Parkinson's Disease

Life with Parkinson’s Disease Part 6: PPMI Appreciation Dinner

Near the end of every summer, an invitation arrives in my mailbox. It’s my reward for completing another year of the PPMI clinical trial at the Cleveland Clinic – an appreciation dinner hosted by the Cleveland Clinic and the Michael J Fox Foundation.

It has been held annually at the Cleveland Racquet Club. It’s a beautiful facility. There are always lovely flowers growing around the parking lot and at the entry. Jennifer, the study coordinator, is there to greet us. My husband and I are given name tags along with a few other goodies like memo pads and pens. There is also a handout detailing all of the most recent study results.

We enter the banquet room filled with large round tables that are beautifully set with white linens. At one end of the room an open bar serves us a selection of wines and other beverages.

John and I choose a table where we will have a good view of the podium that is set up in the center of the room. The bartender pours us glasses of wine. Waiters come around offering us hors d’oeuvres— potato skins stuffed with cheeses and bacon, small quiches, tasty meat balls – the  selection is different each year but they are always elegant and delicious and worth arriving early for.

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As guests arrive our table begins to fill. It’s always interesting to meet the other guests. This year we are joined by some young clinical trial workers. They work behind the scenes and I’ve not met them before. One woman is a Canadian recently employed at the clinic. A second who works in radiology is accompanied by her fiance, a grad student studying nutrition. Their wedding is only a few days away. We are also joined by other trial participants. A couple across the table chat the evening away. When the husband speaks, his voice is low, a typical sign of Parkinson’s. I am struck most , however, by his smile. He has bright, happy eyes and he never stops smiling.

The dinner is always very special. I have salmon and chicken, both cooked to perfection and accompanied by the tastiest sauces ever. The sides are delicious. I give John my asparagus which I hate but he loves and I eat his green beans. Each year the dinner seems to top the previous one. They are the best catered meals I’ve ever eaten.

The timing is a problem for me. 6 – 8 PM is not a time of day I normally leave the house. Medication causes me to doze off without warning and those early evening hours are the hardest for me to get through. I have to plan ahead and make sure to nap in the afternoon. Even that is not a guarantee that I won’t fall asleep at the dinner table.

Midway through dinner the speeches begin. Doctors Fernandez and Levinson talk through the main course and continue through coffee and dessert with a Q & A session. I find everything they are discussing interesting and entertaining and yet I feel myself shutting down despite everything I do to fight it. It’s interesting to hear the latest details about what has been happening with the trial around the world. It gives me a sense of accomplishment and shows me why participating really is a worthwhile endeavor. But I worry that I’m going to fall off my chair or knock over my wine. Nothing is more embarrassing than falling asleep in public. I bite my lip and hope the pain will keep me awake. I pour a glass of water and slowly keep drinking. My husband squeezes my hand. He senses my struggle. As a last resort I have no choice but to get up from the table and head to the ladies room. I sit in a stall and shut my eyes. Ten minutes. That’s all I need is ten minutes…. I hate missing the end of the discussion. In the car, as my husband drives, I sleep all the way home.

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