I was diagnosed with (first time) with Parkinson’s Disease in December 2006 at Einstien Medical Center (Elkins Park). I noticed a tremor effect my right thumb and was starting to develop a very noticeable gait.
“There’s no easy way to say this Robert, you have Young-onset Parkinson’s disease”.
I froze and proceeded to ask the Neurologist, “Like Micheal J. Fox? She answered, “Yes. Like Michael J. Fox (who was also diagnosed at the age of 28 and due to our similar diagnosis happens to my idol and inspiration). I left the hospital dazed and confused, little did I know what I was about to deal with at home, telling family (well so-called family and friends) was going to be worse than the diagnosis itself.
Those of you who have a Parkinson’s diagnosis or a family members or friend who have the disease, know’s what a horrible disease it is. The most important thing to remember is that Parkinson’s is a different progressive disease for every single person.
If you are not familiar with Parkinson’s I’ll try to explain what I go through on a daily basis on a yearly basis. Parkinson’s Disease is a chronic progressive neurological disease chiefly of later life that is linked to the lack of dopamine production especially by tremor of resting muscles, rigidity, I would and still do feel slowness of movement, impaired balance, and a shuffling gait lovingly referred to as my “Pimp Limp”.
So, as soon as I left the hospital with my first Parkinson’s diagnosis, I called my best friend/ Guardian Angel Donato DiCristino (may he R.I.P.) and gave him the bad news and he was so supportive we talked on the phone until I got home and was about to tell my family that I was diagnosed with Young-onset Parkinson’s.
I walked through the door of our row home and the lounge was full of people all staring at me as I entered my own home. My sister-in-law, older sibling, grandmother, uncle and my mother were all sitting around the table in the dining room. My mother knew I was going to seeing Neurologist and had asked me how my appointment was as soon as I stepped through the door, struggling to get the key out of the lock and bombarded with questions my head was a spin and I simply said “We needed to talk alone” and climbed the steep stairs of our townhouse as best I could.
My Mom in tow we went upstairs into my bedroom and I shared with her the diagnosis was Young-onset Parkinson’s. She looked at me, a cheesy grin appeared on her face as she started laughing and simply proclaimed ‘The Dr is wrong you cannot get Parkinson’s disease until you’re over 60 or late 50s” (my mother was a surgical nurse in Poland but tended to act like she was a doctor … she was full of shit really).
As you can imagine I was devastated that the one person that I could turn to out of my immediate family was a mockery of my feelings, the Neurologist’s opinion, and my diagnosis. She couldn’t wait to tell my news to the rest of the family as if I wasn’t hurt enough. I was ridiculed, the only time I have ever felt this way was when I was beaten and hospitalised for coming out of the closet to my so-called friends, but that’s another story for another time.
Laughing to herself she then made her way downstairs and proceeded to share with the rest my family my brother, sister-in-law, grandmother etc.. My diagnosis and made a big joke of it and everyone else followed along. I could only take so much so I stormed out the front door at the same time throwing my Parkinson’s diagnosis on the floor. I walked for hours with the feeling of betrayal from my immediate family. I have never felt so alone!
This continued for months complete denial of my diagnosis, they had turned their back on me through ignorance and misinterpretation, leaving me with little or no support from my family when I needed it most. That was until my third and final diagnosis at Jefferson Neurology with my mother present at the appointment. The Head Neurologist asked me to perform a few movement tests and observed my shuffling gait and confirmed to me and my mother that in fact, it was Young Onset Parkinson’s Disease.
My mother started to apologize to me and cry. I told her it was ok, I was just glad that she finally had accepted the fact that I had an incurable disease at the age of twenty-eight. I really didn’t care what anyone else thought about my three diagnoses as long as my mom was on the same page as I was.
As years had gone by more symptoms started to show and mom was supportive every step of the way. Even when I started using Medical Marijuana/ CBD Oil to medicate my symptoms (Which was a controversial subject because my mother put marijuana in the same category as hard drugs) and it wasn’t until she saw the positive effect it had on my tremors, dystonia, dyskinesia, etc. she embraced the therapeutic as well as the holistic power of CBD Oil and uses it herself for anxiety, pain relief, and inflammation and has become an advocate for Cannabinoid Oil since.
My battle with Parkinson’s has just begun a decade later I’m starting to feel additional symptoms, the side-effects of medication, the rigidity in my Muscles the depression, anxiety associated with the disease.
You might ask why am I choosing to share my story with you now, almost decade after my confirmed diagnosis?
That’s simple helping other’s understand the stages of progression that Parkinson patients endure, combating misleading information so that suffers and their caregivers deal with on a day to day basis.
To be continued…
“We are Fighting Parkinson’s Head On! Are You?”
Perhaps you’d like to follow my journey and my determination to beat this debilitating disease. I hope you’ve enjoyed my heartfelt story. I look forward to reading any questions and comments you might have.