Ch.46 Lewy Body Affects Pat’s Sense of Time             We were going to meet friends at 1 pm to go to a movie. But before that Read more

Ch.45 Two Rons             “Ron, was that Lewy Body doing this to me?” Pat asked this question about 8 p.m. yesterday; it was a very good Read more

Ch.44. Two Exhausting Days: Pat Faints on Wednesday but Sings in a Concert on Thursday.             October, 2019.             I had been Read more

Ch.43. Mornings Can be Unpredictable.             I sense the unpredictability caused by Lewy Body disruptions frequently in our mornings together.                Read more

Ch.42. Who Would Take Care of Pat If I Couldn’t?             This concern has been gnawing at me ever since I received a heart stent on Read more

Ch. 41: What Ron Doesn’t Understand About Me.             [This chapter is initiated by Pat with a response from Ron]  Because I can’t drive I’ve lost the Read more

Ch.40. Pat Asks Ron How He has been Affected by Her Lewy Body.             After we discussed our last entry, Pat asked me for more details Read more

Ch.39. “The Apocalypse Arrived and Yet it was Not Apocalyptic.”             This quote comes from the novel Exit West, by Moshin Hamid. The author writes about Read more

Ch.38. What was Supposed to Bring Pride Brings Shame Instead.             Pat belongs to the Stand in the Light memory choir, as explained in chapter 40. Read more

Ch.37. Ron Makes a Serious Mistake – Then So does Pat.             I’ve been going to Eau Claire to exercise at the cardiac rehabilitation center since Read more

Ch.36. Pat Joins a Memory Choir.             August 2019. Several months ago, Pat and I attended a memory care conference in Eau Claire. We walked through Read more

Ch.35. “I Wasn’t Talking in My Sleep. I was Talking in Your Sleep.”             Four a.m.; I awake to hear Pat dialoging with some of her Read more

Ch.34. Pat Realizes She’s been Hallucinating. (Originally written Autumn, 2019. Added Update at End of Essay.)             “Ron, I want the truth. Was anyone here in the Read more

Ch.33. Pat Tells Our Book Club Members She Has Lewy Body.                   Pat and I first addressed the question of whom to tell you Read more

Ch.32. Today’s Surprise: Ron gets a Heart Stent. May 23, 2019.        About one month ago I noticed I was having breathing problems while exercising. They didn’t go away, Read more

Ch.31. “I Know You are my Husband because You are Wearing the Same Shirt.”             Awkward moment. Pat says: “I don’t think I’ve been hallucinating much, Read more

Ch.30. Some Mornings are Full of People.             This morning Pat woke up trying to speak with several people. These people had various jobs to do Read more

Ch. 29. We are “Care Partners.”         Pat and I recently attended a local conference for professionals treating dementia patients. People there were using the term “care partners” Read more

Ch.28. Blackcap Pie, Memory Loss and Confusion.             We had company yesterday morning at breakfast. I made waffles. Then the four of us took a ride Read more

Ch.27. Porch Bird Watching on the First Beautiful Spring Day of the Year.             Today, in mid-April, was the first 60 plus degree day this year Read more

Ch.26. Caregiver Meltdown.             I am writing this piece almost exactly 24 hours after I had a gigantic, ugly, scary meltdown. Things hadn’t been going well Read more

Ch.25“Keep on Trucking” but “I Won’t Regret a Thing”             Shopping today, I ran into a friend I’ll call Ellie whose husband Max is currently in Read more

Ch.24. If You Don’t Laugh, You’ll Cry.             Pat and I attended our Lewy Body group in St. Paul today. Part way through someone I’ll call Read more

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Ch.23. Adding Structure Challenges Lack of Initiative Caused by Lewy Body.             Q: “Hon, what would you like to do today?”             Read more

Ch.22. Sudden Mood Changes.             When Pat was first diagnosed with Lewy Body I asked several people this question: What is the hallmark of Lewy Body? Read more

Ch. 21    Pat and Ron Confront the Corona Virus           I am writing in early March 2020, about one month after the Corona virus emerged in Read more

Ch.20: Acceptance: Yes; Passivity: No             Pat and I recently attended the Meeting of the Minds dementia conference in St. Paul, MN. There were about 1,000 Read more

Ch.19. I’m Scared to Travel Away from Pat.             Pat and I have spent the great majority of time together since we both retired and Pat Read more

Ch. 18: Not Driving – A Blow to Your Sense of Self.             Do you remember how proud you were when you passed your driver’s test, Read more

Ch.17. Slightly Unusual Behaviors (SUBs).               Pat has never been a model of conventionality. In fact, she’s sometimes     decidedly unconventional. For example, for years Read more

 Ch.16. Depression and Lewy Body.              It’s February, 2019 in Wisconsin as I write this piece. There’s at least a foot of snow on the ground everywhere Read more

Ch.15 First Pat and then Ron Join a Memory Choir   First Pat Joins a Memory Choir.             August 2019. Several months ago, Pat and I attended a memory care Read more

Ch.14. Waking Dreams, RBD, and Sleep Deprivation.              Recently I awoke around 1 a.m. feeling chilly. Oddly, the blankets had disappeared. I heard noises from Pat’s Read more

Ch. 13. Mortality.                      Pat and I attend in St. Paul a Lewy Body group for people with Lewy Body and their Read more

Ch.12. We Are Still a Team.                     I’m writing this passage on the coldest day in decades here in rural Western Wisconsin: minus Read more

When I was young, I had difficulty learning how to tie shoelaces. Years later someone told me it takes 32 separate physical actions to tie those laces. No wonder it Read more

 Ch. 9 Questions for the New Year: 2019 and then 2020  Note: This essay was originally written in early 2019, then updated at the end of the year. 2019 A new year has just Read more

Ch.9. Physical Intimacy: Hugs and More.             My friends and family have been a wonderful support for me during these Lewy Body days. Recently I was Read more

Ch. 8.  “Showtime.”              In our book club the book of the month was The Namesake, by Jhumpa Lahiri. It is about a family that immigrates Read more

Ch.7. Who Should I Tell that I’ve Got Lewy Body? Acceptance, Embarrassment, Shame and Trust.             Do you think this is an easy question to answer? Read more

Ch. 6.  Some Days You Just Want to Cry.             Today was one of those days when everything we did was interfered with by Lewy Body. Read more

Ch. 5. The Need for Support.             If someone called me seeking advice and told me that his or her partner in life had been recently diagnosed Read more

Ch.4. Good Days. Coping with LB has made me (and Pat, I’m sure) more appreciative of the natural beauty in our Western Wisconsin homestead. Almost every day lately we’ve driven through Read more

 Ch.3: Noise.             Pat and I have been going to a Scandinavian restaurant named the Norske Nook for over 20 years with our friends Ed and Read more

            Today I reached out and poked Pat’s leg. Why? To see if she was accumulating excess fluid in her body. Unfortunately, I forgot to Read more

                        Mornings are interesting in our LB world. Pat frequently awakens in the midst of a dream world in Read more

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 Read more