“Autumn Still Life with Mouse” by PD member J. Marley
If you’re a PD patient with an artistic bent, we encourage you to share your work with our community. You may also want to participate in the Parkinson’s Disease Foundation’s Creativity and Parkinson’s Project, which “exists to explore, support and encourage the therapeutic value of creativity in Parkinson’s.” Paintings, drawings, photographs, songs, crafts and more are displayed in the project’s Gallery of Artwork, and a wall calendar is created each year featuring the work of 13 selected artists.
Notice of Copyright: The works of art featured in this post are displayed with the written consent of the artist and/or current owner. These parties retain exclusive rights of reproduction and distribution. Any unauthorized reproduction or download of content in any form is a violation of the artist’s copyright and is prohibited.
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.”
The theme for this year’s World MSA Day is “A Mile and a Candle.”All around the globe, MSA activists will be lighting a candle today at 8:00 p.m. local time for one hour.Participants are being asked to light a candle for each person they know who is living with MSA or has been lost to MSA.As candles are lit across every continent, a virtual 24-hour wave of light will be created as it moves from time zone to time zone.
In addition, activists will be walking a mile (or more) in honor of MSA, then reporting their mileage on the “A Mile and a Candle Counter Page.”The goal is to tally enough miles from enough participants to equal 24, 901 miles, which is the circumference of the earth at the equator.If this goal is accomplished, MSA Day supporters will have “walked around the earth” to raise awareness of this little-known disease.
Muscadol is an international brand of medication that combines acetaminophen, a widely used analgesic (pain reliever), with orphenadrine citrate, a skeletal muscle relaxant. It is used in the treatment of muscle spasm and tremors associated with various musculoskeletal conditions.
If you’ve been prescribed Muscadol or another anti-spasm/anti-tremor muscle relaxant, we encourage you to share your experiences (including side effects, dosage, effectiveness, cost and more) to help other patients. PatientsLikeMe’s unique data-sharing platform allows you to share detailed data about all types of treatments, interventions and lifestyle modifications that have helped you or simply had no effect.
JOIN PATIENTSLIKEME TODAY
Have you taken Muscadol? Join PatientsLikeMe and add your experiences to our growing body of knowledge. Then, stay to exchange advice and support, research common treatments and learn from other patients like you.
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.