A MESSAGE FROM BRENDA AND NAN

There are exciting things going on at PLWP!  We are going to use this column to keep everyone up to date with what’s happening, as we know it. First, we want to thank all who contribute their time and talent to the PLWP family and joining with us, making a difference.  We are growing in numbers, strength, fortitude, respect and credibility.  We’re becoming a stronger voice of the grass roots of the Parkinson’s community.

In no particular order, here’s “what’s happening!”

A new and improved website will be launched in the next couple of weeks.  Carol McLeod (Pwnkle) has spent weeks developing a website that is more accommodating to our ever increasing needs, both on an individual level and on the many forthcoming projects.  We are really excited about what is to be known as The PLWP Neighborhood.  Our new home will improve our communication abilities immensely and will have several surprises for you.  We’ll let you know the launch date…perhaps we can have something special for the occasion.

We are privileged to have a new member on the Benevolence Team.  Kathy Hayes, a 20-year veteran of the war against Parkinson’s has volunteered to work with Greg Wasson and Ann (AJ) Campbell  (Team Co- Managers). Greg and AJ are still being put together but they are very excited to have someone with Kathy’s experience in assisting people. She will be a real asset to the team.  Welcome to the family Kathy!

A Research team is going to be together by Patti Hager and Chris Hall. This team will be utilized to accumulate and share information in support of various PLWP team projects and some of the other PLWP teams

We have two golf tournaments coming up in August and September.  Be sure to check the Events Calendar on the front page for specifics.  The tournament in August is being held in Rochester, NY. It is being run by the Abraham clan with the support of many friends from Bausch & Lomb.  The Tournament in September is the Second Annual PLWP golf tournament run by Patti and Ron Hager.   Last year, they raised $5,000 for PLWP.   This was our first golf tournament as well as being our very first fundraiser of any kind. 

Our first fundraiser involving the entire membership will end as this issue of Virtuality is being distributed.  The fundraising team has done a fantastic job of managing this event.  We will cover it in depth in the next issue.

Medtronics is interested in PLWP.  A local consultant with Medtronics contacted PLWP after hearing a Rochester radio broadcast promoting the upcoming PLWP golf tournament in August.  They like what PLWP is doing and want to be a part in some way.  We’re having some beneficial communications related to quality of life issues. We will keep you posted as to what is going on. In case you don’t know who Medtronic’s is, the maker of the stimulator device used in DBS surgeries.

Conversation is going on with a couple of prominent pharmaceutical companies with hopes of getting them involved.  At this point we will keep the companies confidential but we will let you know as soon as we know.

 There are more events going on and they are promoted in this issue, i.e. the Unity Walk and the promotion of the CD “Many Voices, One Dream”. 

If at all possible come to the Unity Walk and help us promote the CD.  We promise you a special memory. We’ll leave you with the following that was shared with us by a fellow PLWP.  It speaks to one and all.

A well-known speaker started off his seminar by holding up a $20 bill.  In the room of 200, he asked, who would like this $20 bill? Hands started going up.  He said, I, am to give this to one of you, but first, let me do this.  He proceeded to crumple the bill up. He then asked, who still wants it?  Still the hands were up in the air.  Well, he replied, what if I do this? He dropped it on the ground, and started to grind it into the floor with his shoe. He picked it up, now crumpled and dirty.  Now, who still wants it?   Still hands went into the air.  My friends, you all have learned a very valuable lesson. No matter what I did to the money, you still wanted it, because, it did not decrease in value. It was still worth 20 dollars.  Many times in our lives, we are dropped, crumpled and ground into the dirt by the decisions we make and the circumstances that come our way.  We feel that we are worthless, but, no matter what has happened or what will happen, you will never lose your value, dirty or clean, crumpled or finely creased, you are still priceless to those who love you.  The worth of our lives come not in what we do, or whom we know, but by whom we are.  You are special, don't ever forget it!  You will never know the lives it touches, the hurting hearts it speaks to, or the hope that it can bring.  Always count your blessings, not your problems.

Together we can make a difference,

 

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Patients as Providers

The Concept

By Brenda and Nan

It occurred to us that we have never really explained where this concept was born, what it is now and what it is going to be as it grows. It’s a concept that once again started with John Lester.  It’s amazing how this one man touches so many lives. 

In December of last year, we spoke at the eHealthcare World Conference in New York City at the request of Harvard Medical School.  The essence of the conference was how the Internet affects healthcare in general.  At John Lester’s suggestion, we were invited to share our story of PLWP.  The title of our presentation was suggested to us by the staff of eHealthcare and guess what that title was…Patient as Provider, the Evolution of Healthcare.  We loved the topic.  The funny thing was, they changed the title…we kept it! 

Then in March, we were in Chillicothe, IL talking with Joan Snyder’s Dream Team about their upcoming “Links for Parkinson’s” Golf Tournament.  While there, Joan wanted us to meet two research scientists that she had gotten to know.  Well, to make a long story short, we met with Dr. Phil Jobe for what was supposed to be a 30-minute conversation.  Three hours had passed before we realized it. We had told Dr Jobe about our presentation at the e-world Healthcare conference and he was excitedly telling his feelings about the need for more research dollars and his ideas on how to pursue that. He was speaking to three women who hung on every word.  We were all “fired up”.  So the first PLWP Patient as Provider Symposium was born... a type of roundtable exchange of information between doctors, researchers, neurologists, people with Parkinson’s and their families.  We intend to have many more of these sessions.

The symposium is only part of the concept.  The reality is because of the internet, the patient is no longer in the dark…they have at hand virtually the same information as do the physicians or as we term them Providers.  We are on the cutting edge of a new era of healthcare and PLWP will take advantage of this gift.

At Harvard Medical School’s request, once again we have been invited to speak at the Pri-Med Conference in Boston September 14^th to three to four thousand medical professionals. And, as before, we will have the honor of sharing the stage with John Lester.  This concept of the evolution of healthcare is one that John has nurtured for some time now.

Where are we going with this concept?  Where ever we must go to make a difference and we feel very pleased and proud to be part of it.   

 Nan and Bren