This page lists the full set of brain donation case studies. They are grouped by disorder: LBD, PSP, MSA, CBD, PD, FTD, and AD. Individual case studies are shown randomly on various pages throughout the site.
Lewy Body Dementia (LBD)
John Aloysius Brogan, born in 1931, received degrees from the University of Chicago and the University of Pennsylvania and was the author of “Clear Technical Writing”. He was an amateur boxer in his younger years.
Neurodegenerative symptoms crept up slowly. Over 10 years before his initial diagnosis, John started to experience an REM sleep disorder. In the middle of the night he would start boxing his wife, Pat, who would scream at him to stop. Over the years, Pat had to keep replacing their lower sheets because John wore holes in them by moving his legs at night.
On a trip back home to Allentown and Philadelphia, some of John’s adult children noticed that John would get lost and that his driving skills had deteriorated. He started to need help on the computer—at which he had been an expert. His speech became very soft and his walk had become a shuffle. In 2009 he was diagnosed with Parkinson’s Disease.
John’s cognitive symptoms gradually became worse. He was hallucinating, falling frequently, and becoming very combative. After he fell and broke his wrist, Kaiser put him on palliative care and later on hospice. When Pat suggested to John’s neurologist that John seemed to have symptoms consistent with LBD, the neurologist asserted that the diagnosis should be Parkinson’s Disease Dementia and ended the conversation.
John was administered Seroquel while in palliative care which made it much easier for Pat and their children to continue to care for John at home. John died in 2016, after almost 2 years on hospice. Pat donated John’s brain to the Mayo Clinic in Jacksonville and autopsy confirmed Lewy Body Dementia with Parkinsonism.
Michael was kind beyond words. His wit unmatched. Most of his career was on Capitol Hill. Married to Linda forty years, they raised three daughters. Michael enjoyed a healthy social life. He loved playing with the grandkids and counted the days to the annual beach vacation.
Between 2013 and early 2020, Michael saw four neurologists, each with a different diagnosis (one wavered between three): first Alzheimer’s, then vascular dementia, then Alzheimer’s, then “neurocognitive impairment”, then frontotemporal dementia (FTD).
Early, there were sleep disturbances, memory issues, occasionally used non-personality type words and tone. Number and word comprehension vanished, but could still read music to play piano, eventually losing this talent. Later, throughout the night, he talked incessantly, kicked, hit, always trying to leave, obsessed with folding sheets, blankets. Personality changes were well set in, as was the inability to work his iPad, tv remote or handle ADLs regularly. Required surgery with anesthesia in spring 2020 resulted in a marked decrease in speech, increased agitation and sleeplessness. By late 2020, his aggression, violence, and Linda’s inability to keep him safe lead him to the ER. Restlessness, agitation, frustration, hallucinations were increasing to nearly 24 hours/day, sleeping for 2-30 minutes at a time. He only wanted to move. Nonstop.
This kind, gentle soul remained hospitalized for months. No medication worked to keep him calm and safe enough to go to a facility. Covid compounded the difficulty placing him because facilities were on lockdown or complete diversion. The day he was finally going to a facility, Michael tested positive for Covid. He survived Covid (!), was transferred to the facility, died two weeks later in late March 2021, age 71. Because of having Covid, Michael’s organs were rendered disqualified for donation. Thanks to Brain Support Network, his brain was donated to Mayo. The report showed Michael had atypical Alzheimer’s (hippocampus sparing) and diffuse Lewy Body Diseases. Both, the most advanced/severe stages.
Jack Denman Davis was born at home in Houston during a 1941 hurricane. He spent 36 years in the Houston Fire Department, retiring as senior captain in 2001. He and his wife raised three children. Jack was involved coaching his daughters’ softball teams. He was an intelligent, charismatic man, interested in cooking, gardening and playing golf.
The first indication that something was wrong came at the age of 68 when Jack started losing interest in most activities. He preferred to watch old western TV shows. He couldn’t be persuaded out of the house unless going to a restaurant. He enjoyed music and good food but didn’t want to attend social activities. He started having trouble talking to people; he couldn’t find the right words. He had trouble going from 1-2-3 on any simple task.
About eight years before his passing, Jack’s driving concerned his family. Twice he drove his car into closed garage doors. He drove through stop signs and the wrong way on an interstate highway. He gave up driving.
With progressively worsening short-term memory issues, his neurologist gave a diagnosis of Alzheimer’s. Jack did not like his doctor; he said, “doctor says I am crazy”. His doctor never mentioned crazy. Jack took Namenda for a year or so, but it did not help.
Jack’s speech and gait got worse. In stressful situations, he would say “6S5” repeatedly. He could not read or write. He could recite numbers in order. His neurologist suspected that Jack had semantic variant primary progressive aphasia, not Alzheimer’s.
In the last year of his life, Jack grew suspicious of most anyone he came in contact with. He paced through the house and was awake most nights. He talked gibberish to his mirror image like he was talking to a friend. He urinated in inappropriate places, i.e. kitchen garbage can or pantry. He needed assistance in bathroom/bathing but fought anyone trying to help.
With the help of the wonderful Brain Support Network and the Mayo Clinic, we know that Jack had advanced Alzheimer’s (Braak Stage VI) with Lewy body disease.
