptoms, such as cognitive confusion and fatigue, to be a particular burden, so we decided to …

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PatientsLikeMe at the Young-Onset Parkinson’s Network Conference

PatientsLikeMe was a proud sponsor of the National Parkinson’s Foundation Young-Onset Parkinson’s Network (YOPN) Conference in Atlanta, GA last week. The event, coordinated by and for people living with Young-Onset Parkinson Disease (YOPD), was a huge success. Paul Wicks and I (Maureen Oakes) enjoyed working at the booth, meeting many of our current members and spotting PatientsLikeMe t-shirts in the crowd. Paul was a presenter at the conference, and his session “Taking Control of Your Parkinson’s by Sharing Online” was well attended and received by current and future PatientsLikeMe members. One of the themes that came up repeatedly at the conference is that living with YOPD, like any other life-changing illness, can be a very isolating experience. The YOPN Conference presented its attendees the opportunity to spend the weekend learning more about their condition, expanding their knowledge about the latest treatments and choices, and most importantly, meeting other patients like them. As a community manager at PatientsLikeMe, much of my job is watching. I read the forum to observe what people are discussing, I look for questions and ideas on how we can improve different areas of the site, and watch as members learn and relationships grow. But, one of …

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