We had the honor of being invited to speak at Global Community Conference on Parkinson’s Disease: Beyond the Limits conference in Keystone, CO earlier this month. They had the usual keynote addresses and breakout sessions. The sessions fell under several headings. For example, Beyond Today was about research. Since the conference was being held in conjunction with a Keystone Dual Conference for Parkinson’s and Alzheimer’s, we had the benefit presentations from some of the world’s most renown researchers. In later blogs, we will discuss some of the research we learned about for it applies to LBD as well as PD.
Beyond the Pill was about non-medical treatment and Beyond the Worry was all about caregiving. In past blogs, we have already discussed non-medical treatment and I’m sure we’ll do more of that for it is the direction we see ourselves going in the next year. Sadly, the sessions about non-medical treatment we’d most like to have seen were at the same time as ours and so we didn’t learn a lot about that, at least not there.
We were in the series called Beyond the Tremors, i.e., non-motor symptoms. Besides ours, there were several other session on cognition, some taught by the above scientists. Addressing cognition so directly is a change for PD groups. They have traditionally avoided this subject or else, treated dementia as a symptom that PwPD occasionally developed towards the end of their lives.
However, we found that the old resistance of the PD community to see itself as a part of the Lewy body continuum was still there…a little less strong but still alive and well. Many had never heard of Lewy bodies, and if they had, were not aware that they caused PD as well as LBD. Of those who did know about Lewy bodies, fear was often present. One man who came to hear us put it this way, “I was afraid to attend your session. I was afraid you’d paint a dramatic picture of doom and gloom.” Another woman said, “When the doctor told me I had LBD, I felt I’d been given a life sentence.” We didn’t talk about doom and gloom or life sentences. We talked about hope and about taking charge, about a person’s power to slow down the disorder’s progress and increase one’s quality of life. The man who'd been afraid to come told us later, "I'm glad I came. It wasn't what I feared. Instead it was positive and helpful."
Yes, PD is a progressive disease that can and often does limit one’s thinking ability as well as one’s mobility. It is so easy to feel that the disorder has taken over and that neither the PwPD nor the caregiver is any longer in charge—to feel as though they are locked in a driverless train to death or worse, insanity. It’s scary, to say the least. We were there at that conference to tell families that they don’t have to feel so hopeless and helpless; that there are many things, from living a healthy, low-stress lifestyle to avoiding Lewy dangerous drugs, they can do. We talked about knowledge being power. The power, for instance to know which drugs are Lewy-safe and which may not be. You can’t stop that train, but you can slow it down so that you can enjoy the scenery and even the journey.
Our goal is to teach PD and LBD families not to let the disorder to take over but to “live until you die.” To take charge, move on and enjoy the life you have.
Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.