Victoria French was seemingly born to teach. With a Masters degree in education, she committed over forty years to pushing students to reach their full learning potential. When teaching eighth-grade mathematics, Victoria gave particular emphasis to raising the female students’ confidence and showing them that their math skills were similar to or stronger than those of the male students. Victoria also established a scholarship fund for students studying education at her alma mater.
Her life’s commitment to education and in particular, math, began to crumble during a private tutoring session when a column of numbers on a page suddenly moved and slid off the edge. At that time, she had no underlying medical issues; this was the first of many hallucinations. She soon had difficulty balancing a checkbook, then experienced increasing irritation with others, which was entirely out of character for such a sociable person. The symptoms increased for three years before she was hospitalized for a sudden minor illness which then led to the diagnosis of Lewy Body Disease.
For another three years she experienced increasingly vivid and frequent hallucinations, delusions (e.g., Capgras syndrome), disordered sleep, anxiety and depression. During that time, she lost her ability to write with her perfect teacher’s penmanship. Reading became difficult, then impossible.
Issues of balance contributed to a broken hip that put her in a nursing facility for rehabilitation, but she was quickly transitioned to hospice care when, due to dementia, she could not take a step. Progressive loss of control over arms and legs became full torso stiffness with the inability to stand or sit unaided. Over a two-year period, she lost the ability first to recall, then form, words. She finally uttered very little understandable speech. Throughout, she was aware of her surroundings but could not understand what was happening to her.
She was in hospice care when the covid-19 pandemic struck. Although she did not appear clinically ill from the virus, she stopped eating, and in just over two weeks from testing positive, she died.
As a long-time supporter of organ donation, she had arranged to donate her brain to advance research on the illness that claimed her. Victoria’s intended donation program suddenly closed due to the pandemic, but thankfully, the Brain Support Network arranged an urgent donation on the day of her death, thus fulfilling her wish.
The Mayo Clinic neuropathology report confirmed her clinical diagnosis of Lewy Body Dementia with signs of early Alzheimer’s and Parkinsonism. The brain tissue also exhibited pathologic changes similar to what has been reported in a series of patients who had succumbed to SARS-CoV-2 infection.
Harold was an exceptional athlete and scholar. He began acting out his dreams at least 8 years prior to diagnosis. He was first diagnosed with Parkinson’s disease and this diagnosis stood for about 5 years. His movement disorder specialist moved and a new specialist diagnosed Harold with multiple system atrophy. His daughters and wife suspected that he had Lewy body dementia but the specialist didn’t agree.
Harold’s symptoms during the last 10 years of his life included many falls due to orthostatic hypotension. The family did its best to make the house safe for him but it didn’t do that much good. Harold didn’t have much warning that he was going to fall. He also had many urinary tract infections (UTIs) and suffered from syncope.
During a hospitalization in 2021 for a UTI, Harold hallucinated for 10 days. Once home, the hallucinations gradually improved. Less than a month later, he was back in the hospital and hallucinated again. His arms and legs were bruised from kicking and hitting the wall.
After being released, Harold was placed on hospice. He received hospice care for 9 months. He had been an avid reader but lost the ability to concentrate while being read to or watching TV.
Harold was only 69 when he died in 2022. The confirmed diagnosis by the Mayo Clinic was Lewy body dementia.
George B. Handley was born in Jasper, Alabama in 1941. He served in the Army for two years in Okinawa, Japan. Upon returning home, he spent his career as a UPS driver in Chicago. After retiring, he focused on his love of woodworking, walking, playing cards, and even driving. Eventually, his wife Anna noticed that all these new goals showed signs of forgetfulness and confusion.
Misdiagnosis of the disease led him to various doctors for over ten years with a list of medications that caused many symptoms to emerge; hallucinations, loss of smell, double vision, orthostatic hypotension, loss of mobility, fatigue, pain, as well as aggressive and combative behavior.
Sleep disturbances and restless leg issues often disrupted his sleep. For more than twenty years, George’s active dreams were filled with someone coming after him, feet thrashing and kicking, loud screams, biting, hitting, and eventually turning into jumping out of bed. Sometimes these would turn into aggressive and combative battles that the bed became a war zone.
George’s wife Anna, sought out medical interventions but continuously the only response was simply to give medications, which were causing him to spiral into more hallucinations, fainting episodes, panic, and increased symptoms.
George was evaluated and assessed in January 2016 from the Mayo Clinic, in Rochester, MN and returned in April 2016. A PET scan and evaluation determined the clinical diagnosis of Lewy Body Dementia with parkinsonism. George’s Lewy Body Dementia journey had begun.
Two months later, George fell and had a bleed to his brain, causing the new diagnosis to spiral out of control. Anna made the decision to care for him at home where she felt he would be able to regain his strength and continue to live his life in his own surroundings.
For another four years, George would continue his fight as a Lewy Warrior, experiencing the many hallucinations, delusions (e.g. Capgras syndrome), paranoia, agitation, sleep disorder, changes in movement, body functions, and cognitive loss.
George had been placed on hospice and Anna knew that she did not have much time to complete George’s wishes on organ donation. With the help of Brain Support Network, a brain donation was made on the day of his death, in July 2020, to the Mayo Clinic in Jacksonville, FL.
The neuropathology report findings confirmed Lewy Body Dementia.
