My husband has an appointment with his neurologist this week, so he has been preparing a list of things he wants to discuss. In the early days of his diagnosis, I went to his appointments with him simply as an observer. I wanted to hear what the doctor had to say so that I could provide the right support. It was also a good time to watch the tests she did, hear about changes she was seeing and what we thought should expect next.

As the disease progressed, I realized that my input was also needed. My husband didn’t intentionally mislead the doctor, but he was always on his best behavior at appointments. It wasn’t a coincidence that we tried to schedule appointments during his “on” time with medications. She would have him walk up and down the hall, do hand and cognitive exercises and they were okay. Then, we would come home and I would watch as he struggled to hold his sandwich or stumble getting out of a chair. She wasn’t getting a full picture and I needed to help fill in the blanks.

Before we go to his next appointment, I am going to take a moment and create my own list. It will include my observations, questions and concerns. I do plan to share my list with him, not for his approval, but so that he won’t be surprised by what he hears when we are with the doctor. It is possible that many of our concerns will be similar. There may be things I bring up that he may not like, I still think they need to be discussed.

Parkinson’s Disease has been defined as a shared diagnosis between the Person with PD and their CarePartner. If we are to share in the illness, we also need to share in the treatment plan. As the primary member of his care team, I need to have a voice in the direction that care takes. I don’t intend to override him or become his voice, but instead communicate my vision of our reality. I will be participating alongside him in the appointment with our neurologist this week.