The first PLWP Spring Rally ....

This was a marvelous time of emotional bonding and theraputic getting thihngs done and also a great time to network. We stuck to the schedule as close as lots of people can stick to any time frame....needless to say, a good time was had by all!! Below is the schedule and following that are the remarks that i made.

PLWP Spring Rally Schedule

People Living With Parkinson’s

Friday, March 30....
We will greet you upon your arrival in the lobby of General Butler Lodge from Noon thru the afternoon with ((HUGS)) and give you the information packet. Relax in the public room in the lobby with a wall of windows to view the beautiful park scenery while visiting with new and old PLWP friends. There's also a restaurant and a gift shop. Your room is guaranteed to be ready at 4PM, possibly sooner.

6:00..Dinner Time. After dinner, enjoy “getting to know you" activities.

Saturday, March 31...
7:30-8:00 Pitch and Putt 9 hole golf course designed by Ryan.
8:00- 8:30 Mischef’s Meditation
8:30- 9:00 Toads' Taking Time...
9:00-10:00 Breakfast
10:00-11:30 PLWP Conference - PLWP “What’ Going On”
Nan & Bren
Baby Jack
Team Leaders
11:30 -12:00 On Your Own
12:00-1:30 Lunch
1:30-1:45 Introduction of Dr Schneider
1:45-2:45 GUEST SPEAKER - Dr. Jay Schneider of Thomas Jefferson University Hospital,
Philadelphia, PA and Professor of Pathology at TJU. Dr. Schneider is presently directing the
GM-1 study.
3:00 - 6:00 Travels With Parkinson’s - Leonard “Chy” Cassavant
Question & Answers with Dr Jay Schneider
Interviews with PLWP Attendees
6:00 - 7:00 Dinner
6:00-8:00 On Your own or check the Activities List.
8:00- ?? Happy Birthday PLWP- Party in the Kentucky Room
A few words from the Board: John Lester and Joan Snyder

Sunday, April 1...
8:00 - 9:00 Breakfast
9:00- 9:30 Peg's Prayertime
9:30- 10:00 PLWP Goodbye for now

My speech:

Hello…it's good to see you again!

I love you!

What do you really think about……….?

How are things goin' with you?

These are phrases we certainly hear a lot if we're online-especially when we're in chat or on a listserv or a forum

By now, I know that you are figuring out where this talk is going-I'm going to talk about the power of love, sex and lies on the internet. First of all- we can, in most cases, easily tell by listening to the subtle nuances of the speakers voice-by their tone, their inflections, their body language, the look in their eyes, the "vibes" they send out. DO NOT GET ME WRONG….I've been ripped off, wiped out, I've been burned-both on and off the internet. The point that I'm making is this: It's a whole lot easier to tell when you are in the same room-face-to-face with a person-than it is when writing an idea in a min

"Words are a heavy thing…they weigh you down. If birds talked they couldn't fly." Marilyn Whirlwind

"They say that blood is thicker than water. Maybe that's why we battle our own with more energy and gusto than we would ever expend on strangers." Chris Stevens

Actually, there used to be an entire code of etiquette when the written word was the 2nd most common way of
communicating. But, we have grown up several generations away from that; we are used to more instant means of gratification of our need to express ourselves. In these days of instant communication, we are used to calling people on the phone, video conferencing, faxes and all the sophisticated ways of getting our point across. It seems that we have, however, forgotten the basic rules and common courtesies that should govern our written word. To this mix add age differences, cultural differences, mores and taboos over what is acceptable and what isn't, religious preferences and political correctness and it's a wonder we communicate at all! All this and more too!

When we are plwp's, our mood swings, our sleep deprivation, and all the other factors that make our life more challenging can all add up to make it seem as if we're one giant Tower of Babel But we preserver and despite all of these seemingly overwhelming problems, we connect and we make contact-maybe with just a few or maybe with many-but there's that spark of understanding and unity that cannot be denied. This spark is a generous and a precious gift-the power of words is awesome: to impart love, caring, concern; to hurt, to heal, to confuse, to cause anger and to mislead. It seems to me that in this place where words are so important….that we must use this gift of vocabulary very tenderly.

We all have different "spins" that we can put on others words and sometimes I wonder if we are not too quick to take offence or to make judgment calls. I understand how easy it is to look at things from your own perspective-after all that's what we are most familiar with: this database includes our own feelings & reactions to intensely personal ideas and experiences. It is after all, the essence of ourselves and we cannot ever completely walk away from that person that we are and become completely objective…nor should we.

We each bring to this virtual dinner table, all of our hopes, dreams and our souls-the very essence of who we are. And we expect everyone else to do the same….but in the cyber world, is this always the way it happens? I have always been one to wear my heart on my sleeve-anything you want to know about me-just ask. I tell people just what I think and how I feel and I love unconditionally.

I have been blessed by meeting some of the grandest "fellow travelers on this spaceship earth" but I have also been burned- one time so badly that it caused my symptoms to progress 2 yrs worth in just 6 months time. I cannot recall ever being so beaten up mentally & emotionally (and I thought my heart was made outta scar tissue). Just as easily as we become fast & furious friends online, we can also be taken in. But we cannot allow these possibilities to influence our activities online.

We must preserver and not become overly sensitive or internalize these feelings. We must keep our faith, our sense of humor, our honesty and our good will. We will survive and become efficient and effective as we pioneer this brave new world of "cyber-community," brotherhood and family. You might be wondering about where the sex part of my speech is…  Sorry-I just put that in to grab your interest!!