Devi Blye

Member for

3 years 10 months

I have always been very active. As a child, my parents threw me into dance classes. I took tap, ballet, jazz and acrobatics. I quickly made new friends there and loved dancing! The culmination of all my years of training came when my little dance troupe was picked out of all the dance troupes in Los Angeles County to perform in the Thalians Ball.

My dance instructors, Pat and Evelyn, always said “The show must go on.” The biggest life lessons they taught me have been to work harder than you think you can to attain stellar heights, and to never give up. Little did I know way back then that they were preparing me to fight with everything I have when faced with adversity.

Devi BlyeIn 2015, at age 55, I experienced my first Parkinson’s symptom. One evening after using tweezers, my right index finger started to twitch. I thought it was weird, but brushed it off. Over the course of the next few weeks, the twitching became more pronounced. One day I hurt my lower back while pulling weeds. I woke up the next morning unable to lift my head off the pillow. A doctor and X-rays confirmed my lower back was severely strained. I attended physical therapy for two months, which led to my full recovery.

A few months later, I started noticing weird things happening with my body. One morning, I went to put on deodorant. As I started to reach across my body from right to left, my arm stiffened and its movement was very choppy. I figured that the stiffness and weird movement were from my back injury. I also noticed I was feeling unusually tired during my gym workouts. Each time I would leave the gym, I felt like my blood sugar was dropping.

Fast forward, all my symptoms went away and I felt amazing. In the middle of an awesome Pilates Reformer class, our instructor asked us to move into an exercise. As I positioned myself, my body literally froze and I couldn’t move. During the next segment, I looked in the mirror to check my form, and I noticed my right arm wasn’t as high as my left arm. I tried a few times to center my arm, but it wouldn’t move.

Even though I was having physical issues, I continued to take Pilates. One month later, I had no appetite, my right arm was tremoring, and I could barely keep my eyes open. I made an appointment to see my neurologist. I tried to convince him my symptoms were a result of unnecessary stress. He wasn’t so sure and ordered a CT scan. My brain scan was clear, and all the symptoms he had seen during the prior appointment were gone! He made me promise to come back if the symptoms flared again.

It was now one year after experiencing my first Parkinson’s symptom, and not only had they returned, but they were worse. At this point, the doctor was pretty convinced it was Parkinson’s. Hearing those words did not sit well with me, and my wrath unleashed. My first words to hearing “It might be Parkinson’s” were:

“Do you know who I am?” I am an athlete and dancer.

“I would know if it was PD.”

“It doesn’t run in my family.”

“How dare you say I have this awful disease?”

“You don’t know me at all.”

Completely in disbelief, I went to see a specialist at UCLA. She felt the diagnosis was correct. Now my symptoms were totally out of control. So much so, that I was beginning to make unsafe decisions.

While driving one day, the road started to swell up and down before my eyes, and I couldn’t differentiate between the lanes. I called a close friend in a panic. She pulled out her maps app and instructed me where to get off the freeway safely. I ended up at a Motel 6 for the night. The next day, I tried driving again. I once again called my friend for help. Realizing that I clearly was in distress, she drove down to take me home.

After this incident, I knew I needed a definitive answer, so I had a DatScan. A DatScan measures the amount of dopamine in one’s brain. A normal healthy brain has 100% dopamine on both sides. When you have Parkinson’s, one side has less dopamine than the other side of your brain, thus causing all kinds of havoc.

Two weeks later, the DatScan results were in! I was very anxious. I convinced myself that whatever was happening in my body was anything else, not Parkinson’s. My doctor began by telling me that the left side of my brain was lacking dopamine. He spoke those three simple words that nobody ever wants to hear: “You have Parkinson’s.”

At this point, I just put my head down and cried. My first feeling besides complete shock was that my life was over. My next thought was “how do I tell my family and friends this news?” I felt embarrassed and mortified at the same time.

Since that fateful day, almost five years ago, it has been a long and sometimes difficult journey for me, physically, emotionally and spiritually. My goal here is to help those of you who are newly diagnosed or who need support and motivation to stay positive and healthy. I assure you that there is life after Parkinson’s, but the key is to get healthy and stay strong.

If you have recently been diagnosed with Parkinson’s disease, visit Parkinson.org/NewlyDiagnosed to learn more and find resources.

X
 

Sign Up for Our E-Newsletter

Get the latest news about PD research, resources and community initiatives – straight to your inbox.

Please enter a valid email

Skip step



Invalid year format. Eg: 2020
Skip step
Skip step


*Please note that not all content is available in both languages. If you are interested in receiving Spanish communications, we recommend selecting “both" to stay best informed on the Foundation's work and the latest in PD news.

Skip step

Thanks for Signing Up

We are proud to have you as a part of our community. To ensure you receive the latest Parkinson’s news, research updates and more, please check your email for a message from us. If you do not see our email, it may be in your spam folder. Just mark as “not spam” and you should receive our emails as expected.

mail icon

Subscribe here to get the latest news on treatments, research and other updates.