The Word

All who cross over into the land of the afflicted have one. A word. A sentence. A fate. Mine? Parkinson’s, the P word. It arises unbidden as I walk, my left leg not quite keeping pace with my right. It floats to top of mind when my tremor flares in a social setting, again when I realize I am not speaking loudly enough in conversation. Parkinson’s. Parkinson’s. Parkinson’s. I’m sick of it and I’m sick from it, the word and its confederates: neurological, progressive, incurable. 

I was first bestowed the word on an otherwise unremarkable day. I arrived at my initial appointment with the neurologist assuming I would receive confirmation of my primary doc’s best-guess diagnosis of an “Essential Tremor” — relatively benign. We had a brief conversation, she had me perform some dexterity tests, observed me walking up and down the hallway, then asked if I had ever acted out dreams, punching, kicking, or yelling while asleep. I had not.  

She then abruptly said, “Your symptoms are consistent with Parkinsonism.” What? What did that even mean? Was she trying to say the P word without saying it? I asked her point blank. Her answer? A slight head nod and a “Yes.” At that pivot point, everything reeled and the tectonic plates at my core shifted and fractured. I now had a word, my word, one that will loop in my misfiring neural synapses for the remainder of my days. 

I sometimes wonder what previously occupied all the psychic space now hogged by the P word? An entirely unrealistic assumption that I would always enjoy good health? A smug satisfaction that I was in better health than many of my peers? An underlying sense of physical well-being?  

All those foundational articles of belief vaporized upon my diagnosis.   

I remind myself that I am fortunate to be in the early stages of the P word and still able to do most of the things I enjoy and I am fully aware that there are many with far more daunting conditions than mine. I give myself pep talks: “Don’t be defined by your diagnosis,” and “Keep fighting,” Good advice, certainly, but alacrity and stoicism are lofty, cerebral concepts, flimsy and flaccid weapons in the face of my relentless adversary. The P word, too, is cerebral, but it does its dirty business on a deeper, more primal level, the substantia nigra, those words conjuring a devouring black hole in my cranial universe. Clint Eastwood’s admonition to “Not let the old man in,” is good in theory but the “old man” arrived unannounced and had set up shop before I even knew he was here. 

There are surgical interventions but I am told I am not yet a candidate and that I won’t be until my symptoms worsen. Finally! Something to look forward to! (Insert sarcasm emoji here.) Meanwhile, well-intentioned friends refer me to articles touting potential breakthroughs, even cures. They shimmer like cool water in the distance on my parched P word path. I can only hope they do not turn out to be to be mirages. 

How to proceed? With denial, with exercise, with deflection, with exercise, and finally, with more exercise which I am told can slow the progression of my symptoms. My gallows humor, always at the ready, is asserting itself more now that the actual gallows are in sight. I should note here that the P word is not a death sentence, rather a life sentence. I’m told I will likely die with it, not from it. 

Given that, there is good reason to think I might stick around to enjoy more springs, more summers, more falls, which have taken on a metaphoric poignancy and, yes, winters, even as I come to inhabit my own. And one day, tremors, shuffling gait, and all, I might see my 90th birthday, attend my grandchildren’s graduations, and even welcome great-grandchildren into the world. Who knows? It could happen. Maybe my new P word should be “persevere.” 

This My PD Story was originally published in The Boston Globe’s Ideas section. Bob Regan is a songwriter in Nashville, TN. 

Learn more about Living with Parkinson’s and explore Parkinson’s Foundation Resources today.  

My name is Julie, and I was diagnosed with young-onset Parkinson’s disease (YOPD) in 2018 at the age of 44. Since my diagnosis, my most prominent symptoms have been rigidity, slowness of movement, and foot dystonia.  

Part of my PD journey involves a scary hospital experience in 2023. While my daughter and I were on a cross-country road trip together I began experiencing severe dyskinesia (involuntary, erratic, writhing movements of the face, arms, legs or trunk) and cramping. This is fairly common for me, and sometimes, when this happens, I use THC (medical marijuana) to find relief.  

However, when I did this time, I became unresponsive, which had never happened before. My daughter pulled over to call 911 and an ambulance transported me to the hospital. 

