
Essay 2 October 10, 2024

Take Me Out To The Ball Game.
Strike One
After returning from Portugal, I faced the challenge of battling Parkinson's Disease, a struggle that felt futile. A few incidents occurred, which I viewed as strikes against me. Strike One happened while biking to the barn to ride my horse, a 15-mile journey each way. On Holland Avenue, heading to the bike path, I experienced a familiar fall, just like in Portugal. My body became "stiff," and while waiting for the light to change, I tipped over into the road, arriving at the barn with a bleeding knee—nothing serious, just a skinned knee like when I was a child. However, on my way home, I fell again as I left the barn. Did I know this could happen? Yes. But the power of denial is extreme.
Strike Two
My friend Peg and I were riding on the rail trail, and she had to take a professional call. So I stopped, and then it happened again. I just tipped over. There was no denial this time. I called some of my physician friends. I met with one - by this time, my tremors were very obvious. I saw a local neurologist (actually a PA). Not that I needed to; I knew I had it.
Strike Three
I called my friend Seth. We had worked together for years, and then he left the 518 for a VP job at Mount Sinai. He got me to see the director of the movement disorders clinic. Peg came with me. I did not wait more than 5 minutes before a Nurse Practitioner arrived. She spent 30 minutes collecting information on me and performing some tests. Then, I met with Dr. Tse, who spent an hour with me. They both talked to me about what was happening. They then told me about the meds. I take 3 for PD now. I take Sinemet, Carbidoba and Premidone. This will not cure me. I was told most kindly. But it was not a revelation. If I take the meds, and now I do, people say things to me like - "You would barely notice." The Barely is all I hear. I've always been vain about my body, so it makes it challenging. It is not normal aging. I am on the triple black diamond of life. Some send me Tic Toks or other SM videos showing people taking a "new" drug. They are all marketing videos. No drug makes you better all at once, and as one of the many who have this, I find these videos cruel. Not cruelty from those who share them with me; not at all people mean well. These videos (including the marketing of Deep Brain Stimulation) are marketing. Of course, I used to "peddle" healthcare procedures as a CEO. It is a huge Karmatic slap. It is easier now to accept the reality than to subject myself to silly clips that are nothing more than a hook to lure me in. The meds are brutal. Like many, these meds can make a person so sick for about an hour after I take them. And I have to take them three times a day. So I feel shitty for 1 hour after I take them, then I feel okay, but still not like me. My PD affects my legs, hands, and my voice. And it is a weird fucking journey. I can walk upstairs easily, but going down, my legs stiffen, so it is more challenging.
Sometimes.
Sleep is often elusive.
There is nothing good about Parkinson's. Nothing.
So now what to do? Obviously, with my career, I am no stranger to the aging or sick brain. I know I will not be cured. I am still trying, after so much time, to figure it out.
And selfishly, I wish it was not my brain, but it is.
I have been very clear in my life about personal agency, so this is scary for me. I imagine, though, that this fear of losing one's abilities happens to everyone at some point. I just got put in the front of the line.
I know this reads dark, but I am so grateful I did not wait to do things in my life. If there is a silver lining, this would be it.
Ride a horse. Ski. Skate. Run. Bike. Have lots of sex. Travel. Listen to music. Forgive people and more importantly forgive yourself.
This journey is not never ending.
Writer Travel