Nancy Abraham & Brenda Tucker,
Co-founders of People Living with Parkinson's (PLWP)
and Team Captains with the Unity Walk put it in their own words…
June 9, 2005
How did PLWP get started?
Nan: Brenda and I had met in a chat room in Massachusetts General Hospital. We immediately liked each other and began getting to know each other better. After about a year, we decided to meet so I flew down to the Smokey Mountains of Tennessee. A friend of hers loaned us the use of a beautiful log cabin. We talked about Parkinson's a great deal. Anyway the weekend was a tremendous success. We had a blast and started brainstorming and daydreaming about developing our own website for Parkinson's.
We started researching the Internet for information about building the site that very week and at the end of December, 1999 we started what we thought was "just a website." For 3 months, we walked, talked, slept, ate and drank the website. Developing each page together and learning how to do it was tiring but we loved every minute of it. Every now and then our husbands would check to make sure we still existed. We did this with each of us in our own home, communicating and designing via the Internet and a zillion phone calls. We launched it on April 1, 2000! Although PLWP started if as a website we since expanded into a 501 (c)(3) organization. And PLWP continues to grow. We now have over 1200 members .We are very proud of our people and our organization. Please feel free to come check us out at www.plwp.org
How is the Parkinson's community supported through PLWP?
Nan: We feel it is very important that the Parkinson's community continue to be unified. It is how we continue to be productive and maintain momentum. We try to support the Parkinson's Community in any way that we can. Just to name a few: Every year since PLWP was organized, we have supported the Unity Walk by attending and promoting it. We believe it is a very important event because it funds a number of the Parkinson's organization that offer a great deal of support to those who have Parkinson's. Additionally, they support the tremendous research efforts that are going on. PLWP also promotes the advocacy efforts that are going on. We widely promote the works being done by PAN (Parkinson's Action Network)
Bren: We also are involved in the research area of the community in various unique ways. Our members participated in a Harris Interactive Survey regarding the symptoms Parkinson's to which the results were presented at the ANA Conference in 2003. This proved to be a new way of considering the symptoms that perhaps the problematic symptoms were not what they always had appeared.
We co-sponsored a work group of the NINDS regarding depression. As a result, a manuscript is soon to be published regarding diagnosing depression as it relates to Parkinson's. We are among the authors of this manuscript.
For the past several years, we have co-sponsored the Udall Centers of Excellence Conference and have participated in the discussions of the latest research within their realm.
What type of information is provided on your web site?
Nan: A great deal of it is educational. We also provide information to the community via our library and programs offered by other Parkinson's organization. Our website promotes Parkinson's events, member services, survey projects, Parkinson's programs. We take pride in the fact that our website continuously changes to meet the needs of our members.
Bren: We also hope that by giving the patients a place to record their experiences publicly, these experiences will be useful to the medical side of the fence. We know there have been occasions when patients and medical/research have teamed up thru our efforts and/or thru our website.
Tell me a little about yourselves and your families.
Nan: I have been married to my high school sweetheart for 31 years. We have two wonderful children Tim a high school science teacher and Kristin a job recruiter. I worked for 17 years at Bausch & Lomb in Regulatory Affairs before going out on disability 5 years ago. Now I spend my time on PLWP because I am a people person. In fact at the moment I am working on the 5th annual PLWP golf tournament to raise funds for our organization. But in my spare time I also love to cook, watch movies, talk to my friends and recently I just started getting into gardening.
Bren: I'm also married with two children, two grandchildren and one great granddaughter. After working in the business world for 35 years in several arenas, I retired on disability in 2000. At that time I managed a computer technical services department for a national magazine distribution company. In addition to spending valuable time with my family, my energies are devoted to PLWP. Management of an internet-based organization such as ours, where all are volunteers either have the disease or are affected by it in other ways is the most difficult challenge I personally have ever faced. But I must say the gratification greatly surpasses the challenge.
I'm finding areas of interest that when I worked, I had little time to investigate. Such as, I've written an unpublished novel, I'm into all types of painting and I'm teaching myself to draw. I'm really enjoying this part of my life as well.
Please provide your thoughts about what educational and support resources you use (friends and the support network of PLWP).
Nan: The Internet is an endless wealth of education. We are always researching what is out there. Our people are a tremendous resource to us as well. They are constantly willing to share knowledge and support to each other. We have also been very fortunate that over the years as being part of PLWP we have been able to expand our network. We have worked with many of the organizations on a variety of Parkinson's projects. We have worked with the Parkinson's Alliance, WE Move, the NIH, The Udall Center of Excellence, APT and so many others. Theses interactions have all been great learning and rewarding experiences.