Susan Jean Hutton was a paralegal secretary for 40 years and enjoyed writing as a hobby, having published a book and several short stories for national magazines.
Sue first started having involuntary movements in her left (non-dominant) hand at the age of 58. The left hand and arm eventually became an “alien limb.” Sue started having difficulty dressing herself as well as other apraxia symptoms. Her cognitive skills started diminishing as did her ability to walk and talk.
After visits with multiple doctors, MRIs, and CAT scans, Sue was diagnosed first with MS, and subsequently with Parkinson’s. Three years later, the diagnosis became “definite” Corticobasal Degeneration.
When Sue died at 64, her brain was donated to the Mayo Clinic in Jacksonville, Florida. Sue’s sons wanted their mother’s brain be autopsied to learn conclusively the cause of death and to be forewarned of any hereditary implications. The Mayo Clinic reported severe Alzheimer’s and Lewy Body Dementia.
The pictures of Sue with her first grandson, Colton, were taken approximately 6 years apart.
Ron Keen was born in June 1951. He married his college (University of Delaware) sweetheart in 1974. He was a patient dad, who parented his three boys with his quiet, loving example. He worked for 43 years at various positions in the state of Delaware, retiring in 2016. He looked forward to spending time with his two grandsons and one granddaughter.
At the time of Ron’s retirement, his wife noticed an unsteadiness in his walk and a difficulty in concentrating. His family doctor referred him to a movement specialist who diagnosed early Parkinson’s.
Over the next three years, Ron became anxious and had some difficulty reading. Because Ron’s blood pressure would drop as he went from sitting to standing, he became unsure on his feet. Given the orthostatic hypotension, the neurologist changed the diagnosis to multiple system atrophy in 2021.
Ron suffered from hallucinations, and was at times belligerent and paranoid. He wandered from the house and got lost several times. After a minor car accident, Ron stopped driving.
Ron’s physical and cognitive condition deteriorated rapidly over the next year, despite participating in his beloved Rock Steady Boxing. Many medications were tried. After a second covid booster, Ron was unable to get out of bed by himself. On the tenth day, he was placed on hospice. He died peacefully in May 2022.
The neuropathology report done with the assistance of the Brain Support Network revealed Lewy Body Dementia.
Ron Kooper had been an art teacher in California for three decades. Curiously, after he retired in 2003, he never painted again. In 2013, he began forgetting his keys and stumbling on words. On the basis of these cognitive symptoms and a positive amyloid PET scan, Ron was diagnosed with Alzheimer’s Disease (AD) by a local neurologist
Ron was the third member of his family to have Alzheimer’s Disease. This made Ron very interested in participating in research and clinical studies. Ron enrolled in a drug trial for an Alzheimer’s medication at the University of Southern California’s Keck School. And he and his wife Eleanor made advance arrangements to donate his brain to support AD research. Ron died in late 2016.
Surprisingly, the neuropathology report from USC showed that Ron had dementia with Lewy bodies and no Alzheimer’s pathology. Ron had REM sleep behavior disorder (RBD) but no hallucinations. He had developed minor parkinsonism, which is common in late-stage AD.
Larry Neff was born in Lancaster, Pennsylvania, in 1945. Larry graduated from Eastern Michigan University and received an MBA from Notre Dame University. He spent his career with Goodwill Industries, rising to executive management. With his wife, Norma Jean, Larry raised three children. Larry was active in his local church, serving on the finance committee where he was respected for his good judgement and no-nonsense approach to financial issues.
The first sign of neurological problems came in 2005 when Larry lost his sense of smell. In 2010 the family detected the first hints of confusion, such as missing turns when driving to familiar destinations. His primary care physician observed dementia in November 2012. In February 2013 Larry was diagnosed with Lewy Body Dementia and he retired from Goodwill at the end of that year.
Early on, Larry’s walking slowed, his posture became stooped, and he adopted a shuffling gait. As the disorder progressed, Larry would hallucinate and sometimes behave violently. Larry would greet “people” he saw in the yard outside, at the mailbox, and in the house, making efforts to ensure that “they” were cared for and comfortable.
As early as March 2013, he hit Norma Jean on the shoulder when he awoke in confusion during the night. Yelling, hitting, grabbing, pushing, and choking caregivers became frequent—making home care difficult because Larry was still very strong. Medication was used to suppress the hallucinations, but it was a struggle to avoid over-sedation.
In late summer 2017, Larry began having trouble toileting, sometimes urinating into trash cans. Also, he thought people were stealing from him. As a result of his resistance to caregivers, toileting needs, and general agitation, he was moved to a memory care facility, in December 2017.
At the care facility, heavy sedation was used to control the violence, though in the last few months of his life the violent tendencies subsided with little medication. Larry passed away in January 2020. His brain was donated to the Mayo Clinic in Jacksonville. The autopsy report confirmed the clinical diagnosis of Lewy Body Dementia.
Joseph Nicolazzi, the only child of Italian immigrants, was born in Chicago. Joe spent summers on a farm. Orphaned at a young age, Joe learned to fend for himself and after a period in the Army National Guard, he purchased and managed a gas station. Joe’s best friend’s father, owner of a flight school, taught Joe to fly. Joe began his first job as a commercial pilot at Piedmont, then Allegheny Airlines, and finally USAirways, spanning a 30-year career as a commercial pilot. Everyone who met Joe was immediately impressed with his good sense of humor and warm personality.
