Mr. Potato Head - Is This Really Happening To Me?

On Friday, June 6th I dropped off my children at school per usual that morning, and pointed the car toward work. It was a routine that I was quite used to, hum-drum in its predictability, and this day promised to be no different than any one of a thousand others from years gone by. At least that’s what I thought for the first few blocks of my journey. Little did I know that my life was about to take a dramatic turn less than half way to my destination as I stopped for a red light just a few blocks from the city line.

It was then, while sitting in my vehicle, waiting for the light to turn green that all heck broke loose somewhere deep inside my brain, sending me for a loop that I have yet to fully recover from.  I was confused as I watched the  traffic light change from red to green. Looking out the window, first to my left, then to my right, I had absolutely no idea where I was, or where I was supposed to be going.

I was lost on a city street that I had driven for over twenty years.  Buildings that lined the street on either side of me, landmarks that I had known all my life, were suddenly unfamiliar, looming out of perspective as if taunting me. It wasn’t until I read the street sign on the corner of the intersection that reality finally came crashing back in. Remembering where I was, I continued on my way to work slowly, trying to make sense out of what had just happened.

Events at work did not go much better. Although I didn’t have any more periods of confusion like I did on the way there, I was having a very difficult time just trying to think. Having dealt with the symptoms of Parkinson’s disease for many years, I was more than aware of the phenomenon most of my fellow “Parkies” refer to as “brain fog”  -  periods when the act of thinking is like walking through a dense fog; you know what you are looking for, and you know it is right in front of you, but it takes a little longer than normal to focus on it because of the “fog.”

Unfortunately, what I was experiencing was more than the typical fog. Trying to form a coherent thought was more than walking through a shroud of mist; it was more like trying to slog my way through a giant bowl of mashed potatoes.

To say that I was terrified does not even begin to describe what I was feeling. I thought I was losing my mind. The simple act of thinking was no longer simple. Not only was it time consuming, but it was physically exhausting. The only thoughts that readily popped into my mind with little to no effort were those involving Parkinson’s related dementia.

Yes, Parkinson’s disease has its own type of dementia (most commonly Lewy Body dementia) Being a nurse, I have taken care of more than my share of patients with Parkinson’s related dementia, but it was something that wasn’t supposed to happen to me. I’m not saying that simply because I never thought it would happen to me. I’m saying that because statistically, people with Young Onset Parkinson’s disease typically don’t get Parkinson’s dementia.

Then came Saturday. Thinking was still like trying to do the “doggie paddle” in a bowl of mashed potatoes, but other than that nothing strange happened.  The events of Friday had proven to be a mere fluke. I was in the clear.

Then came Sunday…

Sunday afternoon I tried to mow my lawn, but wasn’t able to start the lawn mower. Not because I couldn’t physically start it, but because I stood there staring at it with no idea how to start it - the very same lawn mower I had used the week before, the very same own I had used for the last year.  So much for being in the clear.

That episode of confusion brought me to the emergency room. Something was definitely wrong, and I needed to get to the bottom of it. The doctor in the ER tried for over 2 hours to contact my neurologist to no avail. (Long story that no one wants to get me started on)

After giving up on my neurologist, the ER doc ran blood work and a CAT scan. The good news was that all of those tests turned out negative - no signs of infection, tumors or stroke. The bad news was that he didn’t feel comfortable treating me without talking to my neurologist first - a perfectly logical and reasonable decision. So, I left the hospital, no further ahead than I was when I arrived there.

The following day I called in sick, still experiencing difficulty thinking…not a good sign for a Registered Nurse, and certainly not a safe situation for myself or those that would be relying on me to make critical decisions.

The good news was that I managed to get a last minute appointment with my regular doctor (not the neurologist, he still wasn’t returning calls)

The bad news…considering my symptoms, the doctor said I could no longer work or drive, at least not until the problem was solved. Again, a logical and not unexpected decision, but even though I expected the outcome, it was nothing less than earth shattering.

The next 3 weeks consisted of a host of phone calls to my neurology team, 2 days worth of grueling tests on my memory function, my ability to problem solve and to think rationally, followed by another weeks worth of trying to get my neurologists to return my calls about the tests, with no end in sight to my symptoms. In fact, not only was I having a hard time thinking straight, I was also becoming more and more physically exhausted.

Finally I received the test results. The good news -  I don’t have dementia. My memory function and ability to think and reason, albeit difficult, was above average for someone my age with my education.

The bad news - they still didn’t know what to do, but promised “we’ll call you back in the morning.” Yeah right…

For the last month I had been asking if it was possible that I was over medicated, but never got a straight answer.  Finally I took it upon myself to stop all of my PD meds  (don’t ever do this without consulting your doctor - I only did so after consulting several of my professional colleagues and getting advice from a pharmacist, and even so I still took a huge risk)

Two weeks after being off all of my meds I can finally think straight. Unfortunately, with no meds to control the Parkinson’s, my physical symptoms have taken a huge downward spiral, turning simple every day tasks  into an adventure worthy of Indiana Jones. Needless to say, even though I could probably function at work mentally, I am in no condition to do so physically.

But all is not lost. I have since found a new neurologist, one that has been most gracious in returning my calls, and we have come up with a tentative plan. He looked at my medication history and agreed that I was being majorly over medicated, especially with my past history of bad reactions to medications.

For the last several days I have been taking a very small dose of a single PD medication. The plan is to titrate the dose gradually, hopefully controlling my physical symptoms without bringing back the confusion. If all goes well and we find a happy medium I will be back to work within the next 2-3 weeks.
If not, well… I don’t want to think about that.

Any and all prayers, well wishes and positive thoughts will be gratefully appreciated.

©2008 Day By Day Adventures Of The PD Warrior. All Rights Reserved.

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