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The Long and Frustrating Road to a Parkinson's Diagnosis

For months, actually years, I had watched my body, bit by bit, betray me. I could tell that something was not right. I just did not feel like myself. (Granted, if you know me, you know that I have never been quite right, but this was different.) In spite of my other physical issues, I began to notice changes; I was starting to have more and more difficulty doing even basic things.

I really started to notice the difference when my tremors became worse. I had been to two different neurologists, both of whom told me I merely had essential tremors. It was nothing too serious, and not something to be worried about. In the year before this appointment, there had been a steady slide in my health.

I began to have difficulty gripping things and doing just about any task with my hands. Writing and typing became almost impossible, and I was left to dictate anything I needed to send out. I grew a goatee because shaving became very difficult. Combing my hair, getting dressed, even brushing my teeth, took forever, and sometimes, I could not even do this. I felt humiliated because I was 43 and needed my wife to help me get dressed.

I struggled with being motivated and focusing on the task at hand. Many times, I was left searching for words, or for my train of thought altogether. Every time I would see the doctor, I was told the same things, “This is the essential tremors,” or “You’re too young for something like Parkinson’s.” Every conceivable blood test was done. If a part of the body could be scanned or imaged, it was. Each and every time, the doctor would call back and say, “Everything looks normal,” and once again, we would have no answers. Disheartened, discouraged, and so tired, I really began to think I was just losing my mind.

As I sat in the office of my third neurologist, he looked at me and said, “Are you depressed? Have you ever been diagnosed with depression? That could be causing the problem.” I sat there, stunned, and thought, really, that is all you’ve got – I’m depressed? “Of course I’m depressed!” I wanted to scream. “I’ve gone from doctor to doctor to doctor, and I still do not have any answers. I feel like crap. I can’t do any of the things a ‘normal’ 43-year-old should be able to do. I get test after test done, and they keep showing nothing is wrong with me, yet I know that is not the case. Yes, I am depressed, but that’s not the problem!”

I wanted to scream, and I became more and more discouraged. I thought, “Maybe this is just all in my head; maybe there really is nothing wrong with me.” No matter where we looked for over a year, there were no answers, only more questions.

I was exhausted, I saw no light or answers in my future, and I was just so tired of fighting. As a person of faith, I struggled even finding comfort and strength in that. It is easy to have faith when we have all the answers, but true faith and trust require belief, even when we do not understand and cannot see the answers, and at this point, I was not even sure I could rest in that.

As we approached this appointment (with a fourth neurologist), I went in with very little hope, expecting to hear the same thing I had heard over and over again. So many emotions swirled through me. I was so afraid that they would find something wrong, but at the same time, fearful that they would not. I was discouraged, because time after time, I had been to these professionals and heard, “Everything looks fine,” even though I knew it was not. Above all, I was tired. I was so exhausted physically and mentally from fighting the unknown in my body, and I really did not know if I could go on.

The more people with Parkinson’s I have met over the years, the more I have realized how common this story is. So many have walked the same path and battle as they sought to find answers. So many have experienced the same emotional ups and downs. With no definitive test to diagnose, finding answers can be frustrating, hard and discouraging, and many times takes multiple doctors.

As I sat there, waiting to see my new specialist, I sat there with very little hope. I wanted answers, but at the same time, I did not, because most likely, the answer would not be a good one. I knew Parkinson’s (or something difficult) was probably waiting for me in that exam room, and if not, then maybe it was just in my mind. Either way, as the doctor came back into the room, I knew I would not want to hear what he had to say.

Whether answers came or not, I had a choice how I would walk forward. When he said those four little words, everything changed. I had an answer, but it was an answer I did not want. I realized that even after I finally had the answer that I had Parkinson’s, I still did not have all the answers. My future was as uncertain as it ever had been, and my choice was still the same – I could choose to walk in faith and hope, or I could choose fear. It was a choice I would have to make each moment on this new journey. Either decision would drastically affect my walk forward. I do not know what each day will bring, or the choice I will make in the future, but today, I choose hope.

Other Stories and Resources:

The Mighty’s Guide to Parkinson’s Disease

The Greatest Gift a Doctor Gave Me

You can follow our journey at www.minesparkinsons.com and purchase Charles’ books on Amazon: “Mine’s Parkinson’s, What’s Yours?” and “What Christmas Really Is All About.”

Getty image by Cristina Nixau.

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