Joe’s first symptom was consistent with Parkinson’s disease: a loss of the sense of smell. Later, during his annual pilot recertification in a flight simulator, he froze—unable to recall what to do during test simulations. This was a frightening experience for him as he had always passed simulator tests with flying colors. After retiring from the airlines, Joe obtained a commercial driver’s license and drove school buses. His daughter recalled that Joe loved to operate large machinery—be it an airplane or a school bus.
Joe was evaluated for possible deep brain stimulation (DBS) but because he did not respond to high doses of levodopa/carbidopa, DBS was not elected. He stayed on low doses of Parkinson’s medication because it seemed to help motor symptoms. In retrospect, the medication may have exacerbated his hallucinations.
Due to Joe’s orthostatic hypotension and his constant “state of dizziness”, his neurologist, a movement disorder specialist in Scottsdale, Arizona, diagnosed Joseph with multiple system atrophy – parkinsonism (MSA-P). By this time, neuropsychological exams reported “cognitive impairments…suggestive of frontal-subcortical [issues] and visuospatial dysfunction.”
During the final two years of his life, Joe was unable to form sentences and, eventually, unable to speak. When Joe died, his family donated his brain to the Mayo Clinic, Jacksonville, intending to support medical research into MSA. Autopsy revealed that Joseph had been struggling with Lewy Body Dementia (LBD), consistent with symptoms of dementia and hallucinations, not MSA.
Andrew Russo was born in 1938 in Pittsburgh, Pennsylvania. A proud US Army veteran, Andy built his career in the steel industry, working as a master welder/boilermaker. He enjoyed traveling and was an avid reader. Andy was also a loyal fan of the Pittsburgh Steelers and Pittsburgh Penguins.
Andy’s first symptoms appeared in the late 1980s and early 1990s. He would act out dreams, speaking loudly while punching the wall, holding onto the bed rail, or punching wildly as if boxing.
Progressively, more symptoms emerged. In early 2000 he observed that he couldn’t smell things. In 2005 Andy, who had always enjoyed riding bicycles, could not balance a bike. Andy began having trouble finding words when speaking; his handwriting became very small; his speech became a whisper; he experienced sexual dysfunction. Andy’s new primary care doctor asked if Andy had Parkinson’s Disease.
Beginning around 2007 until his passing in 2017 Andy visited numerous neurologists at multiple centers. There was no consensus on the clinical diagnosis. Some neurologists diagnosed Parkinson’s Disease Dementia (also known as Lewy Body Dementia); others diagnosed MSA, CBS, and PSP.
The family lost Andy bit by bit over two decades, until he finally passed away in March 2017. Andy’s brain was donated to the Mayo Clinic in Jacksonville, Florida, to support the search for a cure for neurological disorders. Brain autopsy confirmed the diagnosis of Lewy Body Dementia (LBD).
Tom Swiderek was born in Chicago in 1943 and purchased his first motor scooter (from Sears Roebuck) at the age of 10 with money he earned delivering newspapers. Tom started his own business, wholesale distribution to the locksmith industry, and put in countless hours to make it successful. He sold the business in 2008, and retired with his wife to their dream home in southwest Wisconsin.
While Tom had always had “active dreams,” the first indications that something was wrong were his stooped posture, shuffling gait, and constant fatigue. He then started having visuo-spatial difficulty, both when driving and reaching to grasp something. His family dismissed these problems as “age-related” vision problems.
After emergency surgery in 2017 for an enlarged prostate, and the required anesthesia, Tom became a different man. He was paranoid–certain that hospital staff wanted to kill him. Despite a diagnosis of Parkinson’s Disease in 2017, prompted by movement issues, Tom never responded to levodopa. He was always dizzy and fatigued, unable to manage daily tasks.
Finally, in October 2018, after a referral to the movement disorders clinic at the University of Wisconsin Hospital (UWH) in Madison–and an intervening visit to UWH’s emergency room–Tom was diagnosed with Lewy Body Dementia. He moved to a skilled nursing facility.
The day after Thanksgiving 2018, Tom suffered a pulmonary embolism. While Tom recovered, he started leaning more to one side (the so-called “Lewy lean”) and using his hands became more difficult. Tom’s voice, too, grew progressively quieter and his face expressionless though he never lost his memory.
Tom entered hospice care in early 2019, and passed away peacefully on a Sunday morning, in March. Tom said “if something can be learned to keep just one person from getting this horrible disease, my having it will have been worth it.” Tom’s brain was sent to the Mayo Clinic in Florida, where the diagnosis of Lewy Body Dementia was confirmed.
Gary Ullom, born in 1950, received a bachelor’s degree from the University of Arizona, where he met his wife, Linda, with whom he raised three boys. Gary worked as a Materials Manager for a Government Contractor for 30+ years, during which time he served in Kuwait for almost two years. He also received the Motorola CEO Award for Volunteerism.
Gary was an easygoing man, whose quick wit and playful spirit easily filled a room with warmth. Throughout life, he was a sports and nature enthusiast and a lover of learning. Yet, nothing was more important to him than his family and his faith. Gary played the game of life so well, yet it was a game cut short before its final inning. Gary’s opponent, Lewy Body Dementia, slowly robbed Gary of reality and robbed his family of his incredible presence, at first mentally and at last physically.
