We cannot know where the disease will take us, but we can take the time to learn about what could happen. One of our first reads following my husband’s diagnosis was Parkinson’s for Dummies followed by the Michael J. Fox book, Always Looking Up. These were valuable resources that told us what we could perhaps expect as things progressed. Michael’s book gave us hope that PD was something we could live with and not the end of our worlds. We have since added multiple guides to PD such as the Davis Phinney Foundation’s Every Victory Counts, a manual for daily living that has given us great information as we move forward.

Books are helpful and give us a general understanding of the disease, but they cannot give us a roadmap of where my husband’s diagnosis will take us, we just have to live through it. So, we find ourselves 10 years in and still without a clue where we will end up. We recently took a detour following his DBS surgery, and are still waiting to see what our new reality will be. We know that his sense of balance has been affected, he fell yesterday for the first time since being diagnosed. While he didn’t hurt himself badly, it is concerning that balance issues may be part of his new normal.

What I do know about Parkinson’s is that I can never know it all. This disease will take us where it takes us and I just need to try to be ready and continue to bounce back whenever it knocks us down.