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.