Gary was not diagnosed with Lewy Body Dementia until late in his 10-year battle with the disease. Starting at age 60, ten years before succumbing to Lewy Body Dementia, Gary began to fall asleep during mid conversation and even at traffic lights. He would also unknowingly become violent during fitful sleep. He would later develop essential tremors and forgetfulness. At age 68, Gary started experiencing hallucinations and temporary dissociation from reality where he thought he was a boy again. Gary’s sleep schedule also became disrupted on a large scale. During his final year of life, Gary’s hallucinations worsened, and he started to lose his ability to communicate coherently. He rapidly declined over a three-month period, where easygoing Gary became combative and eventually experienced loss of physical functions. Gary passed away after a month in hospice care. Gary’s family donated his brain to the Mayo Clinic in Jacksonville and the autopsy revealed Diffuse Lewy Body Dementia and early-stage Alzheimer’s Disease.
Gary’s family is grateful for a confirmed diagnosis and hopes his donation will help researchers get one step closer to finding a cure for neurological disorders such as Lewy Body Dementia to prevent the suffering witnessed firsthand.
Gary Weitzel grew up in a small town in the Nebraska panhandle and started driving tractors on farms at age 10. He spent summers in high school driving a fertilizer sprayer in Nebraska and beyond.
After college and 10 years in the Air Force, Gary joined a commercial airline where he progressed to Captain, flying 747s to all points in Asia. Pilots retire at 60, and Gary returned to farming. Within 5 years he showed memory loss and symptoms of parkinsonism. After months of unsuccessful doctor visits, a neurologist finally diagnosed Lewy Body Dementia (LBD) at age 66.
As the disease progressed, memories of places, names, and events disappeared. Next was how to dress, use eating utensils, and find his room. Hallucinations were a problem every afternoon; nightmares at night. Finally, Gary lost the capacity to speak and, after a year in assisted living, passed away of pneumonia at age 77.
Gary’s wife, Dianne, donated Gary’s brain to the Mayo Clinic in Jacksonville. Autopsy confirmed LBD, Alzheimer’s, and ALS, as well as evidence of concussions during youth.
Progressive Supranuclear Palsy (PSP)
Greg Hitchings was born in Gainesville, Florida, in 1956. Greg loved playing golf and riding his Harley Davidson motorcycle. At age 26 he became a police officer for the City of Pembroke Pines. He retired from the police force in the City of Doral, just west of Miami, in 2013.
Around 2012 Greg had a few falls on the golf course; his golf buddies thought he had swung the ball a bit too hard. By 2014, his falls became more frequent and he started to lose his balance when walking. After a bad fall, and a visit to the emergency room, doctors could not find anything wrong and suggested he see a neurologist.
In November 2016 a neurologist at the University of Florida ran a set of tests on Greg. The MRI test showed brain atrophy on one side. Based on the results of Greg’s MRI and his clinical symptoms, the neurologist diagnosed Greg with Corticobasal Degeneration (CBD).
In 2017 Greg’s balance became still worse and he started to lose his coordination. He had a hard time using utensils to feed himself. Greg used a walker for about a year, and eventually needed a wheelchair. In 2018 Greg needed 24-hour care and began hospice at home.
In January 2019, Greg was moved to a nursing home. Greg’s wife was with him every day, except on two occasions when each of their children was married that summer.
In December, 2019, after an all-night visit by his wife and son, and only after the two had left for breakfast, Greg died at his nursing home. Greg’s wife, Carla, had made brain donation arrangements several months in advance. Brain autopsy results in March 2020 indicated that Greg had Progressive Supranuclear Palsy, not CBD as was earlier diagnosed.
Jackie Araujo was born in Honolulu, Hawaii, in 1938. Jackie was a professional artist, mother of four, and, later, office manager in Silicon Valley, California. Jackie’s first symptoms in late 2003 were fidgeting, falls, and balance problems. Multiple evaluations by multiple physicians resulted in no clear diagnosis. Deteriorating eye sight was misdiagnosed in 2006 and prompted double cataract surgery.
Finally, after visits to multiple neurological specialists, Dr. Jay Nutt at the Oregon Health and Science University diagnosed PSP in late 2007. In January 2010 Brain Support Network made arrangements for the donation of Jackie’s brain to the Mayo Clinic.
Excellent care and regular exercise sustained Jackie until early January 2011 when she lost the ability to swallow. Jackie died later that month. Autopsy confirmed PSP with Argyrophilic Grain Disease (AGD). According to the Mayo Clinic, AGD co-occurs with PSP in about 30% of PSP cases.
Charles (Chuck) Nagy, born 1938, traveled from poverty to financial success via the Army where he served as a paratrooper. Chuck was still working, golfing, hunting, and doing charity projects…until he totaled his truck at the age of 72.
Chuck became agitated, offensive and domineering. He would yell at people, drive recklessly, and fall frequently. He couldn’t sleep through the night. Chuck’s primary doctor would tell Chuck to “behave” and send him home to complete a written Alzheimer’s test. Finally, two adult children took him to a neurologist who diagnosed Behavioral-variant Frontotemporal Dementia (bvFTD).
