gmhTODAY 16 gmhToday Sept Oct 2017 - Page 65

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
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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 every- thing 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 raise ɕݥѠ+q$Ё݅ѼѡɅ݅́ͭMՔ)ՕѥݡՑ͡Ёȁt Սͅ+q$ձѕ͡ͽѕ䁹͕ͅѥѡЁ݅͡)݅ɐt)QȁЁѕ݅́եѽ̸%Յ䁽ܰѡ)ݕЁѼ͕ȸI]́Ё-͕ȁAɵє)M)]ϊdɅѥ͕́ѥѥٔ)ͽɑ̰Ʌ٥ȁͽɑ̰卡ɥѽ)ѡЁɥ͔є ѕȁɕ٥ݥM՗éѽ)]́ͭȁѼչɝɔѕи)ձЁͥ)AP͍M՗éɅѕѡЁ͡ՙ́ɽ1) ѥ1 Ʌͽɑȁݡх)ɽѕɵ́ɵյ̀1䁉̤ѡɽ́)͕ѥ́ѡɅѡЁɽ͡еѕɴ䰁Յ)ٕͥа٥Ȱͱ1 )ɵɅѥ٥䁅ɅՅ䁑ɽ́ѡɽ̸)9ɱĸԁɥ́՝ݥѠ1 ѡ)ѡɕ͕́ѥݥѠ顕ˊé)م͍ձȁѥ1 ́ɽɕ͕͔ͥٔɅѕɥ镐)ѡɅՅ́չѥ͕ՙ丁 ɕѱ)ѡɔ́ɔ+q5Ёѡɽ՝Ёݥݡӊéѽɔ)ѡѕɵ́ѠՕ̳tMՔͅqѕȁѡ̰ͥ$)Ё܁ݕ́ͽ䁙ȁ͕Q$Ʌ)a$eЁ܁܁Ѽѡ̰$ȁgt) Ʌ́ +qQӊéݡ$ɕ镐ѡЁ$܁ѼٔݥѠ)1 $݅ѕݕ̸$݅ѕѼ܁ݡӊéѡݽ)ѡЁݡӊéѡЁ$ȸ]$)хݥѠ ՍЁ݅ѥѼѕѽ䰁Ѽե)݅ɕ́Ё1 ѡȁݥѠ1 Ѽ)͕٥́а݅́ȁлt)MՔ ՍɹЁѡݽɬѡ1 )ѥͽѥ1 ɽЁѕѼѡ)ٕ䁝́ѡЁMՔ٥ͥQ ɝ́ѕݥѠ)1 ́Ѽɸ܁ѡ䁍ձե݅ɕ)%1I=d5=I8!%10M85IQ%8)Ʌ͔չ́ѼЁѡȁݽɬ)Q䁅ͼѕݥѠȸɕ-ɍȰ)9ɽЁ9ɽ͍ѥЁѡ5ɕѽȁ)ѕɕ٥ͱݥѠMхɐ5Mé ѕ)ȁ5ͽɑ쁅ݥѠIIɽѡ Ʌ)MЁ9ݽɬM5ѕ)ɑѼIqAɽѡЁ)ѽ́ȁ́ѼݥѠɔ卡ͥ̀Սѥ́)̤ͥՍՅѥѥɥ䁙ݕ䁍)ͥ =ȁЁɽɽ٥ٕ́䁙)ɕٕ́٥ݥѠ1  Mɔ܁Ѽѡɽ)ѡ́䁡͕ٕٔɅ啅́ɥЁȁѥ̰)ݔ͡ɔ՝ѥ̰ɕͽɍ̰ѡ今t+qM՗éͥ́ɽ՝Ё܁ɵѼȁٕ̳t Ս)ͅq́ȁ͉ѥ́٥ݕչȴ)х1 ́Ѽ䁥ЁMՔɹ)܁Ѽȁɥ䁍ɕٕȰхѡ͕)ɕͥѥ́݅́͡ͼ䰁)ȁݡЁѡɔ䁉ɥt)1 ́ѕ͕͑ѡɽɕѵЁ)ɵհ Ёɽȁͥ́ɕѵЁɽɅ)ѡ͕͗éѥٔ́Ѽٔ)ѕȁՅ䁽)Q ɝ́ٔѡɕձЁɕЁɅ)ɕ]MՔ͡ɕȁͥՅѥݥѠ䰁ȁͽ) ݅́Ս䁡܁ե͡ѕ͕Ё)ѡЁѡѠ䁵ɕ)ѡ̸+q5́ɅѥѼ́ѡЁݡ䁉ɥ)́ݥ́ɹ̰ݔٔѡѼ͔܁ݔ)ݥѠѡt ͅ qḾɅѥɽѼ)́٥Ѽ́ձлt)MՔͼ͡ɕȁѽݥѠ5 ѡ́͡e)Ѽ܁ѡɽ՝ٽչѕɥݥѠ5ɝ!e)ɥͽѥUٕͥ]Qѕ)ѕѼMՔ ՍչɅٕͥа)́Qɕ̈́-ɹ)ȁQє-ѡɥIͽ)ѡȁɥ́ɽѡչ) չ䁅 ͔)=MѕȀܰѡ ɝ́ݥЁ)չ䁅݅ɕ́չɅٕͥЁЁѡȁݥѠ)ݥչѼɸɔЁ1 )ɽ-ɍȁIɽ́ɽѡٕЁݥ)ѕѼ1 ѡ ɅMЁ9ݽɬQ) ɝ́ݥэѼѡЀѥ̸+q]eЁ͍ѡ̳t ՍͅqЁMՔ)͕Ѽ䁉ѡЁЁ'eݥѠ)ȁٕѕѡ݅丁1٥ݥѠ1 ́ɕ)ѡЁЁ́ѡɹ䰁ЁѡѥѥѡЁѕ̸)Qͅѥ́ɔݥѠѥ́今t+q1 ѥ́ɔͽɑȁѡɅ)ݱѡɔɔѥٔɕѵ́ѡЁѽ)ȁͱ܁ѡ٥хɽɕͥѥٔѕɥɅѥ)卡ɕ̰́丁Q͕͔́)͍ɕЁȁѕѥɽ͍ѥ́՜ٕ̻t($$$$+Qȸɕ-ɍ)MAQ5 H= Q= H)ѽ乍(