Chapter 1-First Signs

It is hard to believe at first-no less accept!

“How could this be happening to me?”But it was ... signs that a strange disease had not only begun to afflict me but at an uncommonly early age- having become part of who I was and how I carried myself.

We do not give much thought, if any, to how we move our bodies. It’s something we just do, but when all that begins to change, when you progressively can no longer control how you carry yourself, it begins to become an almost all-consuming preoccupation.

I was 46 years old.My friend Kathy, a nurse by training, made the first diagnosis that my internist later confirmed-manifesting “Parkinsonian symptoms,” as I saw he had scribbled on my chart. So … what were they, these signs?

My Left Hand and Arm ...

Have you ever looked carefully at how you walk? Well, if you haven’t, you really should! One characteristic of a normal gait is that your arms swing freely and involuntarily at your sides. Again, this is something we don’t notice ordinarily until it stops. Walking with Parkinson's became a conscious and often frustratingly futile effort to restore what had simply been an almost instinctual ability. Yes, of course, we learn to walk around the time we pass through the "terrible twos," but after so much time, it's something we just do like ... breathing for example.

But what do you do when your left arm not only does not swing freely but becomes “glued” to your side? Well, I tried on innumerable occasions to force it to swing by commanding it, in effect, to swing!

Have you ever seen a grown man talking to his arm?"Swing! Damn you. Swing!"

And at times it worked, but despite my best efforts, it has never returned to its earlier normalcy. My continuing efforts to remedy this were at once both futile and, I fear, farcical at best. However, had I not tried, my arm “would have done as it wanted” which it did do in any case most of the time.The practical effects of this are that it affects the rhythm of your gait; in other words, your walk becomes a limp. Additionally, self-conscious awareness and worriment about how others see you become constant concerns, I have always thought, worse than the affliction itself. When I am not walking, my arm positions itself involuntarily across my chest as if cradled by an invisible sling.

"It sux!" as the kids say these days.

As a boy, I remember having read Johnny Tremain, a revolutionary war story of a teenage apprentice silversmith who burned and disfigured his hand when a mischievous younger assistant purposely handed Johnny a cracked crucible of molten silver. Predictably, the crucible broke, spilling its infernal contents onto the furnace and floor.

As a consequence, Johnny slipped and burned his hand that became permanently disfigured after a midwife, called in to treat his injury, erred in treating it properly, fusing his thumb to the palm of his hand.

Whenever I put my left hand into my pants pocket in the hope of appearing normal, I think of Johnny Tremain who practiced the same subterfuge. It offers only temporary relief at best and truthfully does little, if anything, to restore the appearance of normalcy.

Left Hand Tremor ...

For quite a while, the problem was confined to my left hand and arm. It has gradually spread to my right hand although it remains not as badly affected as my left.One important consequence of the spread of this disability to my right hand has been its effect on my handwriting.Not that my penmanship ever won any awards for artistic calligraphy, but there is another manifestation of Parkinson's called “micrographia." What happens is that the lettering of one’s penmanship becomes very small to the extent that it is not only difficult to see, but becomes illegible as well. Parkinson’s affects many of our motor skills, especially the fine motor skills we have taken for granted since childhood.

A while back, my doctor, a noted PD specialist, asked me how I was doing to which I rather flippantly responded: “Would you like to watch me button my shirt?” Mind you, I am not in the habit of responding sarcastically to sincerely asked questions, but Parkinson's is an especially frustrating malady as you witness little things like buttoning one's shirt fall by the wayside.

Point being that though I do take medication that tends to ameliorate these symptoms, the reality is that the medications are variably effective. Also true is that when I have been late taking my prescribed dosages or that I have run out of a particular medication, the consequences are severe. All of my movements slow down as if I were suspended in slow motion. It becomes exceedingly difficult to do what otherwise are the simplest things. Under these circumstances, try taking change out of your pocket or writing a check.

I illustrated it once by telling a friend:"Put both of your hands behind your back. Now pick up that box in front of you!"

Remember the last time you felt normal? Sounds like a strange question, but it really is not! I have not felt good for six years. Yes, there have been times when I felt happy, when I was joyous, but I don't mean that. I do not think there has been a moment in these six years when I haven’t been embarrassingly aware of how misshapen my movements have become at times.

When the symptomology reaches a certain point, there is no more hiding the effects of Parkinson's. If you have ever seen your reflection in a window as you walk along the sidewalk, then you know what I mean. However, I would be remiss if I did not mention the fact that about one year ago while at work, I reexperienced the joy of normal movement. It lasted for about an hour. I do not know why it happened. Maybe the chemistry of the "meds"' came together in perfect fashion for that brief time. Whatever it was, I do know that I was smiling gleefully. It was as if some unidentifiable force had overtaken me, and oh how I welcomed it!

And there are occasions when I can swagger with the best of them! More to follow.