Eventually, Chuck’s dangerous behavior brought police intervention. He was hospitalized and then placed in a memory care facility. Chuck’s family vigorously sought out information about FTD and realized that doctors, caregivers, facilities staff knew little about the disorder.
The family was tireless in taking Chuck on short outings where, according to plan, Chuck would tire after a few hours and ask to be taken back. When facilities staff geared activities toward men, Chuck was a good participant. But when staff were in short supply, Chuck’s agitation was simply treated with anti-depressants.
In the fall 2016, Chuck started to walk away again from his memory care facility. Rather than walk with him to tire him, the staff grabbed him. Chuck resisted. An ambulance came, Chuck with hospitalized for a month in a geriatric psychiatric ward, where restraints were used for 6 days. Chuck was assessed at 6am daily, and was given increasing doses of psychotropic drugs. The family didn’t want Chuck to be drugged but two previous memory care facilities would not accept him unless he was drugged.
Another path was found: Chuck was placed on hospice (under its dementia category), without the high doses of psychotropic drugs, and another facility accepted him. After 12 hours at the new facility, Chuck displayed stroke symptoms. Weeks later, his legs began to stiffen; his face became devoid of emotion; and he had difficulty swallowing. Chuck died on January 12, 2017.
Chuck’s brain was donated to the Mayo Clinic in Jacksonville, Florida. Brain autopsy reported a different neurological disorder: Progressive Supranuclear Palsy (PSP).
After two years of worsening symptoms and misdiagnosis, Dennis was diagnosed with probable Progressive Supranuclear Palsy (PSP) in 2002 at the age of 57. With that diagnosis Dennis was told there was no known cause, treatment, or cure…and he was sent home.
Later, Dennis consulted with Drs. Bruce Miller and Adam Boxer of the Memory and Aging Center at the University of California at San Francisco (UCSF). UCSF was researching PSP and Dennis agreed to participate in its program, hoping that this research would eventually lead to a cure for others afflicted with the disease.
Dennis’s MRI scans, blood, and spinal fluid samples were used to research new biomarkers for the diagnosis of PSP and evaluate the effectiveness of novel therapies.
Time ran out for Dennis in 2007. Brain donation to UCSF and subsequent autopsy confirmed his clinical diagnosis of PSP and revealed the presence of Alzheimer’s Disease.
Larry Riddle began his career as a professor of theater and stage design at Florida State University. Later at Ikegami, Larry managed sales of studio video equipment to broadcasters throughout the Americas.
One of Larry’s early symptoms, leg rigidity, was misdiagnosed as arthritis in 2000. In 2003, his slurred speech, falls, and cognitive dysfunction led to a misdiagnosis of stroke, though the neighbors suspected that he was alcoholic. Finally, a neurologist correctly diagnosed PSP in February 2004 at the age of 65.
Larry’s daughter, Robin, arranged for the donation of his brain upon his death in October 2007 to the Mayo Clinic in Jacksonville. Larry’s brain autopsy confirmed PSP and its tissue was included in a landmark study published in Nature Genetics in June 2011. In the study, researchers from Mayo Clinic and UCSF identified three new genes linked to PSP.
Keo was born in 1955 in Idaho. She earned numerous college degrees, including a master’s in special education. She was a preschool special education and resource room teacher for over two decades.
Keo and husband Don spent 38 years together, raising two children and exploring all the options this world had to offer, be it through traveling together or through their children’s events, in which they were both heavily involved.
Keo’s first symptoms were gait and balance problems, lack of eye movement, and word finding difficulties. She had trouble getting out of chairs and would collapse right back where she started. Later, she would fall backwards while walking. She fell stiff and straight as a log. It was very scary and so quick that family didn’t have time to react.
She was eventually diagnosed with progressive supranuclear palsy (PSP).
Keo never complained, blamed anyone, or felt sorry for herself. She was a tough, courageous, independent, and remarkably strong woman. Husband Don is proud of her on so many different levels.
As a Christian, when asked to donate her brain to science for study, and perhaps a cure, she immediately supported the suggestion. She was always thinking of others before herself.
The Mayo Clinic neuropathology report identified that Keo had suffered a massive stroke, which caused another fall. She hit her head very hard on a concrete floor. Sadly, she died within hours.
Her husband contacted the Brain Support Network and through their hard work was able to make the necessary urgent donation arrangements just prior to her passing.
The Mayo Clinic neuropathology report confirmed a diagnosis of PSP.
Gary was from a small town in northwest Ohio. He graduated from The Ohio State University in 1969 and started working for Nationwide Insurance right after graduating. He loved the Buckeyes, and attended every game he could through the years. Gary and his wife that time adopted two children, one from Korea, one from Columbus, Ohio. He loved his family, camping, fishing, and scuba diving. Gary and Jeanne were married at the end of 1999 and had a lot of fun, traveling when they could, camping every weekend in the summer and chasing the Buckeyes on the field.
Gary retired after 33 years and shortly after started to lose his balance. In 2010, his speech began to speed up. His balance got worse and his speech became so garbled it was difficult to understand. Jeanne became his interpreter and his shoulder to lean on during his 60’s. Gary began using a walker. His vision became blurred and his eyes would get stuck in place from time to time. His ability to communicate diminished.
