Since 2010, April has been designated as Parkinson’s Awareness Month by the US Senate.  The goal is to shine a spotlight on the national impact of Parkinson’s disease (PD), which affects more than one million Americans.  A progressive disorder of the nervous system, PD is often marked by muscle tremors, muscle rigidity, decreased mobility, stooped posture, slow voluntary movements and a mask-like facial expression.

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.

PD was one of the flagship conditions at PatientsLikeMe, and today we have more than 6,100 patients who report the disease.  What are they doing to cope?  Some of the most commonly reported treatments include prescription drugs such as Carbidopa-Levodopa (Sinemet), Ropinirole (Requip), and Rasagiline (Azilect); procedures such as Deep Brain Stimulation (DBS) and acupuncture; and supplements such as CoEnzyme Q10.  Click on each treatment to see how our patients rate the effectiveness, side effects, cost and more.

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.

On Tuesday, our interview with blogger Steve Ploussard of “Attitude & Fitness Wins” revealed how one person is managing his Parkinson’s disease (PD).  Today we take a closer look at this progressive neurological condition using the data and experiences shared by our 5,920 PD members.

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.”

Other commonly reported PD treatments include prescription medications such as Ropinirole (Requip), Pramipexole (Mirapex), Rasagiline (Azilect) and Amantadine; OTC supplements such as CoQ10; and surgical procedures such as Deep Brain Stimulation (DBS).  Click on the treatment name to see the data we’ve amassed for each, including hundreds of treatment evaluations submitted by our patients.

This is just a sample of the wealth of experience and data to be found at PatientsLikeMe.  Dive in today to learn more about PD.

“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.

Inspired by his Parkinson’s “family” (as he calls them), VigWig plays a more active role in the PatientsLikeMe PD community, and in raising awareness about PD. His story was published in the The Courier of Montgomery County, and VigWig submitted quilt patches to Parkinson’s Quilt Project (coordinated by the Parkinson’s Disease Foundation and displayed at the World Parkinson’s Congress). An honest-to-goodness story about an online “family” rallying together to support one of their own…here is our interview with VigWig.

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.

DID YOU ALSO KNOW…

• More than 1,500 of our patient members are 50-yrs old or older
• 140+ of our patient members have inherited Parkinson’s disease (PD), and a handful of people have the less common drug-induced Parkinsonism and Vascular Parkinsonism
• Approximately 10% of our patient members (or 331) are Young-Onset Parkinson’s patients; that is, they report having experienced their first symptom before the age of 40.

How are our members treating their condition?

• Patients are using more than 1200 treatments, including prescription drugs, supplements, over-the-counter medications, medical devices, life-style modifications, therapies, etc.
• The top lifestyle modification reported by our patients is physical exercise;  and walking is the #1 exercise cited.
• The most widely used prescription drugs reported by members are Carbidopa-Levodopa (Sinemet), Pramipexole (Mirapex) and Rasagiline (Azilect)
• Top 3 supplements: CoQ10 Coenzyme Q10, Multivitamins and Omega 3 Fish Oil

What are their major symptoms?

• For more than 1,300 patient members, a “tremor” was their first symptom of the condition.
• The 5 most common primary symptoms reported include: Stiffness/Spasticity, Slowness, Fatigue, Excessive daytime sleepiness (somnolence) and Insomnia.

What are they talking about?

• 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.