My husband’s Primary Care Physician sees him once a year, his neurologist/movement disorder specialist twice. He sees all the others only when something goes wrong, not on a continuing maintenance schedule. How on earth can people who spend less than an hour with him annually ever hope to know what is truly happening in his life? I need to remind myself that while they are medical experts and should have more knowledge about his physical state, I am the one observing him daily which makes me the expert on how things actually are progressing in his diagnosis.

I have been going to medical appointments with him since we learned he has PD. We have seen multiple Primary Care Doctors, Neurologists, Physical, Occupational and Speech Therapists. I am the only constant on his team. They give him the same tests every time we visit, he’s had them so many times he has them memorized. He is usually on his best behavior at all appointments which doesn’t necessarily give any of them a clear picture of where he is in his journey. Thank goodness I am there to share my perspective and let them know what we are truly experiencing.

Along with attending appointments, I talk with friends in our PD network about things they might have heard of that could be helpful. I stay up on research so I can approach his medical team with questions regarding alternatives. I don’t worry about embarrassing him, I am honest with his doctors, because if they don’t know what I know about his condition they cannot properly treat his progression. It has taken a while, but openness with the medical members of his team has allowed me to gain their respect. Most of them are willing to listen to what I am saying, something that will only become more important as we move forward in my husband’s journey with PD. After all, I am the expert on his daily living experience which really makes me the most valuable member of his team.