It was in my teen’s when I was diagnosed with Juvenile Rheumatoid Arthritis, in my 20’s Colon Cancer and in my 30’s Parkinson’s disease. I was used to having a medical challenged life, but I had no way to anticipate what challenges were ahead of me. Parkinson’s impacts so many facets of your life.
I can remember the day that my fear became a reality. I sat in an uncomfortable flower-print chair in my neurologist's office. The nurses in the front office were talking to each other about what type of sandwiches they would order for lunch. The background was filled with traces of annoying soft-rock music and an overpowering smell of coffee. It was apparent that someone put much effort into creating a calm and relaxing environment, but at the moment it felt as irritating as wearing an itchy sweater in the desert.
A nurse came into the waiting area and called my name. I followed the nurse as she guided me to the exam room. Hearing the diagnosis — "You have Parkinson's disease. There is no cure, and you will struggle with this the rest of your life." — was like being punched in the stomach. I felt cheated out of a life that held so much promise. I looked down at my rigid left arm, resting lifeless on my lap. It felt alien. This was not the same arm that helped me make the cheerleading squad. These were not the fingers that I used to play the flute in my high school band.
After the shock wore off from learning about my neurological decline. I knew I had to stop thinking about “Why me?” but shift my way of viewing my diagnosis to “Try me.” I would use the same method of coping that I had so heavily relied on with past medical challenges. I Focused on being happy, taking it one day at a time and use humor to get me though the difficult times.
I thought about what type of support I saw that was missing in the community, and what I would find useful being a patient myself. Just like many other illnesses, the mental health aspect was completely neglected. It was just not spoken about. No one asked me how I was doing emotionally, and no referrals were offered to seek support. It appeared that I was to just handle any emotional pain that I had on my own. Every medical professional was phenomenal in their area of expertise, but no one was looking at the continuation of care.
I completed my graduate program and became a licensed Marital and Family Therapist in the state of California. Then I got hired by my Neurologist’s office to work with their Parkinson’s patients. I partner with individuals, couples and families who are faced with health challenges and chronic pain. It’s a unique experience to see both perspectives from being a patient and also a clinician. In 2013, I extended my reach into the world of Parkinson’s by launching The Perky Parkie Blog, with my sense of humor, I share stories of life with Parkinson’s disease. It’s a great feeling to know that my blog has led to interactions between my readers and provided a few giggles... I mean, really, you’ve gotta be able to laugh at yourself.
After 11 years of having Parkinson’s disease, I can’t really remember what my life was like without it. All the people who I have met, all the friends I’ve made who have become a part of my Wolfpack, I wouldn’t change it for the world. I’m not saying my life is easy, not even close, but without Parkinson’s, my life wouldn’t have meaning.
It is never too early or late to build your care team to help you manage Parkinson’s disease. Learn more about building your interdisciplinary care team.