13 posts from February, 2013

The Ups and Downs of Parkinson’s Disease

Posted February 5th, 2013 by

We are all too aware that Parkinson’s disease (PD) is a progressive illness, with tremors, difficulty walking and other symptoms usually getting worse over time.  Here at PatientsLikeMe, and in the clinic, that progression is measured with the Parkinson’s Disease Rating Scale (PDRS). Although you can never really simplify a whole disease down to a few numbers, having that numerical description helps your health care team track your disease and how you are doing over the long haul.

But if you or a loved one has PD, you know that a decline over time is only part of the story. You probably have good days and bad days, depending on all kinds of factors. Understanding those ups and downs is also big part of living with PD. It may also be a big part of treating it.

A Sample PDRS Chart Showing Ups and Downs in Disease Progression

In collaboration with PatientsLikeMe’s Paul Wicks and MIT’s Max Little and Alex Pentland, I have been studying those ups and downs. In our freely available paper recently published in the Journal of Medical Internet Research, we explored mathematically the dynamics of the PDRS. (If you love math, this is the paper for you!)

One of the most important things we found is that these random fluctuations seen in many patients are large enough that they can be considered “clinically meaningful” – just as big as those long-term progression changes that doctors and nurses consider when they think about what treatments may be best for you. So, it is especially important for your team to know how you’ve been doing over the last few weeks, and not just today.

Knowing your own ups and downs may help you figure out your best possible treatment plan. We also hope that by studying the data shared by lots of people like you, we can understand PD better, which will ultimately lead to better treatments for everyone. As always, thanks for sharing!

p.s. For those of you keeping up, yes, the Max Little mentioned above is the very same applied mathematician we’ve partnered with to help advance his groundbreaking research at the Parkinson’s Voice Initiative.  Don’t miss this recent CNN profile of Max’s exciting project, which is based on the theory that the voice (as recorded via a simple phone call) can be used as a biomarker for PD progression.

PatientsLikeMe member tvaughan


First-Ever Rheumatoid Awareness Day

Posted February 2nd, 2013 by

In an ongoing effort to raise awareness, the Rheumatoid Patient Foundation (RPF) has now established February 2nd as Rheumatoid Awareness Day. This is the first time ever that a day has been designated for rheumatoid disease and it will give a voice to the millions who are living with this condition.

rheumatoid-awareness-day

Rheumatoid disease (also known as rheumatoid arthritis) affects nearly 2 million people in the U.S. and one percent of people worldwide. It’s a progressive inflammatory disease causing joint and organ damage that can lead to severe pain and joint disabilities. Studies have also shown that rheumatoid disease has an impact on the heart causing higher incidence of stroke for patients.

Want to get involved? The RPF is hosting several social media events and is asking everyone to share educational materials via social sites and blogs to raise awareness.

You can also connect with other rheumatoid arthritis (RA) patients just like you on PatientsLikeMe. Nearly 5,000 RA patients are tracking their health and learning from each other’s shared experiences every day. Add your voice to this growing community.


Mayo Clinic. 2011. Mayo Clinic Determines Lifetime Risk of Adult Rheumatoid Arthritis. http://www.mayoclinic.org/news2011-rst/6137.html?rss-feedid=1

Jesper, L et al. British Medical Journal. Risk of atrial fibrillation and stroke in rheumatoid arthritis: Danish nationwide cohort study. http://www.bmj.com/content/344/bmj.e1257