Saturday, June 25, 2022

MJF Disease


I had started to notice a number of physical changes in me that I largely wrote off to aging; after all, I was less than a year away from completing my sixth decade on this Earth.  

To begin with, I had started to slow down.  Everything seemed to take longer than it used to.  Take shaving, for example.  It suddenly seemed to take an inordinate amount of time to cover the lower part of my face with shaving cream.  

Formerly simple activities, like putting on a jacket or coat, suddenly became more difficult.  As I stuck my arm into my jacket sleeve, the sleeve of my shirt would slightly catch on the inside of my jacket liner, and even that slight resistance caused my whole arm to tremble slightly.  Pushing my arm all the way through just seemed harder than it should be.

Most disconcertingly, I had begun to notice that my hands would tremble slightly when I was sitting at rest.  I could stop the trembling by concentrating on relaxing all of the muscles in my arms and hands but, if I wasn't thinking about it, if I just sat normally, my hands would invariably start to tremble.

Months went by and the anomalies didn't seem to go away.  In fact, they seemed to worsen somewhat.  And new anomalies began showing up.  Most annoyingly (and embarrassingly), I started drooling out the right side of my mouth from time to time, and I didn't seem to be able to stop it.

Finally, I got concerned enough to see my family doctor about it.  She ordered a full spectrum of blood tests, all of which came back normal.  "I have good news, and bad news," she told me; "The good news is that I can't find anything wrong with you.  The bad news is that I can't find anything wrong with you, so we still have no explanation for the trembling hands, etc. that you've been experiencing.  My next recommendation would be to refer you to a neurologist."

Wow.  A neurologist.  That's a brain specialist, assuming that my vocabulary is still unaffected.  Does this mean that the problem might be in my brain?  That would be a bad thing.  I need my brain!  Appearances to the contrary, I use it quite a bit!  What could it be?  Parkinsons?  Lou Gehrig's Disease?  A malignant brain tumor?  (Answering myself in my best fake Arnold Schwarzenegger accent: "It's not a toomah!")  No matter; I had started down this road and I wasn't about to turn back now.  So my doctor made an appointment with a neurologist for me.

After allowing me to tell her, in my own words, why I was there and what kind of symptoms I had been experiencing, the neurologist began by asking some probing questions:

Do I smoke? (No).  Have I ever smoked? (Not regularly).

Do I drink?  How much?  (No, really, how much?)

Any recreational drug use?

Do I ever have any strange dreams?

Do I ever "act out" any of my dreams in my sleep?

How's my libido?

... and so on.

She then proceeded to have me do a number of tests, both physical and mental:

Repeat the following sentences / sounds after me.

Follow my finger without turning your head.

Point to the ceiling, then the floor, then the door.

Which hand am I waving?

Mimic my hand movements.

What is the object that I'm holding called? (A ball-point pen).

(Pointing at the tip of the pen) what is this part called?

(Removing the cap) what is this part called?

Name the months of the year in reverse order.

Count backward from 100 by sevens (most of the people I've told about this admitted that they weren't sure how well they would do at that one either).

... and so on.

I had expected her to suggest a CAT scan or some kind of brain X-ray, so I was a bit surprised when, having completed the tests, she told me "I am seeing some kind of Parkinsonism".

Parkinsonism.  As in Parkinson's Disease?  You're telling me that I have Parkinson's?

Truth be told, I wasn't taken completely by surprise.  I had suggested, jokingly (I thought) to some of those with whom I had discussed my symptoms that maybe it was Parkinson's.  But I wasn't really serious.  After all, Parkinson's is one of those afflictions that only happens to "other people", right?

The neurologist was, generally speaking, very thorough and professional.  Her only questionable action was to take my blood pressure after the aforementioned conversation and then commenting that my blood pressure and heart rate were "somewhat high".  I couldn't resist pointing out that it might just be a physical reaction to just having learned that I have an incurable, degenerative brain disease!  (Duh!)

She prescribed a drug called Levodopa.  Funny name, but the "dopa" part comes from the chemical dopamine, which is not secreted in adequate quantities by the brains of Parkinson's sufferers like myself. The drug apparently tops up my dopamine levels for me.  I have an appointment to see her again in about a month at which time she will assess how I'm responding to the medication.  This will apparently tell her more about what flavour of Parkinson's I have (apparently "Parkinson's" is an "umbrella" term that includes a whole spectrum of afflictions), how far my Parkinsonism has progressed and she will make further recommendations at that time.

In the meantime, I of course got into full Google mode and began researching Parkinson's.  One of the best resources that I've come across is the Michael J. Fox Foundation website, which has all kinds of great information and resources, including a downloadable pamphlet especially for newly-diagnosed Parkinson's patients like myself.

While I don't intend to turn this blog into a "Parkinson's" blog, I will likely be posting updates that I think may be interesting to my readers.  In the meantime, I'm asking all who know me to refer to my condition as "MJF Disease" rather than "Parkinson's", just because Michael J. Fox is much cooler than James Parkinson, even if James gets the credit for first identifying the disease.