Featured Research Volunteers
In 1997, David Solomon made a decision to volunteer as a longitudinal research participant for the UCI MIND Alzheimer’s Disease Research Center (ADRC) after having witnessed the effects of Alzheimer’s disease on his sister, Amy, across the decade he cared for her. Across the past 15 years, Dave has contributed extensive neurological and neuropsychological information, collected through annual evaluations, to the national ADRC research database and participated in several UCI-led studies investigating healthy aging and Alzheimer’s disease.
Dave’s wife, Mary, a retired nurse, has served as a faithful research partner over the years, completing annual interviews and questionnaires about her husband’s everyday activities. Without hesitation, Dave has also agreed to donate his brain for research upon death. He explains, “If using my brain would give them another clue to a medicine or whatever to stop this thing, that would make it all worthwhile.” Dave enrolled in the ADRC out of concern about his own memory difficulties, noting, “I knew I had to stay on top of it.” And his annual ADRC evaluations did just that, reassuring him that his memory and word-finding difficulties were normal for his age until 2006, when doctors caught the earliest significant cognitive difficulties that suggested a risk for developing Alzheimer’s disease or another dementia.
In 2009, Dave was diagnosed with Mild Cognitive Impairment (MCI), a condition in which a person’s memory and/or thinking abilities are significantly worse than in others their own age but day-to-day living skills remain intact. Now, another of Dave’s sisters has Alzheimer’s disease and a third has MCI. Mary is convinced that her husband has done so well because, “He takes care of himself; he goes to the gym three days a week; he eats correctly; he stays engaged. All of that has helped him not to have a diagnosis of MCI until two years ago.”
Dave’s long-term volunteer involvement in the ADRC Longitudinal Research Program is characteristic of a life spent giving to others. Born to poor Romanian immigrant parents, Dave grew up on a farm near South Bend, Indiana. While his father worked in the steel mills and his mother struggled to raise the couple’s 11 children, Dave helped run the farm. Studying fell by the wayside as Dave spent his adolescence farming the family’s own land and that of two neighbors. When he wasn’t tilling the earth with horse-drawn plows, Dave was peddling potatoes, chickens, eggs, and other farm products, honing the sales skills he would use in years to come as a real estate broker. Following a three-and-half-year stint in the Merchant Marines as a cook and baker on an old World War II Victory ship, Dave returned to farming for a year before starting his sales career with the Indiana Egg Co-Op. On a dare from one of his brothers, Dave responded to an ad that promised an income of $1,000 monthly selling real estate and easily surpassed this goal. In December 1954, after visiting one of his sisters in Anaheim, Dave got a drive-away car, packed everything he owned in the trunk and moved to California, where he continued his real estate career until 1970. Ready for a new venture, Dave started working as a real estate developer and eventually started his own very successful building firm, K & S Investments, with a friend.
A man of deep faith, Dave gave generously of his time, talents, and resources to the church, serving as a deacon and elder as well as assisting with outreach projects. “I suppose it’s because I know what it means to be poor.” Dave notes, “I’m not a scholar, or a teacher, or a lot of things, but I can bring people together. It gives me joy to be a coordinator and servant to others.” It was through his church that Dave eventually met Mary, his wife of 31 years.
Love and marriage came late for Dave, when he finally felt financially secure enough that life for his wife “wouldn’t be like my mother’s, working so hard.” Over the years, Dave and Mary have continued a life of service through mission trips that, for example, have involved building basic dwellings for people with leprosy (still ostracized) in India, digging water wells in Kenya, and constructing a church for African Americans in Mississippi.
MCI aside, Dave, now 87, continues an active life, volunteering as a messenger at St. Joseph’s Hospital in Orange and for various activities at church. In addition to exercising regularly, Dave enjoys spending time with his granddaughters, having coffee twice weekly with “a bunch of the guys” from the gym, gardening, and taking in the theater with Mary. Of course, Sunday is reserved for church and lunch with friends. We are deeply grateful to Dave and Mary, and every person who volunteers to participate in research at the ADRC. Our special thanks to Dave and Mary for sharing their story so openly out of a desire, in Mary’s words, “to give people more awareness of what Alzheimer’s disease is and get them to start treatment early.” For more information about becoming a longitudinal research participant in our ADRC, please call (949) 824-2382, and select Option 2 to speak to one of our Patient Care Coordinators.
