I have had Lewy Body Dementia, or LBD, since 2007. The prognosis is 2 to 20 years—“Fast Lewy” or “Slow Lewy.” I have Slow Lewy, as I head into year 16 with the second most common form of dementia that hardly anyone, including doctors, has ever heard of. Lewy Body Dementia. And to complicate matters more, no two “Lewys” are ever the same. Ken had frequent hallucinations; I’ve had only a few so far. I have Slow Lewy. Julie, the loving, tender, dedicated wife, is so true when she said she felt as though LBD was worse than Alzheimer’s. It is. As a patient myself, I completely agree. It’s been said by neuroscientists/neurologists as the worst form of dementia. Besides the unique & utterly horrifying swirling mental vortex of torture and torment that goes on daily, which is impossible to describe (1.5 decades so far in my case), the medication, surgical, anesthesia, and even food prohibitions make this dementia so very difficult to live with. I need bilateral hip replacement but can’t ever have general anesthesia—not even “twilight” anesthesia—it’s a big no-no because all anesthesia is dangerously neurotoxic. Meanwhile the crunching bone on bone pain of destroyed hips makes me cry and scream with pain. But the chance of being launched years ahead, by the anesthesia, to end stage LBD, is enormous, as well as the extremely high risk of never waking up at all, and remaining in a persistent vegetative state. Or, perhaps you do wake up, but abruptly die just a few weeks later. If I suddenly have appendicitis, what choices do I have? It’s a lose-lose situation. How often do I wish that my dementia were merely Alzheimer’s—they can take antibiotics without worrying about Serotonin Syndrome, Akathisia, all causing more permanent brain damage, or Neuroleptic Malignant Hyperthermia (the brain fries within minutes from out of control high fever). They can have dental work with a sedative for procedures like tooth removal or root canals, etc. They can get their hips replaced, their torn meniscus repaired…but not Lewys. I’m down to 4 antibiotics that I can take, but they still cause so many problems, and two of them are administered only by IV. The frequent UTIs & subsequent antibiotic treatments throw me into a maze of angst, confusion, Akathisia, anger, crying jags due to the “Pseudo Bulbar Effect,” heightened disorientation, exhaustion, even brain inflammation (encephalitis), and much more—all of it lasting for weeks. I had to have a deep thigh muscle biopsy, a surgical procedure, but no anesthesia, not even Ibuprofen (Ibuprofen is neurotoxic). Surgery was 40 minutes of cutting & snipping and cauterizing deep into my thigh to extract pieces of deep thigh muscle for biopsy for Polymyositis. I endured surgery with nothing but the table to grip onto. Path results were positive for both the incredibly painful muscle disease of Polymyositis-but also Dermatomyositis. This is THE book to read for all caregivers, family members, loved ones, anyone really, and especially the patient, if possible. My eyes have difficulty following the lines of books, so I’m especially grateful for the audio edition. No one could ever put to words as eloquently, as honestly, as tenderly, as poetically, as Julie Sobel has in her memoir, Love and Forgetting. An accomplished, published writer, and artist, she lovingly describes all aspects of living with her husband Ken as they both struggle to live with his diagnosis of LBD. Ken, an acclaimed writer, producer of children’s TV shows for Canadian TV, an historian, a published author, in addition to many other talents, he co-authored with Julie two volumes on the history of their unique area-the country-side surrounding Toronto. Julie lovingly leads us from Ken’s pre-diagnosis days, to finally being diagnosed, and through all the subsequent aspects, issues, difficulties, emergencies, 911 calls, hallucinations, horrors, sleepless nights, the poignant shared memories & special moments, as they go through this horrific journey together. (Tissues will be needed.) For me, as a patient who suffers daily with all aspects of this horrific disease, and having searched a long time for a personal account of what it’s been like for someone else going through this dementia called Lewy Body, nothing will ever surpass Julie Sobel’s story of her life with her dear husband Ken, as together they endure the nightmare of LBD. Now I truly know what lies ahead for me as I get closer and closer to end stage. It’s a horrifying way to end one’s Earthly Journey. I’m not afraid of dying. I’ve been preparing myself for death for 1.5 decades. It’s the unrelenting and slow progression of the disease, the seemingly daily losses that I have to accept, that my husband/caregiver has to accept—we’ll never grow old dancing together in the kitchen at night, hiking up a mountain to watch the sunset, walking hand in hand through a forest trail, watching ocean waves rush over our toes in the sand…I’m already mostly bed-ridden, haven’t been able to walk for years, sometimes I don’t know where I am, or who I am. Really, I already died a long time ago.