We’ve visited several Parkinson’s groups this summer and just finished participating in the Parkinson’s Power Summit in Spokane. We’ve met some wonderful people and as always, learn more than we teach. Some of the things we’ve learned:
In every group we visited, there were people with slow thinking, hallucinations and other early signs of encroaching LBD. Even so, a favorite refrain in the PD community has been “dementia is a something that a few people with advanced PD occasionally get.” This is changing and more people are aware that there’s a connection between PD and LBD. Group members related with Jim’s stories of his first wife’s hallucinations and active dreams. They experience these symptoms too.
People dealing with PD are very aware that there’s more to PD than movement issues. In fact, we heard over and over that non-motor symptoms were more distressing than the motor symptoms. Hallucinations and active dreams were the ones most mentioned but others such as depression and irrational behavior were also mentioned.
On the other hand, few were aware that drug sensitivity could be a problem even for someone with only PD, and that it could become more likely as the disorder progressed. This is serious, but this symptom can sneak up on you. A person can take a drug for years successfully and then start being sensitive to it. PD drugs are very good examples of this. When a person with PD starts hallucinating, the first think a doctor will do is change the PD drugs that the person has been taking. Other once useful drugs, such as over-the-counter cold and allergy medications can also become troublesome.
PD families are well aware of the value of alternative therapies for management of motor symptoms but less aware of how useful they can be for mood, stress and anxiety management. We heard people discussing drugs they used for these symptoms, but very little about non-drug alternatives. A few did use massage and aromatherapy and Power Summit Conference attendees were very interested in a lecture on using essential oils to deal with these issues and more.
Next week, we will be attending another big conference—and then we will start wending our way back to Arizona.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia
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.
Very interesting blog this month. I attended a PD support group and was treated as though my husband did not have PD because he had LBD. Those in the group had never heard of Lewy Body and I did not feel part of the group because no one there had LBD. iT seemed like the PD community did not own Lewy Body nor do they recognize that most PD patients do become demented. Can u explain?
ReplyDeleteGreat question. The short answer is that no one wants to think that their motor disorder is going to advance into a cognitive disorder. Thus, it is easier to see you and your loved one as “different” from them. See next week’s blog for the longer answer.
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