Parkinson’s Disease: Real-World Data, Real-World Experiences

Posted April 19th, 2009 by

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?

What are their major symptoms?

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.

7 Comments

  1. Great job on the article Paul. It was very informative and allowed me to get a feel for just how much impact the data collected from all of our patient profiles can be.

  2. Chronic pain is very severe and this affects people’s life, long known to people who suffered from a strange disease, were strong back pains, which were intense and not let them work, as was what they said were the doctor and he prescribed vicodin, hydrocodone, norco for pain, but knew it was a very powerful medicine, and moreover, anxiolytics, and worry that they were doing things that previously did not like eating too much, smoking, etc, and read in findrxonline that this drug is well and that we must be very careful with their use, and everything must be under medical prescription.

  3. Anyone have any experience with cats claw?

  4. […] Foundation Parkinson’s Quilt Project, and she’s the captain of our members’ Team PatientsLikeMe at the Parkinson’s Disease Unity Walk every […]

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  6. […] April is Parkinson’s Awareness Month – when the tulips bloom so don’t let the next link fool you: https://blog.patientslikeme.com/2009/04/19/parkinsons-disease-real-world-data-real-world-experiences/ […]

  7. […] April is Parkinson’s Awareness Month – when the tulips bloom so don’t let the next link fool you: https://blog.patientslikeme.com/2009/04/19/parkinsons-disease-real-world-data-real-world-experiences/ […]

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