I love the input I get from my support network. They always have stories about medications or adaptive tools that have worked for their loved ones. I can look to them for ideas on different challenges we face and know that they will share good information. It was from this group that I learned about Rock Steady Boxing, bidets, and transfer poles, all interventions that help make our daily activities easier. I even have members reach out to me with questions from time to time and I am flattered that they think of me as a resource. I always remind them that I can only speak from our experiences and that they really should consider anything I say as a suggestion not a solution.

Our journey with PD has been full of trial and error, or maybe more accurately hit and miss. We can’t really know if a pill or adaptive device is going to be helpful until my husband actually gives it a try. It doesn’t seem fair since we are all dealing with the same illness. When someone finds a medication that helps them or provides a healthy bowel routine, it should be transferable to everyone with the diagnosis. We should be able to share our knowledge and everyone within our network would benefit. Unfortunately, the pool has to be much larger than our local group of about 30 folks with the disease for any real similarities to show.

Just as everyone with Parkinson’s looks different, the way they respond to medications and the tools they find useful are going to be different. That’s why it is helpful for me to also maintain a relationship with his medical team. If my husband’s neurologist, physical therapist or PCP has tried this intervention with other patients, they may have a better handle on whether it might be useful for us. Combining the experiences of fellow CarePartners, who know about the daily life challenges of PD, with the knowledge of professionals who have studied this disease hopefully gives us the best chance of finding good interventions. Always remembering that it’s going to be 50-50 whether it will work for my husband.