My mother was the first one to notice. She was 92 at the time. I was 55. It was February 2014. She saw that I was carrying my right arm in a classic Napoleon pose, and that I was shuffling a little bit when I walked. I was pretty dismissive. 

I thought all I needed were some orthotics to support my feet better. I also had my elbow operated on a few months before that to take out some bone spurs, so I thought that was why I was holding my arm funny.

I got my orthotics that spring, but they didn’t seem to make a difference. I had shoes that now squeaked when I walked. I used to sneak up on my office assistant and stand in the doorway and shout her name. It was something I did in every job I had – a shared joke between me and my assistants, Jane, Harriet and Dechelle. Now that joke was over. Dechelle heard me coming every time. My squeak gave me away.

I finally went to the doctor that September. I guess I’m a slow learner. Dr. Bill Carimore has been my primary care physician for 36 years; we’re basketball friends too. I coached against his girl’s team. I always won. He started me on a series of tests. Bloodwork, EKG, reflex, all that stuff. He tested me for Lyme Disease. All negative. Next he sent me to a neurologist at Albany Medical Hospital. More tests. Lots more tests. Cat scans. MRIs. PET scan. One test where they shocked my arm 36 times with pins to test muscle reflex. That was to test for ALS.

I just wanted to find out what was wrong. I wasn’t really nervous.

One diagnostician told me that I didn’t have ALS, and I was lucky. I wanted to tell her I wasn’t lucky, I just wasn’t as unlucky as the guy who had ALS. If I was lucky, my future would have been Popeye chicken for lunch every day, a box of Yodels and a milkshake. If I was lucky, I wouldn’t have had any of this shit. I always get mad when someone tells someone they are lucky they didn’t die in an accident – they weren’t lucky, they just weren’t as unlucky as the person who did die in a crash. 

The way that they diagnose Parkinson’s is to rule out everything else. My daughter Michaela and my wife Mary Grace were with me in December when I got my original diagnosis: Parkinson’s Disease. It was Christmas week. I figured if Michael J. Fox could deal with it, I could, too. 

My feet were starting to swell up and I’d lost some motor control and a little bit of balance.

A top neurologist at Albany Med was to give me treatment. We went there once, and I wasn’t thrilled with him but I thought he’s the best, I’ll go with him. But at work at the State Education Department, Chancellor Merryl Tisch noticed my gait and asked my boss at the time, John King, what was wrong. When he told her, she came to me and asked – in her usual commanding way – who I was seeing for treatment. When I told her I was at Albany Med, she said “You can’t rely on the hicks up here. You’re going to go to New York and see the best person they have.” She actually knew the doctor that I’d be seeing, and she set up the appointment for me. She had her assistant get all my medical records and send them to this doctor.

Before my second visit with the Albany Med doctor, I got a call from Mt. Sinai Hospital in New York. I had an appointment. You can’t even get into this place. I drove down with Mary Grace and we met Dr. Naomi Lubarr for the first time. It was love at first sight. She spent almost two hours with us, talking about my case, my symptoms and my treatment plan. At the time, the plan was to have her consult on my case with my doctor back in Albany.

Then we had my second appointment with the Albany doctor. He was patronizing, treating me as if I was 12 years old, and dismissive. He was condescending. He didn’t listen to anything we had to say. At the end of the appointment, he told us he’d see us in six months, despite the fact that my symptoms seemed to be progressing faster than the typical patient with Parkinson’s. I had been doing my homework. 

Walking to our car, we decided we would make Naomi my primary neurologist. We would not go back to that asshole again. We had another appointment with Naomi that month. Now we were into March. On our second visit with her, we got a more specific diagnosis. Naomi believed I had Atypical Parkinsonism, the evil brother of Parkinson’s Disease. We talked about treatment and therapy. She was very aggressive and prescribed strong doses of assorted drugs and also a lot of physical therapy. You can’t slow the progression but you can take steps to cope with the symptoms. We spent another two hours there. She told me I was her most stoic patient. I had known my illness was worse than typical Parkinson’s.

I always deal with stuff by trying to laugh at it. My friends were the same way. They weren’t going to let me go through this without trying to bust my balls. We started to build a list of Parkinson’s jokes. “I’m going to apply for a job at Shake Shack.” “I‘m disappointed that having Parkinson’s didn’t qualify me for the Special Olympics. I would’ve entered boxing.” 

We also started to build a list of all-time Parkinson’s songs. “Shake Your Booty.” “Twist and Shout (Shake it up Baby!)” and “You Shook Me All Night Long” by AC/DC.

I started physical therapy at Sunnyview Rehabilitation Center in Schenectady. I could still drive at the time. My therapists were Lauren Lair for physical and Mary Pfiel for occupational. They were the best. They pushed me hard but I learned so much about my body as I worked on strength, movement and balance. Lauren had this saying, “Exercise is medicine,” and she was right. They had a new form of therapy called Big and Loud. She taught me seven exercises that I still do every day. After awhile I couldn’t get to Sunnyview anymore – it was a 45 minute drive – so I went to some local therapists, but none of them could hold a candle to those two. They were the only therapists who ever got my jokes.