My journey began long before I was diagnosed with Parkinson’s disease (PD) five years ago at the age of 54.
The first symptom I noticed was my hands were shaking occasionally. I saw several specialists and was told it was essential tremors. Eight years later, the tremors were nearly constant. Co-workers told me I looked “stone faced” and mad. Then, during a presentation in front of a large audience, I froze mid-sentence. In my mind, I knew what to say next, but my mouth wouldn’t cooperate. I was stuck. Fortunately, it only took a long 45 seconds before I could get the words out. Other job duties were also proving to be challenging and my supervisor was less than thrilled.
Something was wrong, but what? I researched my symptoms on the Internet. Aha, hyperthyroidism can cause tremors. Maybe, my thyroid medication was too high. My doctor sent me to a Movement Disorder Specialist. Internet information is great until you read something you don’t like, like that Movement Disorder Specialists treat Parkinson’s. There’s got to be a mistake.
I saw the Movement Disorder Specialist. Two hours later, I was diagnosed with PD. I’m sure the earth stopped spinning. She told me she’d take good care of me and to try not to worry. You just told me I have an incurable and degenerative disease, why would I be worried? Lots of tears were shed, along with Why Me’s followed by devastation. I tried to be brave. The hardest part was telling my children. They were devastated and scared too.
My doctor’s first plan of action was medication. There were pills to take with food, without food, every three hours, every six hours and at bedtime. I had to get one of those pill holders with days and times on them and set a reminder. My medicine closet was beginning to look like my grandmother’s. The medications were making me sick with side effects like nausea, headaches and fatigue. The pharmacy notes listed anxiety as a side effect. I’d been anxious, since the words “You have Parkinson’s” came out of the doctor’s mouth.
The medications didn’t work well enough, so the doctor recommended deep brain stimulation (DBS) surgery. By now not even brain surgery shocked me. The surgery would help control the tremors and other PD symptoms. I thought, “She wants to put metal probes into the deepest part of my brain and attach the wires two batteries buried in my chest to make my life better? I have to shave my hair too? And she’s going to wake me up in the middle of the surgery and talk to me so you can make sure the probe is placed properly?” I didn’t have much of a choice. DBS was my best option to protect the neurotransmitters that were still working. I had the surgery the following month.
I confess, until I was diagnosed, all I knew about PD was what I read about Michael J. Fox and Muhammad Ali. I equated PD with uncontrollable tremors. Now I know, the tremors are the tip of the iceberg. PD affects everyone differently and there are a myriad of symptoms (movement and non-movement) that come along with it.
Living with a progressive degenerative neuromuscular disease means realizing I’m not going to get better. Today is the best I’m EVER going to be. My symptoms will worsen over time. PD is relentless. Without my consent, it silently crept into so many facets of my daily life. When I feel like I’ve lost another part of me; the shock, denial and grieving process start all over. I was once told, “I used to think you were one of the smartest people I know. You could do anything you set out to do. Now, I see you struggling with things you used to do with ease. I miss the old Julie.” I miss the old Julie too. This is my new reality.
I had two choices, let this disease take over or fight back. I choose to fight back vigorously. PD messed with the wrong girl, I’m doing everything I possibly can to fight the progression. I watch my diet and take my medications as prescribed. I exercise, taking a non-contact exercise program designed specifically for PD. We work on balance; gait, strengthening and we get to hit things! Believe me, it helps to hit things. The workouts are 90 minutes long, several times each week. I feel a sense of freedom when I’m working out. Everyone there has one purpose, to fight PD. I feel like I belong, and I don’t have to hide my tremors. We have become like family. I’ve made it my life’s goal to laugh as much as possible, enjoy life’s little moments and to make sure I check things off my bucket list.
Whether you are newly diagnosed or have had PD for a long time; I hope by sharing my journey you will feel like there’s someone else on this same path. I make a conscious effort to approach PD with a positive, I can’t fail attitude. I use humor and laugh a lot, often at myself.
I’m going to enjoy life as much as possible. I am also working on checking things off my bucket list. Not that I’m planning to check out anytime soon, but there will come a time when it will be more difficult to do some activities. There are some silver lining moments along the way. I’ve met some incredible people and made some great friends. I’ve discovered I am a lot stronger than I ever thought I could be and who knew there was an athlete hidden inside me?
The Parkinson’s Foundation is here for you through all stages of Parkinson’s. Call our free Helpline today at 1-800-4PD-INFO (1-800-473-4636) weekdays 9 a.m. to 8 p.m.