An opening line from Eureka on SyFy tonight. When I heard that phrase I knew it was to be the title of this blog post.
This was an interesting week indeed and in a way it has been messy. I saw my new neurologist for the second time on Monday. At my first visit with him in May I could tell he was suspect of my diagnosis of Parkinson’s disease, a neurodegenerative disease, which I was diagnosed with 15 years ago. He asked me to come back in two months off my neuro meds, so I did so on Monday. After the long examination and assessment he said, “If you came in here today and I didn’t know your medical history, I would say you did not present with Parkinson’s disease.”
I had suspected that response, but is one thing to suspect it and think it, it is an entirely different thing to hear a doctor say the words. I was so taken aback that I couldn’t think of all the questions I should have asked right then and there. He wants me to come back in two months, which turned into three months by the time I got to checkout. He also wants me to have a full psych exam, the one that takes three to four hours.
I immediately went into emotional overdrive, which is typical of me. I began to blame myself for all of this. You see, after my marriage broke up in 1985, I went back to work. Over the next 15 years I pushed myself into bigger and bigger jobs. But, I would do two things almost daily; 1) I would sit at my desk and wish that something would happen to me so that I wouldn’t have to work anymore, this was always due to misplaced fear; baggage from my childhood, and 2) I had a dreaded fear of voice mail. Even though I knew there was nothing to fear I did fear it. I still do this today with email. I have days when I will not sit here at this computer and not open my Outlook. I just know that there must be someone yelling at me in there, which is never the case.
Back to the topic, by the next morning, Tuesday, I was a mess. I didn’t know which way to turn or what to do with this information from Monday. I couldn’t talk to my eldest daughter, who is 39 yrs of age, and whose home I was headed for on Tuesday morning…by 7:00am. (I had grandmother duty on Tuesday.) She does not want to talk about serious things, stating that autism is all she can deal with (my youngest grandson is autistic.) I spent the balance of Tuesday, the entire day, on the verge of hyperventilating and in need of a good cry, but I could not indulge in either of these because I had my grandsons with me and I didn’t want to cause them alarm.
By the time I got home at 6:30pm I was a real mess, having held in all those feelings all day long. I agonized over calling my psychologist…yes…no..yes…no. After spending time with this internal tug-of-war I called him. I have been seeing him for three years now on a weekly basis. As has happened before there was that oh-so-calm therapist voice, “What can I do for you Miss Carolyn,” I began to get a grip on myself. I don’t know that I will ever stop going into self-imposed emotional overdrive about things that crop up in my life. He tells me it part of having Major Depressive Disorder (MDD.)
Well, the week proceeded as all weeks do. On Wednesday morning I was okay, which surprised me. I began to be able to focus again and began to consider what my ‘game plan’ should be. If this was true, being misdiagnosed 15 years ago, then three very distinguished movement disorder specialists (MDS,), from three different Universities, that I have seen over the past 15 years are wrong and I have been mid-diagnosed. It also would mean that the five clinical trials I have been in over those 15 years have skewed data. The latter trial is a surgical trial; surgery on my brain! Talk about skewing the data!
Being misdiagnosed, if it is true, is a good thing, but it is also somewhat complicated. I wouldn’t have this neurodegenerative disease for which there is no cure…the good thing. But is would complicate my life. I have not worked for almost 10 years and I am 60 years old. So, an employer would see me as somewhat unskilled; assuming that I have lost my skills. But, this issue is not something I have to work on at this point in time. I will do the neuro-psych exam and see the MDS neurologist for her opinion. This will take a few months.
By Thursday I began to form a definite plan of action. I emailed my Clinical Trial Coordinator and told her to call me. I needed to tell her of the assessment of the neurologist I saw on Monday. We chatted on the phone today, Friday. Of course, she has to email the Principal Investigator (PI, the title given to the movement disorder specialist who is responsible for the trail protocol at a given clinic/site.)
So, for a second opinion I will see one of the three MDS I spoke about, tell her what is happening and see what she has to say. I know she will then get the phone with the PI and they will discuss this.
So, yes, it has been a messy week for me. And the messiness continues.