30 results for “Parkinson's Awareness”

Faces Wanted: One Man’s Mission to Drive Awareness of Parkinson’s Disease

Posted June 15th, 2012 by

“I have a hope that this foundation has a short life. We exist to help fund and find a cure. To do that we need to generate and raise awareness of Parkinson’s disease and its impact to the public. Awareness in turn will aid in generation of funding. Funding for a cure and funding for the personal side of the disease. Programs to get people moving, walking, riding, dancing, and exercising.”

– Mike Justak,  Founder of Mike Justak Foundation for Parkinson’s Disease

When PatientsLikeMe member Mike Justak (MJUSAK) realized that Parkinson’s disease (PD) funding was lagging, he decided to take action.  His goal:  to “put a face to Parkinson’s” and highlight the fact that it occurs in patients under the age of 50 as well as older patients.

Mike founded the Mike Justak Foundation for Parkinson’s Disease, and this year he began working on a “Faces of Parkinson’s Video Wall.”  It’s a pastiche of videos submitted by PD patients around the country that he plans to submit to the Parkinson’s Action Network, state governors and US senators.  To add your “face” to the project, all you have to do is submit a short, close-up video stating who you are, where you’re from and what you do.  See Mike’s sample video submission below.

Having being diagnosed with PD in his mid-forties, Mike has also focused on raising awareness of young onset Parkinson’s disease (YOPD).  Check out the growing number of profiles of young onset Parkinson’s patients – from a musician to a teacher to an NBA player – on his foundation’s Younger Faces page.

As Men’s Health Week concludes, we’d like to honor Mike for his efforts as well as thank PatientsLikeMe members tiredoftired and Rick N for sharing their essays about depression and multiple sclerosis (MS) earlier this week.  We salute all of our male members for making their voices heard!


Observing Parkinson’s Awareness Month

Posted April 2nd, 2012 by

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.

The 2011 Parkinson's Unity Walk Had Nearly 10,000 Participants and Raised Over $1.5 Million for Parkinson's Research

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.

A Snapshot of the Parkinson's Community at PatientsLikeMe

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.