My name is Devi. As this is my first Blog entry for P4P, it is a longer read than I usually write. I just wanted to be sure to cover all bases of my life up to the point of diagnosis. Comments and questions are always welcomed and encouraged!
I have always been very active from the time I can remember. As a child, my parents threw me into dance classes. I took tap, ballet, jazz and acrobatics (now known as gymnastics). I quickly made new friends there and loved dancing! Pat and Evelyn owned the studio (Arturo and Evelyn). They basically owned us as well, mainly because we spent more time with them then we did our own parents. I attended classes 3 times a week and every Saturday, for years. I took my dance practice very seriously. We traveled all over Los Angeles entertaining the elderly, Veterans and Television/ Movie Stars, living in a local retirement community. It was great fun! The culmination of all my years of training came when my little dance troupe got picked out of all the dance troupes in Los Angeles county to perform in the Thalians Ball. Every year, the Thalians organization picks a famous person to honor for their incredible talent. That year, Gene Kelly was chosen to be honored.
Rehearsals were physically grueling as we danced 4 to 5 hours a day. Saturdays were an all-day event. When we finally performed (in the swanky Ballroom of the Beverly Hilton Hotel), we came through a green screen with Gene Kelly. I got to dance right alongside him. We tapped our little hearts out to “Singing in the Rain”. What an amazing night that was. Not only did I dance with one of my idols, but the star studded audience gave us a standing ovation! All that intense training definitely paid off. Pat and Evelyn always said “The show must go on”. In other words, no excuses. Get out there and shine! Make us proud! I truly learned so much from them. The biggest life lessons they taught me have been to work harder than you think you can to attain stellar heights, and to NEVER EVER give up. Little did I know way back then that they were preparing me to fight with everything I have got, when faced with adversity. They modeled great discipline through tough love. Trust me when I say Evelyn was as tough as nails, but we knew she loved us. Pat on the other hand, was a big marshmallow and oozed love.
I continued to dance at the studio until I was about 15. Boy crazy set in, as my hormones began to fly. So of course I was no longer interested in dancing. I didn’t realize how much I missed it until I graduated high school at age 18. I began to wonder what to take in college, besides the regular boring prerequisites. I noticed that my Jr. college was offering ballet classes, so I quickly jumped on it. Although I was rusty, I felt like I was home again. It really is true what they say about muscle memory. Your muscles never forget. Before long, my body once again became very fluid and strong. After 2 years at Santa Monica Junior College, I ended up transferring to UC Irvine. U.C.I. is known for their spectacular dance program, so I was super excited to get in. While there, my emphasis was on ballet and pointe. Let me just say that toe dancing (pointe) is not for the faint of heart. You literally stand on the tippy tops of your toes, with a little bit of “cotton” to protect your toe nails from splitting open. I graduated with a BA in Dance.
After receiving my diploma, I once again got sidetracked, but never forgot my roots. I joined a gym and became a big fan of indoor cycling classes. I loved spinning so much that I got certified and became an instructor! While teaching at my local gym, I became interested in outdoor riding. I ended up taking part in America’s Most Beautiful Bike Ride in Tahoe (100 miles around the lake) and ultimately trained for the AIDS Ride from San Francisco down to Santa Monica (545 miles). As you have probably gathered by now, physical activity has always been a driving force for me.
In the Spring of 2015 (I was now 55), I had my first symptom. One evening after using tweezers, my right index finger started to twitch for a few seconds. I thought it was weird, but brushed it off. Over the course of the next few weeks, the twitching became more pronounced, but I equated it with too many years of pinching tweezers (Excuse #1). During the last week of April (2015), I severely strained my lower back. I was pulling weeds from my backyard, and wasn’t bending over correctly. I felt an immediate twinge in my back, but ignored it. Instead of stopping and icing my back, I continued to pull weeds. I was fine when I went to bed, but woke up the next morning unable to lift my head off the pillow. My pain level was high. After seeing the Dr. and having X-rays done, it was determined that my lower back was severely strained. I attended Physical Therapy for the next 2 months. P.T. worked like a charm, and I fully recovered. As soon as school finished for the year (I am a teacher), I packed up and headed down south for my summer break. It was now the tail end of June. Within a few days of arriving in Los Angeles, I started noticing very weird things happening with my body. One morning, I got out of the shower and went to put on deodorant. I held the glider in my right hand. As I started to reach across my body from right to left, my arm stiffened up and its movement was very choppy. I tried a few more times and the same thing happened. Excuse #2 came into play. I figured that the stiffness and weird right arm movement were left over from my back injury. After all, it had only been about a week since finishing P.T. I also noticed I was feeling unusually tired during my gym workouts and with my personal trainer. Each time I would leave the gym to head on home, I felt like my blood sugar was dropping. Excuse #3…. I just needed to eat. But unfortunately, food was not helping the weirdness I felt within my body. In mid- August, I was back home and getting ready to begin a new school year. By this point, my symptoms were becoming quite the problem. My balance was off and I was extremely exhausted all the time. I decided to hire a personal trainer for motivation and to help me regain my perfect balance. I worked out with her early mornings. During one of our training sessions, she asked me to step on top of a stair step (with one foot). Once on the step, I was to lift my back leg off of the ground and hold it up for a few seconds. I struggled to even do one correctly and on the second try, I fell backwards and landed on my bottom. It was a serious Ouch!! Thank goodness I only bruised my tailbone (and my ego). Excuse #4..... I had too much fun during my summer break and not enough sleep. This excuse of course, explained why I was off balance and exhausted. I knew I needed to find a workout that would be better suited for me. Someone suggested trying a Pilates Reformer class, and I jumped at the chance. I found a brand new studio down the street from my house. After starting classes, my tailbone healed within two weeks. I equate the quick healing to the reformer and great instructors.