Gary went to numerous neurologists. After five years of muscle tests, brain MRIs, and other evaluations, a doctor said Gary most likely had progressive supranuclear palsy (PSP). However, the doctor could not be sure unless Gary’s brain was autopsied after death.
Over time, Gary withdrew more, shriveled up and became a prisoner in his own body. There are no medicines to help with symptoms. Gary survived for ten years, which was much longer than the norm. PSP was devastating and ravished him from the inside out. Gary was just 73 when his esophagus closed up. He was not a candidate for a feeding tube because of a mild heart attack.
After Gary’s death, Jeanne donated his brain in hopes that research could continue. PSP was confirmed. Jeanne hopes that in the future numerous others can benefit from this finding or even find a cure someday.
Multiple System Atrophy (MSA)
LISA ROSENBLATT CARGILE
Lisa was born in California. She attended college in both Santa Barbara (UCSB) and Nashville, TN (Vanderbilt), lived abroad in both Bordeaux and Nagoya, and worked as an elementary school speech therapist.
In March 2016, concerned primarily about a change in her handwriting–and with a sinking feeling–Lisa talked to her primary care physician. Unfortunately, her concerns were dismissed as merely psychosomatic. Nevertheless, she persisted and received a diagnosis of Parkinson’s disease the following month from a neurologist. Her gait, balance, and movement symptoms progressed seemingly rapidly over the next three years. Again with a sinking feeling, she travelled to Stanford for a neurology consultation and was diagnosed with Multiple System Atrophy, type C (MSA-C) in March 2019; this diagnosis was seconded by UCLA neurologists.
Autonomic dysfunction increased, especially orthostatic hypotension and incontinence. Nevertheless, Lisa still managed to walk until July 2020, when she contracted covid. In an abundance of caution, she was hospitalized but received no covid-specific treatments during her three-day stay. After a month of convalescing, she seemingly recovered from covid, but was never to walk again.
She was placed on home hospice. Lisa suffered from sundowning, constipation, dysarthria, and dysphagia. She received a feeding tube in May 2021, which greatly helped with hydration. In November, she fell into a coma for 18 hours, but self-revived. Despite the feeding tube, she stopped digesting food in early January 2022. Without food for three weeks, she passed peacefully in late January 2022, at the age of 53.
With the help of the Brain Support Network, Lisa donated her brain to the Mayo Clinic in Jacksonville, Florida. The brain autopsy confirmed MSA-C as well as MSA-P and additional white matter pathology attributed to COVID-19.
Richard Dexter was the youngest of eleven and only 15 when his father died. He became a Memphis firefighter and paramedic. Richard lived life to the fullest with his wife of 58 years, Salinda. He raised three daughters and loved spending time with his family, friends, and Alabama football.
In 2014, Richard’s best friend noticed his walking was off-balance and he was shuffling. After falling face forward a couple of times, Richard saw a cardiologist, who sent him to a pulmonologist, who sent him to a urologist, with no diagnosis. It was in early 2015 when he passed out for the first time that the doctors began to look at his brain. After many more orthostatic hypotension episodes and visits to a couple of local neurologists, Richard spent a week at Mayo Clinic Arizona. He left Mayo Clinic with a MSA-C diagnosis, later confirmed by a UAB movement disorder specialist.
Both neurologists noted that Richard would decline rapidly as the disease progressed so he should continue to live his life. The family purchased a handicap accessible van. They went to church on Sundays and out to lunch with their friends everyday.
After a bad fall in December 2016, Richard stayed in bed at home. Salinda spent every hour with Richard as his primary caregiver and best friend. With his family, he watched Alabama football games, shared meals, and played games. Richard’s spirits were always up. His sense of humor never dimmed and his joie de vivre was contagious.
In early March 2021, Richard began having trouble swallowing. He could hardly eat or drink, no matter how hard he tried. He passed away peacefully at home a few days after meeting his hospice team and letting them know his daughter, Jana, was his quarterback.
A few years prior to his passing, Richard told his family he’d like to explore brain donation for research. He had dreamed of being a doctor when he was younger and thought donating his brain to the Mayo Clinic in Jacksonville was just the neatest thing. Mayo Clinic confirmed the diagnosis of MSA-C along with cerebral amyloid angiopathy. Only 4% of Mayo’s MSA cases have this combination of disorders.
Suzel Garza was born in 1947 in San Antonio. She was an energetic, fun-loving mom, wife, and full-time office manager. Suzel was very active in her children’s activities, school, and charities. She also took care of a few aging neighbors who depended on her for doctor visit rides, groceries, and medicine.
Around 2009, she started noticing minor symptoms of imbalance. She kept these moments of dizziness/imbalance to herself, justifying them as her tendency to be clumsy. Her symptoms became more frequent and started impeding on her daily life around 2011-2012 when she started falling due to instability. Slurred speech, worsened handwriting, and incontinence soon followed.
At the urging of her family, she reached out to her primary physician, who referred her to a neurologist for further testing. Much of the differential diagnosis was done by a movement disorders neurologist at UT Southwestern. She was given the general diagnosis of cerebellar ataxia.
