This afternoon my husband gets to see his neurologist/movement disorder specialist. We visit in-person once a year and do a virtual visit once a year. In the beginning I went along because I wanted to learn as much as possible about his diagnosis. I quickly figured out that it is valuable for me to be there because my husband may minimize his challenges. In fact, I attend all my husband’s medical appointments including his vision and PT. I know his dental team and, while I don’t go in the room with him for those appointments, I do keep in touch with them. His entire medical team needs an honest assessment of his progress on this journey. If they don’t know about everything that is going on, they can’t recommend the best treatment plans for whatever their specialty is.

Preparing for these visits varies based on who he is seeing. Most of the time we will have a conversation about what we want to emphasize on our way to whichever doctor’s office. I jot significant things like falls on my calendar and we pull that out to review things that happened since we last saw them. When meeting with his neurologist, we often make lists so we don’t miss anything. I write a list and compare it to his so there are no surprises or difficult conversations in the doctor’s office.

The important thing to remember is that the doctors can only work with what they know. I schedule appointments at a time between meds when he is feeling strong and doesn’t get exhausted. They need to know that this may not be his typical presentation. There probably are times when my husband wishes I wasn’t there because of things I share, but it has to be done. And, if there is something I don’t have time or feel comfortable saying with him in the room, I reach out to his doctor before or after the appointment. The medical team appreciates having my perspective, my husband appreciates having a second set of ears in the room to hear instructions, and I appreciate being kept in the loop on his current treatment plans. It’s a winning process for everyone.