4 posts tagged “Parkinson’s quilt”

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

Posted November 2nd, 2010 by


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 4: Weaving An Inheritance

Posted October 26th, 2010 by

“I’ve had Parkinson’s for 15 years, and I feel like I can help people more by being vocal than I can by being quiet.” -Aunti J

Stand up and shout! Episode four of our new podcast series, “The Patient Voice,” is here!  For our next interviewee, meet Aunti J.  Like many others who contributed to the quilt, Aunti J wasfeatured in her local newspaper. She was proud to be raising awareness of Parkinson’s disease (PD) on behalf of all those represented through their patches on the PatientsLikeMe PD community quilt.

auntij-patch1Aunti J inherited her PD and has been living with it for most of her adult life.  While she has plenty of first-hand experiences with PD, she has also been a caregiver for someone with the disease – her father.  A wealth of knowledge with a big heart, Aunti J makes it a point to share as much as she can about what she has learned. When her father passed away, she came online looking for support and an opportunity to share with others.  The PatientsLikeMe PD community is thrilled that she found us!

With more than 200 patients with inherited PD on PatientsLikeMe, Aunti J was able to find patients just like her.  In fact, she tells a compelling story about how she also found others who were experiencing compulsive disorder as a side effect of their PD and describes feeling as if a weight had been lifted off of her shoulders.

Here is Aunti J’s story on PatientsLikeMeOnCallTM.

PatientsLikeMe member afleishman