Happy Anniversary to Me? 5 years with PD.

5 Years Ago @ P.A.I.R. Training

On July 24, 2015 I was diagnosed with PD.  (I have probably had Young Onset Parkinson's Disease, YOPD, since my early thirties, but I will get to that.)  On Friday, July 24, 2015, I walked into Dr. Jori Fleischer's office at the NYU Movement Disorders Center and I was diagnosed with Parkinson's Disease. 

All the signs were there
I had been diagnosed with frozen shoulder 3 times, my toes were curling under involuntarily, my gait was off and my right arm was not swinging naturally when I walked. There were others signs as well, I had lost most of my sense of smell, lost weight and people were always saying "huh" whenever I spoke.

Looking back on it now, there were times, long ago,  when I came close to being diagnosed. I had a slight tremor that developed at around age 30.  At one of my regular physicals, my doctor said:

"Stand with you feet shoulder width a part, hold out your arms and spread your fingers."

To which I responded:

"No"

"We need to do something about that tremor," he said.

Then he asked: "Does anyone else in your family have that?"

I told him that my mother, my aunt and at least one cousin had it.

He asked:"How do they treat it?"

I replied: "We all pretend not to notice it."

I just did not want to be a person with a tremor. (Yes, I realize that this is the same flawed logic that applies to the statement, "If we stop testing, we will have less cases of COVID-19.)


To which he responded:

"The American Medical Association, does not recommend denial as a treatment option."

He also mentioned that it might be Parkinson's Disease, but since it did not run in my family, it was doubtful. I quickly forgot about that, until the memory of that day came flooding back to me on July 24, 2015. He gave me a script and I picked it up and immediately jumped in a cab to airport and boarded a flight to Berlin.  It was winter in Berlin and my hands and feet were freezing. This turned out to be  a side effect of the medication, so I ditched the pills.

The spring prior, I had lost 35lbs due to becoming a vegan and a new workout regimen.  All winter, I was freezing, but I wrote that off to the weight loss.  Now I know that People with Parkinson's Disease often have the inability to adjust to temperature changes or thermoregulatory disorder.

Then, came the repeated cases of frozen shoulder.  I wrote this off to weight lifting and swing dance aerials.  It was the 90's the Gap swing dance commercial hit the air waves and it seemed like everyone was swinging! I was mediocre dancer at best, but I was good at aerials. In any case, I ignored another warning sign.

Next, came the dental issues, which I never knew until 2 years ago were associated with  with Parkinson's disease. The implants nearly bankrupted me.

I was diagnosed and being treated for Cyclothymia, which I kept secret out of fear of being judged. Now I realize that my untreated mental illness damaged many interpersonal relationships. (Sincere apologies to those that were affected by this.) The above aside, I was hit with a case of depression so severe that there were days I did not get out of bed.

Then, at age 47, I found myself at a Neurologist, who after hearing my symptoms, simply blurted out:

"Well, these are all the classic signs of Parkinson's disease..."

She went on to say, that I needed to see a Movement Disorder Specialist to be certain. The appointment was less than 10 minutes and afterwards, I was on a hot New York City Street, all alone with no literature, no referral, no hotline number, no nothing.

Two sleepless weeks later, I met with a movement disorder specialist and had a diagnosis...

And then...
If you asked me 5 years ago what bothered me the most, I would say,:

"The shuffling gait and embarrassing tremor." 

Now, however, I am no longer embarrassed and I feel that my worst symptoms are shortness of breath, fatigue and thermoregulatory disorder. I used to love putting on flip-flops, shorts and tank top and heading out on a 90 degree summer day. While I still love the beach, summers are a bit of a struggle.

My Life With Parkinson's Disease
Since my diagnosis, I  have became A Patient Advocate In Research (PAIR) with the Parkinson's Foundation, appeared on three episodes of Parkinson TV, been the co-recipient of a small grant, contributed to one article, gave the patient perspective on another and recently, I have co-authored an article that will appear in the Journal of Parkinson's Disease.

I have a beautiful loving wife and a brilliant, quirky nine year-old son. I have a great job at Queens College, CUNY, and supportive family, friends and colleagues. In short, I live a good, full and happy life.

How is it living Parkinson's Disease?
I will not sugar coat this, it sucks. The fatigue makes it difficult to play soccer with my son and I could do without the depression, anxiety and frequent trips to the bathroom. I take 4 pills each morning, that are burning a hole in my stomach and three additional pills throughout the day. I can no longer write by hand and I struggle to type. During off periods, when my medication is not working, my head constantly shakes, as though I were saying no to everything and I walk with a limp.

I also realize that I am one of the lucky ones. I do not suffer from cognitive impairment and probably never will. I can still work and probably will not retire any time soon. Hopefully, I will live to be a very old man and dance with my wife at my son's wedding. He is only nine, so I will not  start pressuring him for grand children, yet!

Happy anniversary to me...

Thank you for reading.