Just Who Do You Think You Are?

My first neurologist ordered an MRI of my brain in  2005. Five weeks later, I still could not get the results. I think that she was convinced that I had something called essential tremor which is a catchall term applied to any neurological disorder that doesn’t fit anywhere else. You would think in this day of genetics and DNA., every disease would have a unique profile and characteristics along with a test that determined whether or not one had that disease. But alas, this is not to be. Especially with PD. I did not yet have an understanding of what PD is and is not. After weeks of no response from the neuro doc’s staff I was ready to be rude. So I raised my voice and threatened to sit in their office until I got the results, but the immediate response was "Just who do you think you are? " While I was wondering who I was, they said the doctor was still on vacation for a couple of weeks (apparently a couple is any number greater than 2.) and I would have to wait. When the doc finally returned, she wanted me to come in for further tests (What, and wait another couple of months to get the results?).  All I wanted to know was if I had a brain tumor. (I did not). Nor did I go back to a doctor who could go away for “a couple of weeks,”  actually be gone for five and leave a patient who had Parkinson’s wondering if he had a brain tumor while she relaxed and thought he had essential tremor, not to mention that the patient thought he had ALS and would soon be tested for it.

So I started searching for another neurologist. My daughter helped with a recommendation from another doctor with whom she worked. But it took a while to get an appointment; and all the while, being an engineer by education, I was searching for an exact answer to what was causing the symptoms that were getting  more annoying. My right side muscles began atrophying. I didn’t realize it, but my growing PD problem was now shutting down the nerve connections to portions of my muscles. I was losing muscle size and strength and getting weak.

The symptoms were aligning themselves with ALS (Lou Gehrig Disease) more than with any other disease. I read more than I wanted to know and became sort of an expert in ALS. I remember being very distracted at work and at home. It is not a topic for casual conversation at either place.  It is also not recommended reading. Ever. That includes Tuesdays With Morrie.  On my first visit to the second neurologist, I explained what my symptoms were and he said that he wanted to get one test out of the  way. I already knew what test it was. We walked down a very lonely hallway to a small room with the machine that had one purpose and one test. I was wishing that I had someone with me. I knew the results would be immediate.

The doctor stuck some needle probes into my right side and turned on the current that tingled severely and would determine if I had ALS. There were red lights flashing, needle gauges pointing and beeping noises. I think. While the current was running and he seemed to be taking readings off a printout, he started typing into a computer. I could see the screen over his shoulder and saw what he typed. He typed something that concluded the patient tested positive for ALS. Let that sink in for a minute.

Stay tuned for more fun in my next installment.

Photo is Cold Spring Harbor at sunset in July 2018

Cold Spring Harbor,  July 2018