My husband does so well that I really didn’t think of “off periods” as a problem. He struggles with stiffness and shuffling in the mornings, but doesn’t everyone? Then, I was speaking with someone at a recent conference, and they explained that those morning struggles are a classic example of being “off” his medications. They suggested we look at a newer intervention called “rescue meds” which deliver a small dose of Carbidopa-levodopa by inhalation. The medication gets into his bloodstream and brain faster so he is better able to move within a few minutes. I never really considered that my husband might need to be rescued before he even starts his day.

I came home from the conference excited about a possible solution to what I thought was an issue for us and shared it with my husband. He admitted that he is stiff in the mornings, then pointed out that something that takes even 10 minutes to work won’t make a difference. He told me that the reason he gets up early to take his meds and then returns to bed is so that they will have time to take effect before he finally gets up. He was appreciative of the information about the rescue drug and that I cared enough to be looking into it, but he doesn’t feel he needs it at this time.

The real issue for us was my assumption that because something bothered me, it was also a problem for him. I was reminded that, while we are sharing in this journey, he will be the one taking the lead when it comes to treating his disease until he can’t anymore. I can gather information and share it, but he gets to make the decisions as long as he is able, and I want that to be a very long time.