I got the horse right here
The name is Paul Revere
And here’s a guy that says if the weather’s clear
Can do, can do, this guy says the horse can do
If he says the horse can do, can do, can do.
I’ve got the horse right here, its name is The Latest Cure and my research says that if the weather’s clear can’t do, can’t do – there’s no miracle horse that will do.
Sometimes when I’m alone in my car, while waiting for a red light to turn green on a familiar route, I will stare as my left-hand flaps against the wheel like a fish refusing to go gentle into that good night. Back and forth — up and down it goes. I can change the pace of the muscular tantrum caused by dopamine’s absence. I can use my muscles to accelerate its rhythm or my will to make it slow but never, ever can I hold my hand, the hand that led me to the doctors, the diagnosis, the new normal, never can I still that hand completely. Same twitch. Day after day, after day. Sometimes I still have to say it out loud to believe it: “I have Parkinson’s Disease”. I did not see that horse in my race.
“How are you doing?” strangers – and friends alike – ask me with a gravitas that still surprises me sometimes. “Same twitch, different day,” I reply trying to assuage their fear. “So far it’s only a twitch,” which is not really the truth; the twitch is only one symptom of the larger disease. The twitch is getting worse – slowly, but surely. I can feel it.
“It could remain only a tremor forever,” they respond – imploring the Gods and my nervous system to make it so.
Can’t do, can’t do – this twitch is not all that PD will do. I have a neuro degenerative disease. I will get worse. Hopefully slowly. But southward I will head no matter how much all of us try to deny it.
Will do, will do, the doctors and I know PD will do.
My ever-optimistic mother hands me a WSJ article about the expanse of the Deep Brain Stimulation Market (DBS). Around since the late 1980s – DBS involves implanting electrodes into a particular brain region. It’s like a pacemaker for the brain.
When I point out the graphic showing that the surgery requires that a battery pack is implanted into the person’s chest to control the implanted electrodes her face loses its color. “You are nowhere near ready to explore this option,” she says, snatching the paper away. “I just thought that you should be aware of what’s going on.”.
She is 87 and loves me. But the rails that we will add to the couple of steps that lead into our Family Room won’t be for her they’re for me, the me I will become.
I remember the first Christmas with my in-laws after I was diagnosed. There were questions, fears, furtive stares at my twitchy, left hand. There were hugs. There were also offers to participate in fundraisers. “We’ve never had a family member with Parkinson’s Disease,” announced my mother-in-law to all of the adults gathered. “We’re here to help”
I wish I knew exactly how she could help. But I am loved. I am blessed.
And I’ll be riding this horse for as long as I can do, can do.