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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.

Never Give Up

Terri Reinhart

A year ago in April, a couple of things happened which would change my life; nothing monumental, but significant, nonetheless:

I became foster mom to a litter of 5-day-old puppies - and - I met Uncle Donut. Okay, I met a lot of other people, too; but who wouldn't be excited about meeting someone named Uncle Donut?

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In this last year, we have raised a total of 9 orphaned pups from when they were brought to the Municipal Shelter to adoption age. Our grandson says, "It's not just a one time thing with Grandma, it's an ongoing habit." Yup. Who could say no when asked to save the lives of tiny, cute, adorable puppies?

And in the last year, I've gotten to know more of the "Never Give Up - Parkinson's and Dystonia" family. It has become an extension of my family as well. There is something special about an online group where, if I don't post for awhile, someone is going to check up and see if I'm okay. There is something special about an online group when they plan a meet-up in Denver and over 100 people show up from all over the country. 

The group was founded by Erika Snider-Jimison after she had been in another, larger group, and she wanted something more personal. Now, she and 7 others (including Uncle Donut - Keith McCoy) are administrators for a group with over 1700 members. Not everyone is very active in the discussions, but that doesn't matter. Some people are more comfortable just reading what the others write. The important thing is everyone is welcome; you can ask whatever questions you want; you can vent, be silly, post video blogs, or eat donuts. 

I'll let some members speak for themselves:

From Erika - "Seeing the love and support this group has for one another online and in person is a testament to why support groups are so important. Starting this group has been my most rewarding achievement to date. When I think of NGU I smile."

From Terry W - "Some say I inspire them to do better of themselves. I say each one of you are an inspiration to me. To see the different ways that a person can deal with all the negative issues of these afflictions and still be a light to all around them. My hat is off to all of you.. You are the blessing that has renewed my heart and brings a smile to my face every day."

From Keith - "Parkinson's Disease is not an "old persons disease", it affects all ages, genders, races, etc.... There is no cure and it's a terrible disease to have, especially if Dystonia sets in. These diseases are painful and I don't wish them on anyone. I have both plus fibromyalgia, edema, osteoporosis, etc.. We struggle every day to do what used to be easy tasks, like brushing our teeth, eating, getting dressed and more. It's a degenerative disease that cripples you. It not only affects you emotionally and physically, but it affects those you love. Don't feel sorry for me, but laugh with me. I'm known as Uncle Donut in my support group and they're amazing people We need a cure."

Keith asked, "What stuck with you from the Meet and Greet?" Some of the answers are below:

  • The true warmth and genuineness of everyone! From the greetings to the hugs, to the offers of help! It was humbling!
  • It would be how comfortable it all felt.
  • How I wasn't self conscience about how I walk or movements I make, because, everyone understands.
  • I still try to hide it, especially at work. It's so exhausting.This weekend I was able to just let the tremor do its thing.
  • How real and genuine everyone is. The warmth of the hugs. The feeling of having known each other for so long. The generosity. The willingness to help each other without blinking an eye. The strength, courage and laughter through struggles.
  • The thing that stuck with me the most was "no fear". Through storms, dystonia, nOH, for the first time (in public) there was no fear from those around me. I had no fear of people not understanding. It was a wonderful feeling! I cannot thank you all enough for giving that to me!!
  • Beauty. Erica's video celebrates the beauty of NGU members. You have to see them in person to appreciate it. Gorgeous. I felt attractive myself in their company. (my note - when the people around you can see the beauty in every person, it's easy to see and feel the beauty in yourself)
  • The comfortable feeling to be around folk that understand! No explanations - NO hiding symptoms - HUGS instead of DRUGS!! And no one expects or suspects anything...WE CAN JUST BE!!
  • By only being there virtually through all the wonderful posts, it is family. A sense that we are not alone, and among others that understand the daily struggles and accomplishments. I will be there next year!

Look at this photo - these are the faces of people with Parkinson's and Dystonia. Yes, there are some family members in the picture, too, but our youngest group member is 3-years-old and has Dopamine Responsive Dystonia. Okay, her parents are active in the group for her. We have other children with DRD. We also have young people in their teens and twenties with juvenile onset Parkinson's disease. The oldest member of the group is 82. I'm almost 60 and in many PD groups, I have been the youngest. Not so in this group and it's not just because I've gotten older! 

The Meet and Greet included a catered lunch, T-shirts, and two keynote presentations. The first was given by Jasmine Sturr, who has juvenile onset Parkinson's disease. She spoke about the non-motor challenges with Parkinson's, making a good argument for not describing Parkinson's as a movement disorder, redefining our language to describe PD as a "Systemic Neurological Disorder". Her entire talk is on her You tube channel.

The other speaker was Navin Kumar. Navin has Parkinson's disease and he also has a partially mechanical heart because of a congenital heart defect. He has had 5 open heart surgeries. He is also a champion table tennis player and is, right now, in Germany to represent the US in the Paralympics in table tennis.  

Online, the group is growing every day. This will be a challenge for our administrators and all of us. Can we keep the personal, community feel with over 1700 members? For those who cannot come to the Meet and Greet, how can we include them during this special time? As the numbers grow for the Meet and Greet, how do we reach out to all the new folks and not just hang out with those we know and are comfortable with? Can we have some fundraising to help members who would like to come, but can't afford the trip? Or use some of us who are in town to provide host homes?

Teri, Terri, Terry, and... Teri! 

Teri, Terri, Terry, and... Teri! 

I believe this group can do it. We have amazing leaders who really believe in this community. In Denver, Keith Uncle Donut McKoy made sure to greet every person in attendance and he had his picture taken with each one of us. This year, we added a picnic after the Parkinson's Vitality Walk, just to give everyone more time to get to know each other. 

Nearly everyone came. We even brought the puppies.