Visiting Parkinson's Support Groups

We’ve been visiting Parkinson’s groups this summer and talking about our book—about the cognitive aspects of PD. Many of the issues in these groups are very similar to those in the LBD support groups that we’ve attended in the past. But some are different.

• Few have heard of Lewy bodies or know that they cause PD. They are more likely to be aware of the belief that toxins, such as insecticides or Agent Orange, cause it (actually, cause the Lewy bodies that cause the PD).
• Few have heard Parkinson’s called a Lewy body disorder, but most have heard of—or experienced—Active Dreams, another LB disorder and know that the two often appear together.
• Most know that dementia is a symptom of Parkinson’s. They are becoming aware that it is more common than once thought. Most know there is some relation between this type of dementia and LBD. Some even know that it is the same thing. In fact, some aren’t aware that about half the time, LBD does not start with mobility problems but with cognition problems and is called Dementia with Lewy Bodies.
• Most are aware that hallucinations are a symptom of PD, but few recognize them as a symptom heralding dementia. (With PD, hallucinations often start with the person being quite aware that what they are seeing or hearing is not real. Then within three years, the person will not be able to tell whether the hallucinations are real or not. This thinking inability is considered to be a start of dementia—or at least mild cognitive impairment.)
• Most understand that Lewy body disorders are degenerative diseases with no known cure. However, they are very receptive to ideas about alternative therapies that can slow down its progress. They already use many to slow down the physical degeneration and maintain mobility.
• Most are very aware of how important exercise is and most have some sort of exercise program. Although they may not have considered that exercise is equally important for cognitive health, the idea makes perfect sense to them. One member said, “Good health is good health. It makes sense that what works for one part of the body will usually help other parts.”
• Most are also aware of how important diet and sleep are. They seem to have thought less about the value of sociability or mental stimulation but were receptive to the idea. They were also less knowledgeable about the need for stress management but again, easily saw how decreasing stress increased the bodies resources for handling the disorder.
• Perhaps the most alarming for us was that few group members were aware of the way Lewy bodies could cause a severe sensitivity to certain drugs. Some had experienced this and had been alerted. Some commented that their physician had decreased their PD medicine after they had experienced symptoms such as hallucinations. One caregiver wondered about the connection to her husband’s drugs and his recent extreme sleepiness. They all wanted to know which drugs to watch out for. You can find three lists of these drugs on the LBD Resources page of LBDtools.com. Scroll down to Needed Documents/Forms.

We really enjoyed our visits because the group members always had lots of questions and they taught us lots too. We hope to visit many more.

Learn more about how PD and LBD relate from our books:
A Caregiver's Guide to Lewy Body Dementia
Managing the Cognitive Issues in Parkinson's and Other Lewy Body Disorders