Being a CarePartner is a very special role and, in my opinion, is reserved for that person who lives daily with someone who has Parkinson’s Disease and shares in the ramifications of the illness. It truly is a shared diagnosis. I don’t want to minimize the role other people play in our journey, it’s just that they cannot understand the extent that PD has become a part of us and what that all means. Our children and friends know about the disease, no one is living it fully as we are. While it is true they all love someone with Parkinson’s, they are not CarePartners.

The actual role of PD CarePartner is extremely unique for each person based on their situation. The level of care that my husband needs can vary greatly from day to day and has changed following his Deep Brain Stimulation surgery. Where we were dealing with heavy tremors before, he now has balance and speech issues. It is interesting to compare notes with others on how they interact with their person with Parkinson’s because, while there are some similarities, we are also facing many different challenges.

Just as we cannot know what the future holds for our Person with Parkinson’s, we cannot know what may be asked of us as their disease progresses. No one has the right to make difficult decisions about my husband’s care except for the two of us and no one should judge me based on any of those decisions I have to make. Our journey with PD is unpredictable, it will take us where it wants and I hope I am able to keep up.