17 posts tagged “disease”

You can make a difference in April

Posted April 3rd, 2015 by

Eight years ago this April, the PatientsLikeMe Parkinson’s disease (PD) community launched, and now, more than 12,500 people are sharing about what it’s like to live with PD. What better way to recognize this awesome community than to participate in Parkinson’s Disease Awareness Month?

Listen to Leslie Chambers, the president and CEO of the American Parkinson’s Disease Association (APDA), explain the facts about PD in the video below:

As she says, 60,000 people worldwide will be diagnosed with PD in 2015 – that averages out to 164 people every day, or one person every nine minutes.

This April, it’s not just about the 12,5,000+ PatientsLikeMe members living with PD, or the 60,000 people who will be diagnosed in 2015 – it’s about everyone who is living and has ever lived with PD, and all their family, friends and colleagues who have been affected.

You can make a difference. The APDA is running a “30 days, 30 ways” campaign all month long, so be sure to check their website daily to learn how to get involved. The Parkinson’s Disease Foundation is also participating in raising awareness, and they’ve created a great toolkit to get you started. And don’t forget to share through the #PDawareness or #Parkinsons hashtags.

If you’ve been diagnosed with PD, join 12,500 others in sharing to live better, together.

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Patients as Partners: Hallucinations and Parkinson’s disease questionnaire results

Posted February 26th, 2015 by

It’s time for another Patients as Partners post, and today, we’re happy to share the results of the Hallucinations and Parkinson’s disease questionnaire.

In March 2014, more than 500 PatientsLikeMe members living with Parkinson’s disease (PD) took part in an Open Research Exchange (ORE) questionnaire about their condition. They worked with Dennis Chan and Ruth Wood from the University of Cambridge to understand a symptom called an extracampine hallucination, which is the sense of a presence beside or behind you even when there’s nothing or nobody there. So, unlike visual hallucinations, the presence can only be sensed or felt, not seen.

Everything the community shared will help researchers develop a new tool to better measure this type of hallucination and alert doctors and care teams to ask about this symptom earlier rather than later. Read the results here.

What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

Share this post on Twitter and help spread the word for Parkinson’s disease.