Parkinson's Disease

Living with Parkinson’s Disease Part 4: the “Short” PPMI Visit


My PPMI “short” visits are held at the Cleveland Clinic’s Mellen Center for Neurological Restoration (also known as the “U” building), a building I would come to know well over the next five years. After checking in at the first floor reception area I ride the elevator to the third floor where I sit in the waiting area until the study research coordinator meets me at my appointment time. We walk down the hallway and around the corner to a bright white study room. There is a rolling  desk and a few chairs, a sink and storage cabinets and a bed. A large window overlooks a nondescript view of a roof and a tree. The single spot of color in the room is a large framed poster of a peach.

After my first visit a new coordinator, Jennifer, was hired and she has remained my primary contact for the last five years. We chat throughout my visits. Jennifer is bright and happy with masses of long, thick, curly hair. She is pretty and exudes such a youthful vibrancy that I guessed her to be much younger than she is.

Each visit proceeds the same way. I sit at the rolling desk and Jenn asks me a series of questions about my physical and mental well being.  Do I sleep through the night? Can I roll over in bed? Do I need help dressing? She scribbles scores down in a three ring binder as I give my answers.

I’m given a series of tests or “brain games.” How many fruits can I name? Jenn sets a timer and off I go–“apples, pears, oranges, tangerines, grapes, strawberries, blueberries, lemons…” In my mind I see myself walking through the produce department at the grocery store. Another test asks me to list animals. In my mind I move from the grocery store to a walk at the zoo. “Giraffe, lion, tiger, bear, flamingo, parrot, buffalo, rabbit, bigfoot…” Yes, I once even got credit for bigfoot.

She asks me to repeat a list of words. Several minutes later I’m asked to repeat them again. I draw a clock. I draw a cube. I listen to a string of letters and numbers and then put them in order, letters followed by numbers in ascending order. “B-5-A-3-J” becomes “A-B-J-3-5.” The string gets longer and longer until I miss. I’m asked to count backwards from 100 by sevens. I pause. “Who can do that?” Five years later I’m an expert at counting backwards from 100.

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At some point during my visit, Dr. Fernandez, the neurologist who heads the study, arrives for my examination. He is Filipino, a small man, and one who never fails to be wearing a suit jacket or at the least, a dress shirt, and neck tie. He wears shiny shoes like my father. I can imagine him spending long minutes polishing them every evening before returning them to a closet where shirts and shoes are lined up meticulously from light to dark. In my mind, I can smell the shoe polish in the little metal containers that my father had in different shades of brown to black.

Jennifer always makes sure the doctor’s paperwork is laid out and in order before he arrives. She lays open the 3-ring-binder and places a pen on the table. It is obvious that she knows how much of a perfectionist he is. Dr. Fernandez starts each visit by asking me how I’ve been feeling. It isn’t a rhetorical question. He looks me in the eye and it’s clear that he actually cares about my physical and emotional health. He is a kind man. Soft-spoken and gentle. He is an excellent doctor. We always have a bit of a chat. He is interested in books and politics and he has a nice sense of humor.

He asks me a second set of questions judging my physical and mental capabilities. He tests my reflexes and measures my ability to make different movements. He watches as I walk back and forth across the room. He scores all my answers and results into the binder.

I think I score pretty well on the “brain gains,” counting from 100 notwithstanding. What I don’t score well on is the “smell test.” Given a little book filled with “scratch and sniff” cards, I am to identify the scent of each one. Each card has several multiple choice answers. It shouldn’t be that hard. It is.

I sit in the corner and scratch the first card. Does it smell like pizza or pineapple? Leather? Maybe. Smoke? I have no idea. I can’t begin to make a guess. Card #2 gives the same result. Even when I find a card that I can smell, I can’t identify the scent. I narrow it down to strawberry or soap. The next card I have no problem with. Natural gas. I can pick out the natural gas cards every time. But that is it. The rest are either a blank or so faint that I can’t begin to identify them.

One of the early signs of Parkinson’s Disease is a reduced sense of smell. I’m not sure when I lost my sense of smell. I don’t think it was too many years ago. I must have had a good sense at one time because I know what things should smell like. I can close my eyes and imagine the smell of lilacs as I cut a bouquet for the garden. I know the rich scent of chocolate that I should be smelling whenever I stir up and bake a pan of brownies.

By noon my time with Jennifer and Dr. Fernandez is over. I go down to the waiting room where I collect my patiently waiting husband and we are free to leave. We usually spending our afternoon having a nice lunch and doing some shopping. It’s a fun day and the $50 I am paid for this shorter, mid-year visit is an added plus. Six months later the visit will be much more involved.


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