Introduction to the Lewy Body dialogue

The Dialogue.

      Pat Potter-Efron was diagnosed with Lewy Body dementia in April, 2018. Since October, 2018 we have been keeping a shared journal that we call the Lewy Body Dialogue. In it we write about our experiences on topics like hallucinations, emotional fluctuation, the need for family support, and self-esteem challenges. First I write my thoughts and then Pat adds hers. Sometimes we think alike but oftentimes Pat's view of a topic such as her having hallucinations is very different than my observations of them from the outside.

     We believe this dialogue will be valuable to others who have been diagnosed with Lewy Body (and other dementias), their friends and family members who are their care partners, professionals who want better to understand what Lewy Body feels like, and to the general public.

      We will publish one new dialogue each week from our journal. We will keep previously printed dialogues in the "Last Week's Chapter" and "Previous Chapters" pages.We hope eventually to print an entire book of our first 50 dialogues. 

What Causes Lewy Body Dementia?

    Lewy Body dementia is the second most common form of dementia. Although tens of thousands of men and women have been diagnosed with this disorder few people become aware of it until someone in their immediate circle becomes affected. Lewy Bodies are tiny black spots that develop in brain neurons as an important protein, alphasynuclein, fails to be cleared out of the neurons and forms tangles that disrupt the neurons' ability to communicate with each other. These are the same bodies that cause Parkinson's Disease. In fact, most people with Lewy Body dementia have "Parkinsonism" traits while patients with Parkinson Disease often develop Lewy Body symptoms.

Lewy Body Dementia symptoms.

     The American Lewy Body Association lists seven primary symptoms of Lewy Body Dementia:

    1) Hallucinations.

   2) Delusions: strongly held but inaccurate beliefs, up to and including paranoia.

   3)  Agitation: emotional or physical restlessness.

   4)  Anxiety: intense apprehension, uncertainty, fear of a threatening event or situation.

   5)  Depression: sadness or despondency.

   6) Aggression: verbal and/or physical.

   7) Apathy: Lack of interest or concern about matters that had been significant.

 We are Care Partners.

     Pat and I are care partners. That means we are in this thing together. Lewy body dementia is not Pat's problem. It's not my problem. It is our problem. Pat is not only a care receiver; I am not solely a care giver; we care for and with each other.

     We hope you will enjoy and benefit from our dialogue. Even more so, we hope it will help some of you feel hopeful that even though Lewy Body Dementia has entered your life you can still have meaningful, creative, and useful lives as individuals and partners.


How We Created this Dialogue.

     Each chapter of this dialogue reflects actual situations that have occurred during about a twenty month period in 2018-2020. They are presented in the order in which they were written. There is, of course, some repetition as certain concerns, such as handling hallucinations, developed several times, although we may have dealt with these situations differently each time they came around. 

     Ron took initial responsibility to present that day's topic. He wrote mostly about his concerns, but also about times when he was optimistic or joyful even in the presence of Lewy Body symptoms. Pat then read his input and responded. At first she typed her own material, but gradually Pat became unable to work in that fashion. Eventually we agreed that Pat would dictate her responses directly to Ron. Note that Ron typed her thoughts exactly as she spoke them. We have chosen to leave her statements that way rather than editing them. We believe readers will get a better sense of how Lewy Body affects a person's thinking that way. 

     This dialogue is personal and unique. However, the situations we deal with here are the same ones our friends in the various support groups we attend regularly encounter. We believe those of you who are going through Lewy Body dementia will see yourselves and the people you love in our discussions. 

A Note on our Choice of Language.

     We commonly use the term "Lewy Body" in this journal. We came to use it as a way to deal with our objections to two other choices, namely "Lewy Body Dementia" and "Lewy." Pat did not like always saying "dementia" because it seemed to label her as defective; Ron disliked the term "Lewy" (which is frequently used in care-partner communities) because it seemed to make this terrible disease seem all too casual and almost friendly. So "Lewy Body" became the default option and one we've grown to accept and appreciate over this last year.