Fast forward to mid- November. All symptoms had gone away and I felt amazing. I had been practicing Pilates for 2 and a half months, so I knew the drill. In the middle of an awesome reformer class, our instructor asked us to put our long box on the reformer and then to lay flat on it. I had trouble putting the box on correctly, as it felt like I was lifting 200 lbs. As I went to straddle the box and then lay on it, my body literally froze and I couldn’t move. After a few tries, I was finally able to get on correctly, but it was too late. Everyone else was disembarking from their long box. During the next segment, we were asked to lift our arms up (sideways to our bodies) and hold them at shoulder height. I looked in the mirror to check my form, and I noticed my right arm wasn’t as high as my left arm. I looked like a teeter totter! I tried a few times to center my arm, but it wouldn’t move. Now I was scared because it felt like my right arm was paralyzed. Even though I was having physical issues, I continued to take Pilates classes through the third week of December. On our last school day before Christmas break, I had a big party with my class to celebrate the holidays. This was always one of my favorite days of the entire school year. Unfortunately, it wasn’t a happy day for me at all. I had no appetite, my right arm was tremoring and I could barely keep my eyes open. After school that day, I made an appointment to see my Neurologist hoping he could shed some light on what was wrong with me. My symptoms put on a good show the day I saw him. Excuse #5… I tried to convince him that because I was under unnecessary stress at school (which was the truth), my body was simply reacting to it. He wasn’t so sure and ordered a CT Scan. I asked him what he thought was going on, and again, he said he wasn’t sure.
Once the Scan was done, I met with my Dr. (January 2016) to go over the results. My brain scan was clear. Yay!! And…. all the symptoms he had seen during the prior appointment were gone! I was happy to announce that I had been right all along. Historically, my body has always reacted poorly to major undue stress. Unfortunately, my symptoms present themselves physically. As an afterthought, he made me promise to come back if the symptoms flared again.
Time went by. It is now the beginning of April, 2016. Not only had my symptoms returned, but they were worse than they had ever been. It got so bad that one morning I had to leave school to go see the Dr. because I suddenly didn’t know where I was, or the kids names. At this point, the Dr. 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”? In other words, I am an athlete/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 during my Summer break. 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. As usual, I spent the entire summer down south with my family. Sadly, it was once again time to say farewell for now. Another school year was upon me and it was time to get ready. I hit the road in early August not feeling well. Within 40 minutes of driving, the road started to swell up and down before my eyes (like the ocean), and I couldn’t differentiate between the lanes. I called a very close and caring friend back home 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 rest of the day and spent the night there. The next day, I tried driving again (but this time really early). It didn’t make a difference because again, I clearly was unable to drive. It got so bad, that I once again called my friend for help. But this time, I was in a major panic. Realizing that I clearly was in distress, she organized for her and a friend to come down south to take me home. After this incident, I knew I needed a definitive answer, so a DatScan was performed. 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 to hear what the Dr. would say. I had imagined this day for quite a while. I convinced myself that whatever was happening in my body was anything else, not Parkinson’s. My Dr. began by telling me that the left side of my brain was lacking Dopamine. Left side Dopamine deficiency equals right side body symptoms. He spoke those 3 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 very embarrassed and mortified at the same time.
Since that fateful day, almost 5 years ago, it has been a very long and sometimes extremely difficult journey for me, physically, emotionally and spiritually. My goal here is to help those of you who are newly diagnosed and/ or who need support and motivation to stay positive and healthy. I will be blogging daily in the very beginning to give you guidance and hopefully save you from going through what I have been through, with the revolving door of Drs. and being over medicated twice, which landed me in the ER both times. I assure you that there is life after Parkinson’s, but the key is to get healthy and stay strong. To be continued…..
This picture was taken after we auditioned and were picked to dance in the Thalians Ball 🎭👯
Hi, very inspiring, Devi!