Parkinson’s activists been coming together for the last 17 years for the Parkinson’s Unity Walk, held annually in New York City’s Central Park at the end of April. (The 2012 event takes place on Saturday April 28th.) Now, with Parkinson’s Awareness Month surrounding it, there is a month-long effort to raise awareness and research funds. One of the driving reasons is that PD complications are the 14th leading cause of death in the US.
We also have an active Parkinson’s Disease Room in our forum, where more than 7,000 patients are discussing 12,000+ topics. To date, we’ve logged more than 100,000 forum posts about PD! What are patients talking about? Some recent threads include:
Do you have a caring doctor?
Dealing with sadness and stress
Knitting: therapeutic or tortuous?
The neglected pain of Parkinson’s
Resigned from my job today
For more insight into living with PD, stay tuned for our interview later this week with PatientsLikeMe member Jim Atwell, author of Wobbling Home: A Spiritual Walk with Parkinson’s.
Taking a look at the makeup of our PD community, 52% are male, and 48% are female. More than 98% identify PD as their primary condition, and just shy of 20% report experiencing their first symptom between the ages of 50 and 59. Others report experiencing their first symptom anywhere from adolescence to their seventies. (See the chart for a complete breakdown.) What exactly are the symptoms of this condition? Some of the most commonly reported include stiffness/spasticity, slowness, sexual dysfunction, memory problems, excessive daytime drowsiness and constipation.
As Steve’s interview revealed, Carbidopa-Levodopa (Sinemet) is one of the most commonly prescribed treatments for PD as it helps to control tremors, one of the most visible manifestations of the disease, and other movement dysfunctions. Currently, more than 1,698 members report taking this medication, and 300+ of them have submitted Sinemet treatment evaluations, which review the drug’s effectiveness, side effects, dosage, cost and more. Here’s what one patient writes about Sinemet on her evaluation: “I notice my leg limp and motivation to walk improves dramatically when it kicks in. The tremor is much less.”
“I’ve met a lot of people from all over the world,
we are all one happy family.” – Vigwig
Around and around we go, strap on in for Episode 3 of our podcast series, “The Patient Voice.” To continue with the PatientsLikeMe Parkinson’s Disease (PD) quilt story, our guest today is community member VigWig. A few years back, VigWig underwent surgery for DBS (Deep Brain Stimulation). As word spread throughout the community, Vigwig’s online friends arranged for the quilt to be there waiting for him when he returned to his room from surgery.
Posted by Lori Piscatelli Scanlon | April 19, 2009
It’s Parkinson’s Awareness Month. As we continue to spread the word about this condition, we wanted to tell you a little bit more about our PatientsLikeMe Parkinson’s community. Launched two years ago this month, the community has steadily grown to include more than 3,400 patients. Below are some interesting facts about the community, as well as an interview with one of our members (“PokieToo”) giving her real-world experience of living with condition.
WHAT’S IT LIKE LIVING WITH PARKINSON’S DISEASE (PD)?
Meet PokieToo. A long-time member of our PD community, she tells us how she continues to “look for the sunshine” while “taking 30 pills a day.” “Out there for the next person,” PokieToo gives us a glimpse of the real-world experiences of living with Parkinson’s disease.
Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Sinemet, Mirapex, Deep Brain Stimulation/DBS and Exercise), symptoms like tremors and depression, as well as other hot issues like SSDI (Social Security Disability Insurance), the annual Parkinson’s Unity Walk, stem cells, clinical trials and research.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.