PatientsLikeMeInMotion at 2010 Parkinson’s Unity Walk

Posted April 30th, 2010 by

dsc06276Last weekend, we headed to New York City in great anticipation of the 2010 Parkinson’s Unity Walk held each year in Central Park.  We were excited once again to meet members of Team PatientsLikeMe, a group of patients who travel from across the country to meet one another and work tirelessly to raise money each year for the walk.  Team PatientsLikeMe raised $13,000 and came in as #13 of the Top 25 fundraising teams for the 2010 Unity Walk.

This year, some of the team members were reuniting at the walk after meeting at previous Unity Walks; others were meeting for the very first time.  The experience was inspiring and energizing.  What we were able to see first-hand is how consistently and plentifully patients share – both online and off.  In addition to sharing their health data and lives on PatientsLikeMe, we see how they also share their families, their stories, their dreams of a Parkinson’s-free future, and, at this unforgettable day in Central Park, their unwavering commitment to helping patients just like them.  Representative of the thousands of patients in our communities, members of Team PatientsLikeMe are full of hope and inspiration and plenty of energy.  We chased any person sporting a blue PatientsLikeMeInMotion t-shirt up and down “Find a Cure Boulevard” as they met other patients, registered at information booths, and took in the scene.  It wasn’t always easy to keep up!

dsc06271We finally pulled the team together (with the help of Team Captain, Pokietoo) as they posed for a team photo for the Unity Walk staff.  As we do each year, we took the opportunity to get some pictures and video of the team sharing their thoughts about living with Parkinson’s and their experiences on PatientsLikeMe.  Here’s a glimpse of a short video with Pokietoo telling us about the power of the patient voice.  Be sure to also check out this video of members of Team PatientsLikeMe sharing their thoughts about living with Parkinson’s disease.

Thanks to Team PatientsLikeMe for opening your hearts, your arms and your lives for us once again this year.  Thanks to our partners at the Unity Walk for creating such an amazing event for patients and research.  And thanks to all of you who share every day in our communities.  You truly inspire us.

PatientsLikeMe member mcotter PatientsLikeMe member lscanlon


4 Comments

  1. […] Continued here: The Value of Openness: The PatientsLikeMe Blog … […]

  2. I had so much fun at the Walk this year as I hope everyone around me did. Lori loved the time spent with you and your husband and Mr. T are we on for next year? Our contribution to the PDF Quilt Project in Scotland in the fall is done all 16 panels…almost all mention PLM in some way. Keep up the good work and Paul is right look out 2010 and 2011!!!!! love Pokie

  3. I had a brain operation in July 2007 and I was going lets say OK but I had to be very careful. Stay home and do nothing nothing. I( have to pay attention with all my movements but my memory also is going……. out and I do create problems to my self and others. I was OK until a Doctor did changed my medication. I was removing Dilantin (500mg) a day to 300mg and was adding a new medication vimpat 50 mg a day for a week and to reach 8 a day. As soon I reach 5 a day I had my 40-50 episodes. I end up at the ER and a Doctor there told me that ” DO NOT USE THE ER OR THIS HOSPITAL ” for Charlie horses. I do know what it is Charlie horse because I had them quite often in New York city because I was walking most of the times out from the office to help the busines. I end up on another hospital that there they did remove those pills. Vimpat,Lexapro and one more and a new Doctor give me the new pill for me Lamotrigine`and I am a little better at this point. Who knows how far we can go with all changes with Doctors and medications.

  4. […] Direct Mail and Newsletters In addition to attending some events (e.g., 2010 Transplant Games, Parkinson’s Unity Walk) to talk directly to patients, PatientsLikeMe also reached out to medical centers (e.g., epilepsy […]

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