How do I talk about something nobody wants to talk about? When you are diagnosed with a disease like Parkinson’s and live in a small community, of course people link you together with others with the same disease. Oh, you have Parkinson’s, do you know such and such? She/he has Parkinson’s too! As if we all should know each other and are in some kind of secret club, in which we actually are. I remember the first people I talked to after I received my diagnosis were; Phil Hebert and Jenny Gatehouse. I knew Phil and his brother Andrew from the local club Hockey team the Sun Valley Suns and from the city men’s softball league. I was living in Seattle trading emails with Jenny and Phil, after being diagnosed, and he was answering the questions for me that you just can’t think about until your life changes in every possible direction. What medications do I take or don’t take? Do I wait to save the gold standard Carbidopa Levadopa for later on in the disease? Do I start it immediately? What doctors should I go too? What questions do I ask? Should I eat different? What’s happening to me? What is going to happen to me? I don’t understand this disease that nobody else seems to understand either. Jenny had already gone through cancer and beat it! She could beat this also, right?
I was working in the Federal Aviation Administration Regional Offices in Renton, Washington as the Required Navigational Performance coordinator for the NEXTGEN system and redesign of the national airspace system for the Performance Based Navigation Office in D.C. My job was to go where they sent me, usually to larger cities to design instrument approach procedures for the airport. I had begun at a time when no-body actually knew what I did because the program was so new we actually made up the job and criteria as we went.
I had received approval after my diagnosis of Parkinson’s to move back to our Idaho home so we we would be closer to friends and our support system. Jenny had also returned to the valley and I’d begun to online chat with her about some things that were working for me and later saw her for a day in the park. I remember vividly as I watched from a picnic table several hundred feet away as her fragile body exited the vehicle. With the help of her caregiver, she had began the slow shuffle to a wheelchair then to my location. It was hard to watch, is this my reality and destiny? As Jenny approached she struggled terribly and I saw something in her eyes as she smiled at me, that I’ll keep for myself instead of trying to explain through text. Simply, someone without this disease, I don’t believe, could ever pick the words to describe. We visited for a while then went on with our day.
Jenny later would reach out further to me for help, which I was not qualified to give, and it really shook me up and set me back. She finally lost her fight last year and is no longer in this world or in pain, for which I am very thankful for her. I am sorry I couldn’t help more and I never got to say goodbye. I’m going to remember her smile not her struggle, Rest in Peace Jenny G.
Recently, I have gone through a very toxic marriage and divorce and there are things that will never make sense to me, that I will always try not to remember but think I can never forget; I can only forgive. Hopefully, I’m on my true path of recovery. These past couple years have been terribly difficult as I have needed to adapt and change in so many different ways and activities as my new life begins. One thing that will never change is my love for my 3 beautiful children. This past couple weeks I took 2 full steps forward instead of shuffling with 1 step back and created a new outdoor/entertainment area in hopes of sharing laughter, smiles and joy with friends and family in a relaxing space. If you’re in the neighborhood stop over for a cup of coffee, glass of water, bottle of beer or glass of wine later over a flickering flame. I can’t tell you that things are or will ever be easy for me, but I will tell you I’ll never give up, and I always enjoy good company and friendship! Thank you to all that send me little snippets. By telling me that what I write online helps with your own personal struggles, it helps me with mine…. It’s nice to have any support! I enjoy the friendships both in real life and online, knowing I’m never alone and there is beauty in all things, except for in evil.
Today I chatted with a girl that is a wonderful artist who has Dystonia. She showed me her drawings that she does to help her cope. My daughter loves fairies and I think I’ll show her some of my new friend’s pictures.
Fight Parkinson’s it’s what I do!