EverydayParkinsons

I don’t know about you, but I have some seriously complicated feelings about Neurologists. I have met 3 .5 Neurologist in my life and all of them within the last year – in my opinion it was 1.5 too many.

My hand shook a few years before I went to to the doctor. It started in my right hand and I thought it was strange – nothing more. But I knew even then something was off. Hands just do not shake.

Then came Christmas time of 2023. Lets say this was a very interesting Christmas. I found out a I had a brother that was two years older than me that I had never met. But that is a story for another time. Now we are discussing the tremors.

By the time, Iris ,my daughter, made her annual pilgrimage to South Carolina the tremors were quite noticeable, but now in my right hand. It didn’t take long for her to notice.

I guess you can figure out what came next. I was ganged up on. I was harassed. I was harangued. I was cajoled. I was nagged. I was cajoled. When I finally relented to that terrible duo of evil haranguers and went to the doctor, he was very concerned and put me on a course of Sinemet 10/100.

Guess what my tremors went away! I spent my time pouring through the scary, scary information online about Parkinson’s. Just because the information is helpful does not make it any less terrifying. I loved my Primary but I discovered that a Movement Disorder Specialist ( A type of Neurologist) would probably help a bit more ,so I asked for referral to an MDS because that is what all the scary stuff told me to do.

It did not take long to get an appointment. It took about 3 and a half weeks. 3.5 weeks that I wrote down my tremors, wrote down when they were most prominent. Wrote down all of my symptoms.

The day of the appointment came and coincided with an appointment with my primary for a first check-in about my tremors. When he asked me how the tremors were after taking the Sinemet. I told him that they all had but disappeared except occasionally. He sighed and apologized. Apparently the meds only work on Parkinson’s tremors not the Essential Tremors. Did not know that. Do now.

Then came my Neurologist appointment

I was already freaking out and waiting for him to tell me I have Parkinson’s. I read what Parkinson’s does to people. Watched the videos online. In all honesty, I probably focused on more of the end of life scenarios (Yes, I know Parkinson’s does not kill you. Just the complications do) more than I focused on what I positive steps I could take.

And this is where shit goes wrong. Horribly, wrong.

He sent his Neuro student in to deal with me (hence the .5,) I am 100% convinced that Somewhere along the line of me arriving at the office and walking to the exam room, had decided I did not have Parkinson’s.

All that guy did was take a few notes.

Seriously, I told him about the sinemet working on the tremors. I showed him my notebook and the shakey handwriting. I told him everything. Then he went and got the real Neurologist.

When the .5 guy left, the real actual, Licensed Neurologist came in. Smug factor 100%. I don’t remember exactly what he said, but it was something like. ‘What are you doing here Mr. Gorman. You are displaying no signs of Parkinson’s.’

I told him what I told the .5 doc. Showed him the 8×10 glossy pictures with circles and arrows. Showed him my notebook. Told him of my symptoms.

Begrudgingly (oh I know an eye roll when I see one. I did raise a daughter,) he performed the standard finger and toe taps. Checked me for bradykinesia. Watched me walk down the hallway.

‘I see no symptoms of Parkinson’s’ Well, of course jack-ass, the sinemet I was taking was working like it should We all know that tone. That tone that says, “I am not going to listen to anything further you have to say.”

He said it was my Primary’s fault for prescribing me anti-depressant. He said I drank to much coffee. He said a lot of things. All of them proving why I do not have Parkinson’s.

He ended the appointment with saying, “I’ll prove it to you by scheduling a DAT scan.” Then walked out the door.

After that appointment, I stopped all meds. All anti depressants. All Parkinson’s medications. Well everything except my diabetes meds. I even cut my coffee down to one cup per day. If I did not have Parkinson’s why take the meds for it. If Anti-depressants make my hands tremor why take the meds. If too much coffee gives me tremors, why would I continue drinking so much?

Honestly, that was a humiliating experience in my life. He treated me like I was out of my mind and talked down to me and my wife.

After dropping the meds, there was one thing i did know, my hands shook more than ever and spread to my chin.

I mean, who the fuck wants to visit a Neurologist’s office? It is not happy happy joy joy time. There are no unicorns vomiting rainbows. No, it is terrying. Rather than assure me that everything was going to be okay, those 1.5 doctors choose to belittle and humiliate. You know what. Fuck them. Let’s move on.

Fast forward a few months later. I had my DAT scan. A few days later the results showed up in MyChart. It was freaking negative. I was so happy and so excited. This meant that I had Essential Tremors. I could live with that.

I had a different Neurologist for my follow up. (What? You think I did not complain?)

I told my wife she did not need to go. They were going to tell me I have the ETs and I would go on my merry way, she came anyway.

The new neurologist was very nice. I liked her. She said it looked like my test came back as negative since I was taking a certain medication. I could have sworn I had heard a car crash in my mind. I had stopped taking all meds 3 months before my DAT scan and the medication she mention I had never taken. It was just on my record.

Like I have said before, I am a liar but I am an honest liar, so I told her of my experience with 8×10 glossy colored photos with circles and arrows and said I have not taken that medication. In fact, it was a new antidepressant I was supposed to be taking but I never did.

I have this habit of hearing things sometimes and interpreting them in my head a completely different way with different words and everything. What she said was, “Well, in that case I am really sorry. Based on the scan and the new information I would confirm a Parkinson’s diagnosis”

“What I heard was, “you are going to die and probably very soon.”

I am not a tough man. Nor am I a weak man. I am just a man. However, I cried and babbled incoherently for who knows how long. My wife cried. The doctor cried. Although, my wife does not remember the doctor crying, I clearly do. How could she not. I mean you have met me.

Things go blank after that. I do not remember the ride home or the rest of the day. Well, there was one thing I remember. I think this is the most disturbing thought I have ever had. “I showed the Mfer!” think about docs 1.5. Inevitably, came the next thought in the cycle, I wish he had been right.”

Stuff like this was not supposed to happen to me. I mean it always could happen but things like that just did not happen to me. It happened to others.

I know this is not a light or humorous story, but it is true. 100% (with creative license., a few exaggerations, but no out right lies)

I am going to end the story here and go find a way to cheer my self up. Maybe put together a play list for the reddit folks of r/parkinsons or go cook a nice dinner for Julie.

Although this really sucked, I have hope that there are good doctors out there that care and have my best interest at heart. So far I have found 2 MDS’ that have proved that to me. I found 1.5 that proved the opposite. I think the good has won over the bad. I like to think that it will continue that way ad infinitum.