Parkinson’s Disease, Defined


Parkinson’s Disease is discussed mostly in the media — it is on the news amid stem cell research debates; it is occasionally mentioned when an elderly celebrity has been diagnosed; the grandfather on an afternoon soap opera may have the illness. Parkinson’s is a name mixed in with all those other diseases; it is rare in that it afflicts a mere 3% of the population over the age of 65. A medical textbook will describe it as a degenerative brain disease affecting the central nervous system; it will discuss motor skill impairment and speech problems; it will mention tremors, dementia, akinesia, dopamine regulation, the basal ganglia, and other terms that will give you a headache and leave you tongue-tied.

Parkinson’s Disease is much more than what those books imply.

Parkinson’s Disease is when you help your father move across town and his hands are shaking. You furrow your brow, you try to think of other things, like his new apartment and arranging his furniture. Your friend who volunteered to help turns to you and calmly, supportively whispers, “I think I know why he’s shaking … early signs of Parkinson’s.”  You think he is arrogant; he’s only 18, he knows nothing, just because his grandfather has the disease doesn’t mean he knows anything. His grandfather is well into his 80s, your dad is only 60. Impossible. “Since when is he an expert?” you think to yourself, helping your father lift a box labeled, ‘Fragile.’ Parkinson’s Disease is three years of denial until finally, your friend’s premature diagnosis is confirmed.

Parkinson’s Disease is the first hospital visit to the geriatric ward. It is the undergraduate nursing student doing her clinical asking your father if he recognizes you, if he knows your name. “Of course he knows my name,” you think, as he simultaneously verbalizes these thoughts. It is not possible that he will ever forget. You’re his daughter, and no disease can change that. Parkinson’s Disease is explaining to people that when you say your dad is in the hospital, it is not as urgent of a statement as it should be, rather, it has become fairly normal, almost routine.

Parkinson’s Disease is the first time you see your father cry, the first time you realize that your once ever-strong “Dada” has an emotional side to him. It is the first time he weeps over missing you, over life struggles, and not over something “serious,” like pain or a death in the immediate family.

Parkinson’s Disease is trips in and out of putrid nursing homes and rehabilitation centers with meals that are more appropriate for airline passengers, not sick patients. It is rude employees who put on their happy face when you’re in the room, but reveal their true bitter and cynical selves when visiting hours are over. It is asking the management why the patient next door who sleeps all day has a working television and your father, whose only source of entertainment is the nightly news and Red Sox games, does not.

Parkinson’s Disease is when your father weighs less than you do, when his crippling bone structure leaves him shorter than your petite 5’ 3” frame. It is when he can no longer drive, no longer walk, no longer support himself. It is when you pray to God that he doesn’t slip in the snow on the walk to the car because you’re the one supporting his fragile frame with your less-than-muscular arms.

Parkinson’s Disease is having to remind your father at least once every ten minutes that you do not speak Spanish because he so often slips into his native tongue when asking you for help. Parkinson’s Disease is patience, it is trying to hold back the urge to yell at him because it’s been two hours and you’ve told him at least seventeen times that you don’t know Spanish but he keeps forgetting. It is desperately trying to find the time to learn more Spanish so you no longer have this dilemma.

Parkinson’s Disease is a part-time aide taking over his living room, chatting on her cell phone while he watches TV. It is the transition to a full-time aide after countless tumbles and injuries, subsequent stays in a nursing home, and the medical decision that he cannot be left alone because it is too dangerous. Parkinson’s Disease is yelling at the aides for being neglectful and disrespectful, but not getting through to them because they do not speak English and you do not speak much Spanish. It is writing a contract between your father and the aide and having your father translate the English to Spanish so that she will understand that she needs to be timely, she needs to give two weeks notice if she wants to leave, and she needs to answer her phone when he calls and needs immediate medical assistance.

Parkinson’s Disease is a rainbow colored collection of pills with names you cannot pronounce and side effects you cannot bear to think about. It is morning meds, mid-morning meds, lunchtime meds, afternoon meds, dinner meds, and bedtime meds.

Parkinson’s Disease is when Alzheimer’s jokes are no longer funny, when you hear snide remarks about dementia and memory loss and no longer crack a smile; it’s too close to home. Parkinson’s Disease is countless fights with your father when you try to explain that you do check in on him, you do visit every other week, he just doesn’t remember. Parkinson’s Disease is not knowing how often you should point out his memory lapses, because it hurts him but helps your explanation when he cries into the phone saying that if you cared, you would call. You do call. You call every day.

Parkinson’s Disease is staying on Cape Cod with your boyfriend for your anniversary and crying yourself to sleep despite the momentous occasion because your father is upset that you had free time and spent it with anyone other than him. It is becoming that fragile, emotional girl who cries all the time. It is, two years later, staying with your boyfriend’s family for Easter and crying within thirty minutes of your arrival because again, your father is upset that you used your free weekend to spend time with anybody else. It is when he thinks you are constantly doing homework because he doesn’t want to believe that his little girl has grown up and likes to socialize with friends, so you simply lie about your schedule.

Parkinson’s Disease is listening to your father cry about missing his old life, his old self, explaining to you that he didn’t ask for this, begging for some nonexistent justification, crying about how good he was his whole life: “I never abused alcohol, I never did drugs, I used to smoke but I was never an addict.”  It is when he lectures to your friends to “never get sick.”

Parkinson’s Disease is when the person in front of you at Target buys Depends, and you no longer snicker thinking about grown men wearing diapers. It is asking a hostess to wait outside the women’s room at restaurants to explain to everyone who tries to go in that your father is using the bathroom and he needs your assistance so it will be a couple of minutes. Parkinson’s Disease is seeing body parts of your father you never wanted to see. Parkinson’s Disease is, eventually, watching him empty his bladder into a bedpan.

Parkinson’s Disease is when he says to you, “I bet you never thought you’d have to take care of your father.” It is helping him with the ten-minute process of putting on pants, a belt, and shoes. It is feeding him coffee like he fed you milk when you were a baby. It is biting your tongue when you think two large coffees a day is too much and probably not good for his trembling hands, because you know coffee is one of the few things in life that still brings him some small degree of joy.

Parkinson’s Disease is when a self-made Peruvian immigrant with a strong build turns into a bed-ridden frail cripple who has been in bed for four days straight. It is when the life is sucked out of him, when your bimonthly visits are the highlight of his life, when you have nothing left to say and can never ask him how he is because his answer is always the same. Parkinson’s Disease is when his smile melts your heart because it is so rare, and when it comes out, it is the most genuine, beautiful thing you have ever seen.

Parkinson’s Disease is finally, after five years of arguments, guilt, and countless tears, understanding that he did not choose this illness. This illness chose him.

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image – Shane Fox