An inspiration – that’s what Nancy Jenkins has been all her life – and continues to be even in the face of Alzheimer’s disease, which is gradually destroying her memory and thinking abilities. These days, Nancy is inspiring others, even her husband, Larry, to follow her footsteps in advancing research for Alzheimer’s disease.
An active participant in the longitudinal research program at the University of California Irvine Institute for Memory Impairments and Neurological Disorders (UCI MIND) for the past 8 years, Nancy is allowing doctors to follow the progression of her disease annually and has agreed to donate her brain upon death. In the meantime, Nancy is participating in every study she can – including donating cerebral spinal fluid and tears for research directed at identifying biomarkers for Alzheimer’s and most recently undergoing an 18-month course of infusions in a double-blind clinical trial of intravenous immune globulin in hopes of helping scientists develop a new, more effective treatment for the disease.
A year ago, when given the option to also join the longitudinal research program as a successful ager, and subsequently donate his own cerebral spinal fluid, Larry got his encouragement from Nancy, who told him, as she has many others in her life, “Yes, you can.” And so Larry joined, donated, and has just scheduled his second annual evaluation. Now Nancy thrives with ongoing support from the many friends who, over the years, gained their strength in facing life’s challenges from her encouragement. Just take Page, a friend of 49 years, who became a school teacher after divorcing her husband because Nancy said, “Yes, you can.” Or Florence, who managed to survive her divorce because Nancy said, “Yes, you can.”
Now Nancy’s lifetime friends Page and Florence, and Terri, Stella, Pat, and Diane surround Nancy with the love, support, and caring she needs to stay positive as Alzheimer’s disease takes its toll. So these friends are taking their turn in saying “Yes, you can” to Nancy in words and actions that make it easier for her to cope with the ongoing changes in her memory, thinking, and everyday abilities as well as the hearing and vision loss that compound the difficulties she now has comprehending and processing information. During 36 four-hour infusion sessions at Nancy’s home that spanned 18 months, it was these friends who laughed and joked with Nancy to make the time go by and then shared long lunches with her afterwards.
While Nancy needs some help remembering her childhood and young adulthood these days, Larry recounts how her father made sure Nancy had a college education, saying “Yes, you can (and will)” to his daughter and instilling the persistence that is now making it possible for her to keep Alzheimer’s disease in perspective with humor, the love of her long-term friends, and the animals – pigs and dogs – on the couple’s one-acre farm in Norco. Even though Nancy’s memories are becoming more fragmented, she still recalls that career options open to her as a young woman entering college in the 1950s were a teacher, a nurse, or a secretary, far from her dream of going into the forestry.
Born in Topeka, Nancy’s family ultimately settled in Garden Grove, where Nancy finished high school before entering college. Nancy met Larry, a senior, near the end of her freshman year and the couple married a year later and had their first daughter, Jo-Ellen, 5 days before their first anniversary.
While Larry finished his stint in the military at Aberdeen Proving Grounds, Nancy went to John Hopkins University, but, as a woman, was only allowed to take classes after 5 pm. In 1962, after relocating to California, Nancy received her bachelor’s degree in psychology from Whittier College and, just three months later gave birth to the couple’s second child, Greg. Nancy and Larry spent five years in Glendora, where a third child, Jeff, arrived by adoption at age two-and-a-half.
In 1969, the couple moved to Norco, their home for the past 43 years. While Larry pursued his career in engineering and computer programming, Nancy taught 4th to 6th graders, specializing in math and reading, and earned her master’s degree in education and administrative credentials from Pepperdine University. A master teacher, she mentored student teachers, much as she encouraged her personal friends and the 85 children participating in the 4-H Club she led with her sister. A forester at heart, Nancy and Larry had a small farm, replete with pigs, goats, horses, steers, sheep, dogs, and cats, where they guided 4-H’ers in animal-related projects and related bookkeeping.
