My husband’s initial diagnosis reminded me of the difficulties my parents faced when my father had Parkinson’s and I wanted a better pathway for us. Thankfully, we have access to resources that didn’t exist thirty years ago and we went to the internet to see what was out there. We quickly learned to let go of any assumptions about what this diagnosis would mean, there was no standard profile. Even though there are some basics characteristics that lead to the diagnosis, PD impacts everyone differently and the symptoms vary widely. Lots of things could happen, we were already experiencing the tremors, what else might be coming? Some of the alternatives were scary, how would we know what to prepare for?

As we explored the possibilities, we talked openly about the possibility that my husband could be facing advanced movement disorders and cognitive challenges. We did the what if’s and discussed plans for our future. What happens if he can’t drive, what if he develops hallucinations, what happens if I can’t provide the care he needs, we had a lot of conversations and tried to make plans. It was difficult to talk about but we knew it was essential to have the conversations.  We both realized there might be a time when he wouldn’t be able to participate rationally anymore, we needed to be prepared and I needed to know what he would want.

The conversations were difficult and are ongoing, the point is that we have opened those doors. Some of the challenges we discussed, such as driving, have already come and gone, some we may never face. My husband realizes that there may come a time when I have to move beyond difficult conversations with him to make even more difficult decisions by myself and now is the best time for him to provide input. We still can’t be sure where this journey will take us so we continue to talk, we continue to plan, and then we move forward and live each day to the fullest hopefully ready for whatever tomorrow will bring.