Several weeks ago, I was contacted by the National Parkinson Foundation (NPF) and asked to speak at their “Caring for the Long-term Caregiver Symposium.” This all-day event was sponsored by the NPF, St. Luke’s Hospital, and Johnson County Community College, and it was designed to address and discuss the difficulties and obstacles presented by long-term disabilities, not only for the patient, but for their caregivers as well. This is a topic that I have a bit of experience with and is near and dear to my heart, so I was honored and excited that they wanted me to speak for their audience. And not only did they want me to speak, but they wanted me to close the event as their final speaker of the day. Other than the keynote speaker, the final speaker is the most important part of any event, since it is what the audience will have fresh in their minds as they are leaving and is what they will remember most vividly afterwards. After speaking with the event coordinator and getting a good idea of what they were looking for, I was extremely excited to prepare a new Roll Models talk to close their symposium. After a few weeks of careful brainstorming, writing, and revising of my material, I eventually put together a brand new Roll Models talk called, “Beyond Bedside Manner: The Complex Relationships of Long-Term Care.”
“Beyond Bedside Manner” is my newest Roll Models talk, and it is probably my most well-written piece to date. The main message that I am trying to get across to my audience in this talk is that physical disabilities impact more people than just the person being diagnosed with the disease. While the patient definitely has their life effected in nearly every way imaginable, and I do not want to at all minimize that fact, the loved ones who serve as the primary caregivers for the patient have their lives forever changed as well. As the patient is trying to learn to live with a physical disability and having every aspect of their life altered by the disease, their caregivers/family members are going through their own process of having their lives changed too. With building healthy relationships between family members being extremely complicated to begin with, you can imagine how throwing everyone’s life into a state of flux, like what happens after being diagnosed with a severe disability, could make maintaining strong family relationships quite difficult. Throughout “Beyond Bedside Manner,” I discuss how this happens using some examples from my own life, and I also try to give some tools for getting over these obstacles and forging even stronger familial bonds. I believe that this is an often overlooked aspect of living with a long-term disability, and I hope that this talk can do some good and bring this important issue more into view.
The talk itself went extremely well, and the symposium was without a doubt one of the best run and most well organized events that I have ever been a part of. The event coordinator was really on top of things, all of the event staff were happy and helpful, and everyone in the audience was kind and gracious. They even managed to stay on schedule the entire day while running presentations back-to-back without any dead time, and if you have ever worked at any type of event with this many people, you know that that is nearly impossible. I felt like it took me a few minutes to get into rhythm with my talk, but once I found my groove my delivery felt very natural and smooth. They were a great audience too. They actively listened and gave me some silent feedback as we went, which means that we truly connected and makes my job so much easier. I even got to meet a few members of my audience afterwards, and the individuals I spoke with were all caring and interesting people. To sum things up, this was a great event to be a part of, and I only hope that my audience enjoyed themselves and got as much out of it as I did.
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