Looking back on our early years, I was not sure what to expect after we received this diagnosis. My father was diagnosed with Parkinson’s way back when so I thought I had a clue. I was so wrong. Our journey, my husband’s presentation of the disease, has been completely different from what my father faced. What I did know, however, was how ugly it could be and we talked some about that. I had watched my parent’s struggle and wanted better for us. Thankfully, our relationship was already based on regular communication and weekly check-ins so discussing his PD was folded into those conversations.

We discussed how his tremor and stiffness might impact his driving before it became an issue, always focusing on the physical ramifications of this illness. When it came time, it was an easier decision for him to stop driving because we had talked about safety concerns and alternatives. When he needed to stop climbing ladders, cooking, using electric tools, he was open to these limitations because we had already discussed them. Safety and the restrictions of his Parkinson’s Disease were always the reasons, never personal deficiencies. He was not to blame for the challenges we were facing.

Our latest conversations are around how to make sure he is receiving the care he needs. What will happen if we reach the stage where I am not able to care for him or, heaven forbid, if being at home is not the safest option? Parkinson’s Disease brings difficult decisions for both of us. Talking about them before actually having to make them puts us on the same page. It also lets me know what he wants moving forward as well as gives me permission to make those decisions alone should that time come.