When I was young, all I wanted to be was an astronaut. At the age of seven, I went to the beach in Florida and was severely sunburned so bad that I had to stay home for several days while my skin blistered and peeled. It was during that time I discovered the TI-99/4A computer my parents bought (but had no games). I found the user manual and a chapter focused on “dancing bojangles” which was an animated block of blinking squares you could, with a real stretch of the imagination, assume was someone dancing.
My passion for computers won over and I started a career in IT. I eventually landed at the company I never imagined I’d make it at: Microsoft. As a college dropout, I just assumed they wouldn’t be interested. Not only did they hire me, but they helped me relocate from Georgia to the state of Washington where my wife of 25 years, Doreen, and I loved to stay.
I traveled the world in my new role, making “diamond” status on one airline in just a few months as I flew from London to Amsterdam, then to St. Petersburg, Russia, back to Warsaw, Poland, over to Johannesburg, South Africa and finally headed back to my bride. Something strange was happening on these trips. I was getting extremely homesick and depressed and having difficult falling asleep. I also noticed my left arm would sometimes shake when resting (I’m left-handed).
The naturalist gave me stretches to do. The neurologist electrified needles and stuck them in my skin then informed me he had no clue. The carpal tunnel specialist noted mild carpal tunnel but nothing that would cause tremors. The neck surgeon had me do a brain MRI which revealed an abundance of “white matter.”
After one doctor said, “I can’t tell you that you don’t have Parkinson’s, but I’m not positive if you do” we decided to find a movement disorder specialist. I received the news from Microsoft: I was accepted into my new role as a product manager that would require me to commute to campus every day. That was followed by the announcement that I should take my car and go home because the campus was being shutdown due to the pandemic. Add on top of that my clear, unambiguous diagnosis of PD by the movement disorder specialist and you can imagine how fun that week was.
I began advocating immediately. I joined Team Fox and my friends and family generously contributed thousands of dollars. I started a blog to chronicle my journey and called it Strength in Weakness even though the website is on “Strength with Parkinson’s”. I testified about my condition to members of congress to help them understand why bills like the National Act to end Parkinson’s Disease are so important.
My wife suggested we start a podcast so we could share our experience with the world, and we recorded season one of “You, me, and PD.”
I prayed to have more impact, and a week later received a call inviting me to join the board of directors for the Young Onset Parkinson’s Network. I said, “YEAH” and dove in. At work, I joined our disability employee resource group and then was brought onto the leadership team for the group when I volunteered to own the content for our monthly newsletter.
The astronaut hidden inside of me finally came out and I picked up a new hobby: astrophotography.
I’m now about to reach my four-year milestone after diagnosis. I was a strict vegan for almost a decade and remain mostly plant-based. I am still dairy free but eat eggs and coldwater fish. I workout at a CrossFit garage and also hike. My wife and I moved to a small town on the Oregon coast to reduce the stress in our lives and are working on building a custom home designed to be accessible for her despite limitations from major back surgery and easy for me to navigate for new clothes.
A friend of mine was describing a disease his son had as an “unwelcome guest” that won’t leave. I wake up with Parkinson’s in my joints, pass through the day with it swirling through my head and eat meals with it hovering over my shoulder. I find fun ways to challenge PD, whether it’s doing thousands of burpees, defying my symptoms by shooting an awesome round of 9-ball, or producing a rap video to let PD know it’s NOT WELCOME HERE.
I’m optimistic for the future. Despite all of the negative things that can be associated with PD, it has been a positive force in my life and connected me with amazing people while teaching me humbling lessons about how even with PD I’m in a blessed life compared to what many must go through.
The most powerful force in my PD journey has simply been connections. The friends I made through my local support group in Seattle. The friends I made through my time on the board of directors for the YOPN Network. The friends I made at the conference we created last year. I’ve known of this chat and read some threads over the past but haven’t been as involved as I’d like to be. So, I’m here to make connections, learn from your experience and share mine however it may be of help.
My name is Jeremy Likness, and I have dopamine issues. Pleased to meet you!