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The Meetings and Leavings with Online Parkinsons Friends

Posted Oct 20 2008 12:01pm

I don’t know if everyone has this feeling like I do, but there is something mysterious about chatting with someone online and getting to know them and not having met them face-to-face. And I usually develop a strong desire to meet these people..the ones I’ve shared with online and who share my struggles and victories of Parkinson’s disease.

So today I want to share with you about some of my first meetings with people I had met online who have Parkinson’s disease. And I would also like to share with you a very touching description of a meeting of online friends from my friend, Peggy, in her journal. (used with permission). In looking back on my meetings with others, her observation of how it feels is so very appropriate.

My first online meeting with not only one person but several came about a year after I had started chatting with some people with parkinsons (or PWPs) in the chat that PLWP had. This was most interesting as it included voice as well as typed chat. I often visited the chat and was a shy participant for a good while. But several people pulled me into the conversation and I was hooked. One of these people was planning an awareness walk and I was excited to go. Things worked out and my mom, my daughter, my sister, and a good friend traveled with me to Savannah GA for the first Parkinson’s in the Park event. I figured if I was going to meet a whole gang of people I might as well take a gang with me (plus I knew my hubby would never let me go by myself and he had no desire to meet all these ‘people’ with whom I had gotten so friendly with online).

I don’t remember the first person who I encountered face-to-face at the Parkinson’s in the Park weekend, but I had a great weekend meeting about 20 friends from all over the USA and Canada with whom I had chatted with online. I still keep up with several of those people even now, 3 years later.

The first time I traveled by myself to meet an online friend was in Sept of 2005 when I flew to NJ to meet and stay 3 days with my friend Annie. We had conversed about a year before then and it was an amazing adventure to meet her and her family and see another part of the country. There I was, 43 years old and seeing the statue of Liberty for the first time! I will admit I was too chicken to take Annie’s offer of giving me a guided tour of NY City that time (but in 7 more months I was in the city for the Unity Walk, with my NJ pal Annie). We laughed and cried and took in every minute of our time together (and slept very little) and we are friends for life. Now the only bad part about these meetings is the parting….it is hard. But I know now to look at each parting, as not an ending, but a continuation of a journey.

I can really relate to a meeting described by my friend, Peggy, in her journal dated 6/03/00:

” …it cannot be denied that the events of the past few days are far too coincidental to not have been part of my “predetermined” plan. Our plan is revealed by the many opportunities afforded us in life. I call them those “open windows.” If I go through one of those open windows and it’s part of my predetermined plan, things really start clicking. Today, it became evident that I was headed down the right road.

I had talked with Bren on several occasions through my journaling efforts with PLWP. Joan was also a journaler, and I was keeping up with her story online. Bren and I discovered that we were living only a 2-hour drive apart from each other. Joan and family were going to be passing through, and Bren invited me to join her in the meeting of these fellow PLWP’s. That’s when things started clicking. I arrived at several hours before Joan, which gave Bren and I the chance to get to know each other. We sat in the sunshine of her beautiful back yard enjoying the picturesque view and chatting away as if we were high school buddies. We laughed, and we cried.

The highlight of the day, however, came when Bren connected with her PLWP friend. “She’s here!” yelled Bren as I washed up from cutting onions and tomatoes for our cookout. My heart thumped into my throat. I sprinted (as well as one can sprint with a cane!) to the front porch to see hugs and handshakes being exchanged. Then I heard Joan’s sweet voice ask, “Where’s Peg?” Our eyes connected and we meshed into our outstretched welcomes. I think we must have stood in that driveway hugging for at least 30 seconds – a long time for total strangers. But people with Parkinson’s can never be “total strangers.” You could feel the energy in that hug flowing into a common bond that would last a lifetime.

We ate grilled hamburgers, talked about our journey with Parkinson’s, and dreamed about our futures. At one point we were all sitting on the sofa in Bren’s looking at Joan’s scrapbook and all that she has accomplished with PD awareness. I stepped back and became a spectator, watching three women who should be out playing tennis, taking long hiking trips, or be running endlessly in wide-open fields catching butterflies. Instead, they sit together on this sofa, in this way-to-early point in their lives trying to determine when their next dose of medicine is due and how they will feel tomorrow because they’re overdoing it today. I do believe in friendships made in heaven . . . and I do believe in predetermined windows of opportunity being offered. I’m so glaad that Bren, Peggy, and Joan stepped through this window.”

I have had the wonderful opportunity to meet many other people with Parkinson’s in person at conferences, the Unity Walk, or at a meeting arranged on a stop along a trip. I would try to name them all but I’m afraid I would miss someone. But friends Annie, Becci, Kaylee have been to my home. Quiltermom, Lorrie, and ParkieJan, and Carol M. have travelled to our local Parkinson’s gathering at Steele Creek Park, and we have had such great times and memories together here.

Just this year I have gotten to meet some of my online friends from PatientsLikeMe at the Unity Walk and the Young Onset Parkinson’s Network conference. Imagine meeting Pokie twice within six months–am I lucky or what? She inspires people wherever she goes! And it was especially nice to watch my friend Kari, newly diagnosed, take in everything at her first PD conference.

Meeting other people with Parkinson’s changes me…it gives me a smile that lasts long after we depart…it affirms my feelings of “yeah, this person is special”, and it makes memories I will always treasure. I am eagerly awaiting the opportunity to meet some other very special ladies with Parkinson’s, Sass, my blog partner, Sherri, and Regina. Sass and her husband will be vacationing within 100 miles of my home in a couple of weeks and we are planning to see one another then. Sherri and I were supposed to have met in August in Atlanta but things happened, but now things are hopefully happening such that she will travel to see me in the near future. (see i’m putting it into writing to hold her to it!!! lol). And Regina and her family will be traveling through this way after the Christmas holiday and we are planning on meeting somewhere, someway, sometime then! And if things work out, I would love to see my California friends, Karen and Marian before the Unity Walk in 2009. So you can see, I’ve got more exciting meetings to anxiously wait for! I’m sure they will be memorable in each a special way. So stay tuned, and you might get to hear about them! And although each meeting has a leaving, I’m learning to appreciate the meeting and not be so concerned about the sadness of leaving. Because I believe like my friend Peggy stated that the ‘common bond’ we make from meeting will carry us through until we meet again.

Judy Hensley

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