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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

A Virtual, but Real Community

Terri Reinhart

Like many people nowadays, I have two distinct groups of friends: those I know in person and those I know only through online communities. Some may debate whether online friendships are as valuable and real as face to face friendships. 

Besides Facebook, which I think of as more of a small town newspaper than a community, I have been involved in several online support groups and have cruised through a number of others. I'm picky. They can have their plus sides and their not so pleasant sides. 

On the plus side - you can participate as much or as little as you want without anyone asking you why you are so quiet. They don't know you're there. The down side - Unless you participate, no one knows you're there.

On the plus side - as you don't generally see these people face to face, it can be easier to say what you really think. The online group allows people some anonymity. The down side - Anonymity can allow some people to feel free to be loudly judgmental or mean.

Never Give Up - Parkinson's and Dystonia - is one of the good ones.

Any community, whether online or in a neighborhood, is only the sum of what everyone contributes. I've been in support groups where arguments break out and people start taking sides and it escalates into something that doesn't feel much like a support group. And I've lived in brick and mortar neighborhoods where the residents are less than neighborly. 

What would happen if you took one of these online groups and brought everyone together so they could meet face to face? 

It happened last weekend. The Parkinson's Vitality walk in Denver was on Sunday and the Never Give Up Parkinson's and Dystonia Facebook group decided they were going to have their first ever meet-up. Not all the group came, but there were over 40 attending, from 30 different states. In person, face to face. There were lots of hugs. Unfortunately, I wasn't able to go to the walk, but I did make the meet-up at Old Chicago Pizza.

I hadn't been in the group long, so I felt more like an observer. And what I observed was a group of people who truly care for each other. 

Never Give Up - Parkinson's and Dystonia - is one of the good ones. It's easy to tell. While the overall feel of the group is incredibly positive, no one is telling us as individuals that we have to BE positive in any one moment. That's huge. The pressure to have to be positive can be incredibly stressful and that's not supportive. To allow people to be where they are at, while at the same time maintaining an overall supportive positive atmostphere, this is an gift to its members. It means we feel we are heard and understood. We can take a breath and, suddenly the world is a more beautiful, positive place to be. 

Meeting some of this group in person, I can honestly say if I'd not known they had only met online, I'd never have guessed. It was obvious to this bystander that these folks have known each other since childhood, have watched all their kids grow up together, and helped each other painting their barns and houses. They hadn't, of course, but that's the only way I can describe the feeling in the room as everyone greeted each other. 

Oh, and I won a donut award. I can't remember what it's for, but it makes me smile because it's named for Keith, aka Uncle Donut, who makes us all smile and laugh with his home videos. Everyone wanted to get their picture taken with him. Being new, I was a little shy about asking him, but they're coming back next year. I'll bribe him with a Krispy Kreme.

A big, big thank you to the founder of this group, Erika Snider-Jimison, and her admins: Denise Klobe, Diane Chabiel, Kristin Snider, Tina Aubuchon, and Keith McCoy.