What if I were to admit that I don’t always cope? That sometimes, in the middle of the night, when the world is quiet and the air still when my fears pop up like ghosts of what might be, well… I don’t cope well at all. Lewy Body Dementia (a type of mental impairment associated with PD – the one that apparently drove Robin Williams to suicide) and other manifestations of cognitive impairment frighten me. Might there be a time when it won’t be a joke that I’ve lost my mind? Or, might my disease progress like Dr. Thomas Graboys’ did – quickly forcing a brilliant doctor to give up his cardiology practice before dying at 70. In the quiet of these nights I will my left hand still– and lie on it when it can’t comply.
Then, there are those who ask if they can help me during my ‘rough patch’. I go for beautiful walks or lovely meals with these well-meaning people and explain my journey. In September, I saw my first neurologist. “I want you to get a closed MRI to make sure that your brain is okay,” the doctor said after asking me to follow a pencil across a horizontal plane, walk down a hall and jump through several other clinical diagnostic hoops. Indirectly and more tactfully than I retell it, she said that there were three options available to explain my tremoring left hand: brain tumor; multiple sclerosis; or Parkinson’s disease. A month later, the MRI revealed my brain was (relatively) okay. A month after that I walked down another hallway in front of another neurologist who asked me to perform another, more elaborate set of diagnostic tasks before making it official – Door Number Three was the winner. It’s Parkinson’s disease (What? No parting gifts?) And with my new perspective, being merely a Parkie is a relative relief. We commiserate by sighing, our expelled breaths mixed with relief and resignation – and the realization that this is not a patch, it’s my life.
I will tremor (and hopefully only do that) until my last breath. But if I end up with dyskinesia or other impaired movements, I know that I’ll be able to adjust, as I’ve never been particularly coordinated or especially physical. If a wheelchair is to be my fate, so be it – as long as I have my mind. Amazing what a little perspective can make palatable.
So, yes, I’m coping with this “rough patch”— which I hope will continue for decades. After all, if life were all smooth sailing, it’d be pretty dull.