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