Many of the challenges we face are difficult to discuss, things like toileting and personal grooming. How do we tell friends and family that our person with PD may need to be accompanied to the bathroom and may need assistance cleaning themselves? Or that they need to be mindful of his balance and help him out of chairs? How do I help them understand that his verbal communication has been impacted by his illness, but he is still there and needs to interact regardless of how difficult his speech may be to understand. One of our biggest issues is that my husband has difficulty walking distances or simply getting out of the house. How do I explain these things to those who have never experienced them? What help do I really need to get through the day?

Thankfully, we have a supportive group of friends within the PD network and I can tell them anything. They get it because they live it alongside me. They don’t, however, have the ability to assist me because they are so busy surviving themselves. Talking with them, however, is extremely helpful because the conversations we have helps me recognize my challenges. Once I have verbalized the challenge, it is so much easier to brainstorm solutions.

One thing that I came across recently was the idea of writing my challenges down. Defining specifically what needs to be done allows me to figure out where I really need help. I use this list to create another one, a “help wanted” list. It might include covering chores, or it might be something bigger like exercising with my husband to give me a break. Then, when I am talking with friends or family and they ask how they can help, I just pull out my list and actually ask for something tangible. Difficult conversations about challenges would become more useful and create positive outcomes. I’ll be writing my list and posting it on my phone later today, ready for when that opportunity arises.