The next thing I knew, I woke up in the ER. I thought I was having a bad dream. My daughter explained to the medical team that I have Parkinson’s, and like many others, use THC to help manage my symptoms.  

The ER team was convinced I was a drug addict and treated me like I had done something wrong. My daughter and I were both shocked and scared. They didn’t believe I had Parkinson’s, and they refused to perform any tests or allow me to take my Parkinson’s medications. 

Unfortunately, it took several hours to convince the medical team that my Parkinson’s medications were essential. Once they realized these weren’t street drugs, my medications were administered, and my symptoms became under control.  

The doctor neglected to contact my neurologist, and further testing was never done. I was treated carelessly and discharged the same day. When I talked with my neurologist after the hospitalization, he said that I experienced a “dystonic storm.”  

Since then, I have taken time to process this traumatic experience and learned how to advocate for myself as a person with Parkinson’s. Most recently, I underwent deep brain stimulation (DBS) surgery that changed my life — and greatly improved my symptoms.  

While we don’t always know when we are headed for a hospital stay or ER visit, there are ways to prepare. The Parkinson’s Foundation Hospital Safety Guide can help you and your loved ones prepare before your next planned or unplanned hospital visit so that you feel prepared to navigate the hospital with confidence. 

Advocate for your best care with the Hospital Safety Guide. Learn more and download the guide now. 

My name is Karen, I am 58 years old, and I was diagnosed Parkinson’s disease (PD) in 2019, right before the global Covid-19 pandemic. At the point of my diagnosis, I was experiencing advanced symptoms that were previously masked by a busy life of motherhood and exercise. I attributed many of my symptoms, such as back stiffness and shaking, to overtraining, excessive caffeine and stress. I never thought an active person like me might develop Parkinson’s. 

Upon my diagnosis, I connected with a wonderful neurologist who determined that my Parkinson’s was caused by genetics. Unfortunately, over the course of several months, I began to experience severe symptoms of dystonia (repetitive muscle twisting, spasm or cramp), falling and stiffness on the left side of my body. My Parkinson’s medications help, but to this day, I still experience severe symptoms, which can be troubling to my loved ones as my medication wears off.  

As a result of Parkinson’s disease, I have found myself in many Emergency Room (ER) situations. I am a “clock watcher” when it comes to taking my medications on time, meaning that I take them frequently, every day, at the same exact time. Dystonia and stiffness hit me with a deep and painful heaviness, which is why I must stick to a strict medication schedule.  

Last fall, my neurologist believed I was a good candidate for a new extended-release Parkinson’s medication to alleviate my worst symptoms, which I eagerly agreed to try. After taking it for the first time, I quickly realized something was not right — my throat began to close due to severe dystonia, and my speech became increasingly slurred.  

I called my neighbor for help, and they quickly called an ambulance to transport me to the ER. I brought all my old Parkinson’s medications and everything else I might need for a hospital stay. I was having a bad reaction to the new medication.  

Unfortunately, things became a fiasco when the ER did not give me my medication on time. I was admitted to the hospital for observation overnight due to low blood pressure, and the medical team refused to give me my Parkinson’s medications.  

Between the ER and Admitting, hospital error of staff and pharmacy miscommunicated my list of medications in their computer system. I had clearly provided them a list of my medications and the schedule, yet they did not enter them into their computer system correctly. The inpatient nurse locked my medications from home in a drawer. It took me multiple attempts and worsening symptoms to convince the medical team to administer my medications.  

Many medication doses were missed and then given delayed 12 hours. When I finally left the hospital, my symptoms were significantly worse than before my hospital stay. Months later, I am still recovering.  

I share my story not to frighten anyone, but to encourage people with Parkinson’s and their loved ones to advocate for themselves while in the hospital. Medical teams are not always educated on the PD or Parkinson’s medications timing and care, and this can be a scary reality when you are alone.  

Lack of awareness in the hospital setting exists for how Parkinson’s presents itself in younger people. My story is an example of not judging a book by its cover. The Parkinson’s Foundation Hospital Safety Guide is designed to equip you for your next hospital stay. 

Advocate for your best care with the Hospital Safety Guide. Learn more and download the guide now.