The Patient Voice | Episode 5: A Little Elbow Grease and a “Can Do” Attitude

Posted by admin | November 2, 2010


I don’t think about what I can’t do,
I think about what I can do.  – Cher441

cher441patch

Over the past month, we’ve heard several stories about how PatientsLikeMe Parkinson’s Disease community members came together online and made a quilt that has traveled all around the world providing warmth, comfort and a sense of unity for each of its recipients. So where is the quilt now and what is it being used for?

I recently sat down with member Cher441, who currently has the quilt. An advocate for raising awareness about Parkinson’s, Cher441 is involved with many support groups including, The Courageous Steps Group, The Parkinson’s Disease Bootcamp group, The Ohio Parkinson Foundation Northeast Region group, as well as several other local awareness groups near her.  Recently, The Courageous Steps and Parkinson’s Disease Bootcamp groups hosted events where Cher441 brought the quilt for everyone to see.

Being a member of so many groups didn’t come easy to Cher441 in the beginning and she credits the connections she has made through PatientsLikeMe as the kick-start for her involvement in everything else.  Listen in to my conversation with Cher441 about how she has been using the quilt to raise awareness about Parkinson’s Disease.

As this podcast series about the PatientsLikeMe Parkinson’s quilt comes to an end, there’s no doubt that the story goes on.  Thank you to all of my guests who have contributed to this first series, including PokieToo, Browncat, VigWig, Aunti J and Cher441.  You’ve warmed and inspired us all with your pieces of this quilt.

Stay tuned for more of The Patient Voice in the coming weeks.

PatientsLikeMe member afleishman

The Patient Voice | Episode 2: The Warmth Of A Quilt

Posted by admin | October 12, 2010

browncat-patch1“When I saw the quilt, I was like, ‘Oh my gosh! It’s beautiful!’…I felt like I was visiting with all of these other people.” – BrownCat87

Wrap yourself up with the PatientsLikeMe Parkinson’s Disease quilt and Episode 2 of “The Patient Voice” podcast series. In our first episode, we heard from PokieToo, creator of the PatientsLikeMe Parkinson’s Disease quilt, and learned about how it all got started.

Today’s guest is BrownCat87, an active member of the PD community who contributed to the quilt.  In this podcast, BrownCat87 shares about everything from her experiences with depression to how DBS has helped her manage her condition to how this quilt made her feel like she was a part of something special.  Listen in!

PatientsLikeMe member afleishman

New Podcast Series: “The Patient Voice” Premieres This Thursday

Posted by admin | October 5, 2010

On Thursday October 7, 2010, the PatientsLikeMeOnCall TM podcast is proud to present a new series called “The Patient Voice.”  Through these podcasts, you’ll hear emotional and inspiring stories from our community members that demonstrate the type of sharing and positive connections being made by patients on our site and how these connections are affecting their lives.

pdquiltFor the first run in the series, we’ll be focusing on the PatientsLikeMe Parkinson’s community and hearing from members about a very special handmade quilt.  A few years ago, members of this community came together online and decided to create the quilt as a fun activity to get them through the winter season. Each patch of the quilt is designed by a different member of the community and demonstrates, in a very personal way, something about the individual and her/his experience living with Parkinson’s disease. Initially a fun passion project, the quilt has become an expression of the power of community. Little did the quilters know how much their project would end up impacting their lives, the lives of other members, and, even beyond that, the lives of people in the Parkinson’s disease community as a whole. This quilt has traveled all over the world; it’s been featured in countless news publications spotlighting our members and their work with Parkinson’s disease; it was spotlighted by the Dartmouth Hitchcock Medical Center in their Health Living & Learning conference brochure; and it was, in part, the inspiration for the Parkinson’s Quilt Project being pulled together by the National Parkinson’s Foundation.

In this five part series, we will be talking to some of the members who contributed patches to the quilt as well as other people who have been touched by the quilt. To get you geared up for this series, here is a quick clip from our interview with PD community member, BrownCat.

The premiere launches this Thursday (October 7th) at 2pm EST with an interview with PokieToo, and the other interviews will run every Tuesday following.  To listen to the series, you can subscribe to our iTunes page or you can find our podcasts on our PodBean page. Get ready to be moved by “The Patient Voice”…

PatientsLikeMe member afleishman