Over the years, Nancy and Larry have enjoyed traveling, especially in pursuit of animals – polar bears in the Hudson Bay, penguins at the South Pole, bald eagles over the Stikine River, and the wildlife of Africa on a “fabulous” safari. In 1984, Nancy ended her teaching career and built a successful business – Complete Health Food Store in Rialto – which she sold in 2003. Two years later, in 2005, Nancy came to the UCI MIND Memory Assessment and Research Center for the first time, concerned about the memory difficulties she had been experiencing since 2000. After a full evaluation, was diagnosed with Mild Cognitive Impairment (MCI), a high-risk pre-dementia state. By 2009, Nancy’s MCI had progressed to Alzheimer’s disease. For Larry and Nancy, being part of the longitudinal research program, “is the biggest support factor we could ever ask for – you get the whole team.”
Even as Nancy’s memory and thinking abilities continue to diminish, she remains clear that she’s going to say yes to any research study she’s eligible for because, in her words, “I don’t want anyone else to have to do it” – to live through Alzheimer’s disease. As a faithful research volunteer, Nancy is courageously standing behind UCI MIND, along with Larry, saying, “Yes, you can” win the war on Alzheimer’s disease and make memories last a lifetime for future generations. For this, all of us at UCI MIND are forever grateful.
By Eric Doran, MS
When Chris was born in 1963, life expectancy for a newborn with Down syndrome (DS) was a little over 12 months of age, institutionalized care was the accepted norm and most physicians and scientists believed these children wouldn’t achieve many of the normal developmental milestones. With loving care from his family and what his mother, Olive, describes as his innate determination to succeed, Chris, like so many others in his generation with DS, has demonstrated that much can be achieved. Chris would develop the skills necessary to talk, read, write, win numerous medals in Special Olympics, create original artwork and vote in every presidential election since Reagan-Mondale. While these achievements are remarkable, Olive is most proud of the fact that Chris developed into a well-mannered, caring and compassionate person. She describes Chris as “one of the world’s beautiful people” and states “there is no question that my life has been infinitely blessed through him and that I am a much better person today because of him.”
Since a one-month old infant, Chris has faithfully participated in seven research projects related to DS. Studies Chris has participated in have investigated genetics, cognitive and behavioral features, brain structure and metabolism and, most recently, Alzheimer disease (AD) in DS. Since 1990 Chris and his mother have volunteered for studies that Dr. Ira Lott and other UCI MIND researchers are conducting to elucidate the relationship between DS and AD. Currently Chris, with Olive serving as his research partner, is part of the Alzheimer Disease Research Center (ADRC)-Down Syndrome Longitudinal Research Program through which he receives annual assessments of his neurological and cognitive function. Olive understood that Chris had a high likelihood of developing Alzheimer’s but was forever hopeful that he would remain free of the disease. During one research visit, when Chris was 42 years old, she reported subtle changes in his functioning.
He began forgetting where he put things, misspelling his name and confusing his phone number with his ZIP code. He was less interested in his art work and music, had trouble following verbal direction, was walking more slowly and taking more time to complete his daily activities. Chris had transitioned into the early stages of AD. Within 3-4 years his dementia progressed to the point that Olive could no longer manage his care at home and had to place him in a care facility; something she had avoided since his birth. Today his dementia has progressed to the point that he is completely dependent on others for assistance and less responsive to others. Watching Chris change is particularly difficult for Olive. “Chris once had an incredible memory; his mind was full with a never ending flow of facts, thoughts, ideas, statistics (his favorite word), trivia and fond life memories. Today that it is all gone. It breaks my heart to watch Chris slowly lose all that he fought so hard to achieve.”
Olive continues to visit Chris weekly and he enjoys these visits that often include periods of ball play during which he laughs with delight, listening to music, time for a tickle or two and plenty of kisses from mom. Though these past years have been difficult, Olive is proud of the contributions Chris has made as a research participant, believing “parents of future children and adults with DS will have answers to some of the questions that were unknown to his father and me, especially those that relate to Alzheimer disease.” We are grateful to Chris and Olive for their past and continued participation in our clinic as well as research on DS, and particularly for sharing their story. If you or someone you know may benefit from services at our clinic, be interested in research participation, or like more information, please call the UCI Down Syndrome Research Program at 714-456-8443.