PHOTO COURTESY OF THE BERGHOFF FAMILY of doctor visits and tests failed to reveal any health issues to explain her symptoms. In 2013, she decided to retire.
“ The following year, I went to see a neuropsychologist,” Sue said.“ After two days of memory testing, the doctor said,‘ You’ re fine! Check back with me in ten years.’ But I wasn’ t fine. I was losing my words. In the middle of a conversation I’ d find myself unable to think of a word.
“ I had spent my whole life planning and organizing everything for my family, but gradually, that became more difficult. I started to lose my awareness of time passing, and some of my spatial awareness.”
A Search for Answers
Over the next two years, Sue’ s husband Chuck grew increasingly concerned about her health and well-being. He shared in her frustration at not having a diagnosis despite having seen several doctors. After years of managing the household finances, she asked him to take over the checkbook. Then she had a bad fall, and the very nature of it raised a red flag with him.
“ I had just walked into the garage and was asking Sue a question when suddenly she lost her balance,” Chuck said.“ I could tell she had absolutely no sensation that she was falling backward.”
Their next step was fortuitous. In February of 2017, they went to see Dr. Rochelle Woods at Kaiser Permanente in San José. Woods’ practice focuses on dementia and cognitive disorders, brain-behavior disorders, and psychiatric symptoms that arise in late-life. After reviewing Sue’ s medical history, Woods asked her to undergo one more test.
A Difficult Diagnosis
A PET scan of Sue’ s brain indicated that she suffers from Lewy Body Dementia( LBD), a brain disorder in which a certain protein forms abnormal clumps( Lewy bodies) on the neurons in sections of the brain that control short-term memory, language, physical movement, behavior, mood, and sleep. LBD disrupts normal brain activity and gradually destroys the neurons.
Nearly 1.5 million Americans struggle with LBD, one of the three leading causes of dementia along with Alzheimer’ s and vascular dementia. LBD is a progressive disease characterized by the gradual loss of function and self-sufficiency. Currently there is no cure.
“ Most people go through life not knowing what’ s in store for them in terms of health issues,” Sue said.“ After the diagnosis, I spent a few weeks feeling sorry for myself. Then I began praying,‘ I don’ t know how to do this, God. I need your help.’”
A Courageous Choice
“ That’ s when I realized that I had a choice of how to live with LBD. I wanted answers. I wanted to know what’ s the worst that can happen and what’ s the best I can hope for. When I talked with Chuck about wanting to tell my story, to help build awareness about LBD and help other people with LBD to find services and support, he was all for it.”
Sue and Chuck learned about the work of the Lewy Body Dementia Association( LBDA), a nonprofit dedicated to the very goals that Sue envisioned. The Berghoffs connected with LBDA leaders to learn how they could help build awareness and raise funds to support their work.
They also connected with Dr. Geoffrey Kerchner, a Neurologist and Neuroscientist and the Medical Director at Genentech, previously with Stanford Medical School’ s Center for Memory Disorders; and with Robin Riddle from the Brain Support Network in San Mateo.
According to Riddle,“ Probably the most challenging symptoms for families to cope with are psychosis( hallucinations and delusions) and fluctuating cognition( clarity followed by confusion). Our support group provides a vehicle specifically for caregivers of people living with LBD. Some are new to the role, others may have several years of experience. At our meetings, we share suggestions, resources, and empathy.”
“ Sue’ s diagnosis brought a new normal to our lives,” Chuck said.“ As her husband, my time is divided between understanding LBD and its day-to-day impact on Sue, learning how to be her primary caregiver, taking on the household responsibilities she always managed so capably, and planning for what the future may bring.”
LBD is often misdiagnosed, and the wrong treatment can be harmful. But a proper diagnosis and treatment program can help people manage the disease’ s negative impacts to achieve a better quality of life.
The Berghoffs have three adult children and 14 grandchildren. When Sue shared her situation with family, her son Bill was struck by how quickly she had adopted a mindset of making the most of the path ahead by making a difference for others.
“ Mom is demonstrating to us all that while life may bring us twists and turns, we have the ability to choose how we deal with them,” Bill said.“ She is an inspiration and role model to us all in living life to its fullest.”
Sue also shared her story with Mary Cox and others she’ s come to know through volunteering with Morgan Hill’ s American Association of University Women. They stepped up immediately to help Sue and Chuck plan a fundraising event, as did Theresa Kiernan, Jennifer Tate, Katherine Robinson, and other friends from the community.
A Community and a Cause
On September 30, 2017, the Berghoffs will host a community awareness and fundraising event at their home with food and wine, and an opportunity to learn more about LBD from Kerchner and Riddle. All proceeds from the event will be donated to LBDA and the Brain Support Network. The Berghoffs will match up to the first $ 10,000 in donations.
“ We can’ t escape the challenges,” Chuck said,“ but Sue has chosen to make each day be the best it can be, and I’ m with her every step of the way. Living with LBD has reminded us that it is the journey, not the destination, that matters. The sad times are balanced with times of joy.”
“ Lewy Body Dementia is a more common disorder than generally acknowledged, and there are no effective treatments that stop or slow the inevitable progression of cognitive deterioration, psychological distress, and loss of mobility. This disease is screaming out for attention from scientists and drug developers.”
— Dr. Geoffrey Kerchner
GILROY • MORGAN HILL • SAN MARTIN SEPTEMBER / OCTOBER 2017 gmhtoday. com
65