My husband and I watched a webinar on chronic pain and PD yesterday. They specifically talked about lower back pain; it seems that my husband is part of the 80% of People with Parkinson’s who have this complaint. What frustrates me is that many of the things they were recommending were things I had suggested to my husband, suggestions I felt he was ignoring. Now, because he hears about them on a Parkinson’s Foundation program, they are great ideas and worth trying. It was as if he had never heard of these interventions before. Rather than get upset, I simply turned to him and said, “Wow, too bad we didn’t think of these sooner.” He knew what I meant, and we both had a good laugh.

Some of the things that I find frustrating are within his control but many are not. For example, I get frustrated when he needs assistance but won’t take it and also when he needs to be doing something for himself and asks for help instead. I forget that he has good and bad days and his capabilities fluctuate. There are pieces of this disease that can be extremely frustrating for me, the slowness, the stiffness, the soft and muffled speech, the poor posture, all things he can’t help. I hear myself encouraging him to stand up, speak up, slow down and walk with purpose in an attempt to be helpful but I realize he must feel frustrated too.

Probably the most difficult thing about this whole situation is the fact that it is chronic. At this point there are no magic cures and we have accepted there may not be in our lifetime. It frustrates me terribly that no matter how hard we work, and my husband is working very hard to fight this diagnosis, we are not going to win. Parkinson’s Disease will most likely be with us until the day he dies. In the meantime, I am thankful that he is here with me and I will remember to use laughter, not anger, to deal with my frustration while we work together to make every day matter.