We are on the road again and so posting may be erratic…whenever we can find a wifi connection strong enough for uploading. This year, the last part of our journey will include a stop at the World Parkinson’s Congress in late September, in Portland Oregon. I'm sure I'll be blogging more about that later in the summer. Our books will all be on display there. It should be quite a show and so I hope many of our readers come out. If you see us, do stop and say hi!
Traveling with an RV is sort of like living with someone with LBD…you never know what the next crisis will be. Sometimes things just go fine and then they don’t. With both LBD and the RV, good, knowledgeable care can make the problems less. But many times, the problems happen anyway. We are already having troubles with George ( our 2008 Georgetown Class A motorhome). We will be stopping in Spokane where we bought him to either have him repaired or trade him in for a different one. That’s one of the differences between motorhomes and LBD. You don’t get to trade it in…you are stuck with it and the problems it causes. We hope that isn’t the case for us with George. He has acted out one too many times!
We just finished a visit in California with Jim’s daughter, Jacquie. When she reminisced about her mom, Annie, whom we write about quite a lot, she had a question that we couldn’t answer. Annie loved the sun. This was during the time when tanning was the thing to do and she always stayed very tan. She loved to lay out in the sun as much as she could. Jacquie wonders if that could have had anything to do with causing her LBD symptoms. Neither Jim nor I know of anything that would support her hypothesis, but I thought I’d throw it out for people to discuss.
My idea was that her obsession with the sun might be LBD caused, rather than the other was around. I know that people with dementia definitely become obsessed with a behavior or idea and act on it to excess. Annie was obsessed by tanning long before she had memory problems, but she was already having periods of irrational anger, and so her thinking processes were probably being affected. That’s what LBD often does: it messes with the thinking processes even before you are aware there is a problem! Then, if the thinking is messed up, obsessions can happen early on, often before memory loss. What do you think? Do you know of any research that supports Jacquie’s or my thoughts? Or negates them?
Jacquie isn’t alone. Family members often see some behavior that’s excessive or different from the norm and wonder, “Could that be why, or at least connected?” What about your loved ones? What behavior have you seen that made you ask such questions? What have you found out about it? Feel free to write comments, get a conversation going, even.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy BodyDementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.