Bren: One of the primary sources of education and support is the people. Nan and I have spent numerous hours listening to the people who are forced to allow a major progressive degenerative disease to control their world. We share their ups and downs ... some from a distance and others one on one. We hear them talk in terms of hope and despair, of ignorance and intelligence, of fear and of courage. And then we listen to those who choose to be affected by these same devastating conditions. Those who care about people diagnosed with the disease and make a conscious decision to be part of the hope and despair, ignorance and intelligence, fear and courage.
Where we encounter the bulk of these people is not in a church, not in a support group, not even in our 1200 plus membership chat room. We meet and share with these people in Washington, D.C. at an advocacy conference, in New York City at a walk to raise awareness and funds for Parkinson's, at a hearing defending patients' rights in clinical trials, etc. etc.
Where does PLWP fit into this scenario? We believe our role is to provide an environment for each individual who wants to make a difference. Whether it be helping the person find a forum for their particular advocacy, researching information, helping a newly diagnosed, sending cards of encouragement or just sharing a chat in the chat room.
How did you come to hear about the Unity Walk? What was PLWP's first experience with the Walk like?
Nan: I came to hear about the Unity Walk by a fellow Parkinson's friend from Florida. My first experience was exciting. I had never seen so many people gather for an event like this. As sad as it is to have Parkinson's, the walk seemed to be like a celebration. I think I felt that way because it felt like all of us in attendance were trying to do our part to help get rid of this horrific disease. The Unity Walk was also my first experiences of hearing Joan Samuelson speak. She was energetic, dynamic and so articulate. She talked about her fight against the disease and some of her experiences. She talked about the future. Joan was speaking to thousands but I felt like she was talking just to me. When she described what it was like having Parkinson's. Disease she captured how I felt too. I thought wow this woman is awesome and she has done so much. She was so positive and inspiring.
Bren: I should say she was inspiring! Because of her inspiration and the impact of the walk in general, Nan and I decided where we needed to be that next Tuesday ... and it wasn't back at our desks at work!
Michael and Joan were to testify at as Senate subcommittee hearing, pleading our case for more funding for Parkinson's. Nan and I looked at one another and knew that was where we needed to be. We were walking the walk when we called our husbands from a cell phone, told them what we were going to do. Asking them to support our decision, not necessarily asking their permission! Then we called our respective bosses, rented a car and off we went to Washington, DC. It was really late when we got there because of a flat tire on the New Jersey turnpike. The friend Nan mentioned from Florida, Susan Miller, went along with us. After hours of being misplaced on the one-way streets in the DC area, we finally asked a policeman to direct us to the address where we were to be that next morning. After finding it, we had to find a place to stay. So hours later, we were in a hotel room in Virginia, tired, sweaty (not from heat as much as exasperation and exhilaration) and nervous about being at the hearing in what was then just a few hours away. To make a long story short, because of that experience we can say "we were there when Michael J. Fox entered the fight with his emotional plea and classic statement of 'But with your help, if we all do everything we can to eradicate this disease, in my fifties I'll be dancing at my children's weddings.'"
Nan: Not only was it our first unity walk it was our first time meeting Michael J Fox. A bunch of us got to know him over the Internet. When he found out we were coming to NYC, he invited us to attend a taping of Spin City. Brenda, Paula Wittekind (www.grassrootsconnection.com) and I traveled to NYC from Rochester, Tennessee and Florida. As you can imagine we kept pinching ourselves not believing that this really was happening. We were treated like royalty by his staff and got a tour of the set. We then sat down to watch the show. Our seats were roped off with red rope and the taping began. Halfway through his show he would take the time to talk to the audience. During this portion he put down the microphone and walked over to us. He didn't know who was who but we finally met and got the best hugs. After the show we went to his dressing room and just talked. On the Saturday before the walk Michael came to our hotel to meet the rest of our internet friends that were attending the Unity Walk. None of us will ever forget that weekend in NYC.
How did you and the team members get the word out about the Walk and raising money for Parkinson's disease?
Nan: We asked people to join via the Internet. We talked about in the chat rooms and posted messages on the forums. We also used word of mouth to our families and friends.
Nan: Our first Unity Walk was also our first time meeting Robin Elliott and Sharon Stone from PDF. I don't remember exactly how it happened but he wanted to interview us for a video. How exciting was that!! I think it was because our story seemed somewhat special. There were nearly 20 of us who met on the Internet, became friends and decided to go to meet at the Unity Walk. We were positioned on a rock which kind of became a trademark when later we get asked, gee aren't you one of those people on the rock!
Bren: That weekend, unbeknownst to us, was probably the beginning of our becoming involved with THE Parkinson's community. People at the walk were asking, "who is that group of people carrying the sign, 'we are family?'" Or, "who is this group who met on the internet?" Followed by, "did you hear that only two of them had met in person before this weekend?" Portions of that interview "on the rock" are still being used today.
PLWP with May May Ali at 2005 Unity Walk.