A Parkinson’s patient for over 15 years, my husband has been treated at the Movement Disorders Center at UF/Shands in Gainesville for approximately two years. He was recently recruited to participate in a research study to test Parkinson’s specific effects of a drug which is usually prescribed for memory issues related to Altzheimer’s and other forms of dementia. After a brief conversation with one of the principal investigators in March and a subsequent telephone interview to verify willingness to participate, we scheduled an appointment for early this afternoon (May 8th) and confirmed that my daughter would be available to provide transportation. We were told that the appointment would last for approximately two hours.
Nervous and unable to sleep, my husband moved around the house and flitted in and out of the bedroom for hours last night. I dozed briefly during this time but finally accepted that actually sleeping for any prolonged period was a losing battle. As a result both he and I were awake, dressed, and waiting long before daylight.
I spoke with my daughter by cell phone shortly after 6 AM while she was in the process of transporting her three teenagers to their respective bus stops. During the conversation she explained that she was planning to head our way as soon as the last bus arrived rather than returning home with her two year old and struggling to put him back in the car seat an hour later. Since this plan would put us in Gainesville almost two hours early, we decided to stop for breakfast at a restaurant that we had enjoyed on a previous trip.
Even after a leisurely breakfast and a few minutes repairing hair and makeup, we checked in at the appointment desk approximately 45 minutes early for our 12:00 noon appointment. Fully expecting to wait, we sat down to chat and were somewhat surprised when the nurse approached. As she had done on our last visit, the nurse introduced herself by name and explained that the doctor was busy with another patient. She was concerned that there had been some miscommunication regarding the appointment time and she seemed relieved when we confirmed that we had purposely arrived early.
My husband’s name was called within a minute of his appointment time and the doctor spent the next two hours explaining the study and completing a neurological exam. The purpose of this study is to determine whether the specific medication being tested is helpful in treating the dyskinesia (over movement) that is caused by the drug used to treat Parkinson’s Disease (Levadopa). All study related medication, examinations and other services will be provided by the University with our only out only out of pocket expenses being those related to the additional trips to Gainesville. (This usually consists of several restaurant meals, parking fees, and a tank of gas for my daughter’s van).
Although my husband experiences some dyskinesia almost everyday, on this particular day his over movement was especially pronounced and was probably exacerbated by stress and lack of sleep. Not surprisingly his level of anxiety and negativity was also elevated for the rest of the day.
Despite the fact that we were all exceedingly tired, we took my daughter out for a nice Italian dinner before returning home to an empty house and a very confused kitten. Poor Cuddles probably didn’t know what to think since I’m almost never gone for more than an hour or two. As soon as I sat down, he jumped in my lap and settled in for a long visit.