She underwent environmental toxin tests, genetic tests, neuropsychological testing, PT/OT/SLP therapies, MRIs and DaT scans, naturopathic and acupuncture treatment, hyperbaric oxygen therapy, and spinal surgery. Nothing alleviated her symptoms.
In 2013, she got a second opinion at Johns Hopkins. She was diagnosed with possible Multiple System Atrophy (MSA) – cerebellar type. As Suzel’s cognition and mobility worsened, she developed respiratory stridor, shallow breathing, frequent UTIs, and constipation. She went from needing a cane (in 2013), then a walker, and eventually a wheelchair to keep safe. Her last five months of life were the hardest due to multiple hospital visits, getting a supra-pubic catheter, and the death of her husband of 50 years.
In late 2020, Suzel invited hospice into her home for much-needed care. Thankfully, she generously agreed to work with Brain Support Network to donate her brain to Mayo Clinic for research/diagnosis confirmation. Suzel died in January 2021. The neuropathologist confirmed, “Multiple System Atrophy with severe atrophy of the cerebellum” (MSA-C). She also had inferior olivary hypertrophy, which is uncommon in MSA-C.
Katie Kim was born in 1960 in Seoul, South Korea, determined not to become a typical Korean housewife living in the Buddhist tradition. In her mid-twenties, after graduating from college in Korea, Katie moved to New York City. There, she earned her pharmacy license and began a new career as a pharmacist in 1998.
In late 2009 Katie had dramatic, violent dreams. The NYU sleep disorder center diagnosed her with REM sleep behavior disorder (RBD). She was prescribed clonazepam and her symptoms subsided.
In late 2012 Katie started having trouble riding her bike and experienced sexual dysfunction. By June 2013 Katie had lost her sense of balance, as well as her senses of taste and smell. She suffered constipation and depression. In December, after a DAT scan, Katie was diagnosed with Parkinson’s. Despite physical therapy, occupational therapy, and voice therapy, her condition deteriorated.
In May 2015, back at NYU, a neurologist concluded that Katie did not have Parkinson’s but rather Multiple System Atrophy (MSA). At work Katie’s loss of balance manifested itself when reaching for medicine and she lost count when filling orders. In October she ended her pharmacy career. Still, she and her husband were able to travel and took long trips to Europe and Korea, using just a cane and 4-wheel walker.
In September 2017, after an episode of gasping for air, Katie was placed on a ventilator. During her two-week hospital stay, a trach and feeding tube were inserted. After three weeks of convalescence, Katie returned home home to a hospital-type bed, oxygen delivery, and daily care of her trach.
Katie began hospice care in February 2018. Still, throughout 2018 and into the summer of 2019, Katie and her husband would continue to go out to restaurants, movies, and even hair and nail salons, using a wheelchair and ramp-equipped van. She was last able to get out of bed in October 2019.
Toward the end, Katie suffered intense pain and was treated with pain medication patches, methadone, and morphine. She passed away in January 2020. Katie’s brain was autopsied at the Mayo Clinic brain bank, they reported that Katie had both types of MSA (MSA-C and MSA-P), as well as a very mild Alzheimer’s pathology.
Patsy was born in Birmingham, Alabama in 1944. She LOVED Alabama football and her family!! After retiring from the post office and not one to sit still, she continued working at a local country store, walking dogs, and helping her daughter Suzanne with animal rescue.
In 2016, Suzanne noticed a tremor in her face and hands. This led to a Parkinson’s Disease diagnosis. By 2018, Patsy had developed a shuffle to her gait and maintaining her weight became challenging. In 2019, she needed a walker and started leaning to the right. After brain imaging at the Mayo Clinic, Patsy was diagnosed with Multiple System Atrophy – Parkinsonism type.
In 2021, Patsy’s voice became very soft and hard to hear. In July 2021, she had carpal tunnel surgery. Thereafter, she experienced pain at the surgery site. Patsy lost the ability to move her legs. Her cognitive abilities remained intact.
She was released from her body on January 14th, 2022. The diagnosis of MSA-P was confirmed through brain donation.
Don’s first symptom was a numbness in his right hand, which was initially diagnosed by his chiropractor as carpal tunnel syndrome.
After a few weeks of unsuccessful treatment, he went to his primary care physician, who first diagnosed Don with Parkinson’s Disease.
Over the next six years, Don saw two neurologists, both of whom attempted to treat his condition with the typical levodopa-type medications that are used for Parkinson’s. His condition was non-responsive to these drugs.
As the rigidity of the muscles all over his body continued to worsen, our family did our own research online. We discovered that Don’s symptoms were classic for MSA – Multiple System Atrophy. A third neurologist, who is a leading movement disorders expert, confirmed our conclusion. He removed Don from these Parkinson’s medications, and offered him the best advice that he could: simply adapt to his deteriorating condition. Six months later, Don’s body had become so rigid that he had to be admitted to a nursing home.
Upon Don’s insistence, we made arrangements for his brain to be donated to the Brain Support Network. Don passed six months later. The pathology report confirmed the diagnosis of MSA.
Gregory Rodeno was born in Cleveland but became a lifelong Californian as of his college years. He was heavily involved in many aspects of the wine industry from legal work, to land use planning, to making wine under the family’s label.
A family member first noticed deterioration of handwriting in 2018. Old friends mentioned a “spacey look.” The first consult with a neurologist was in March 2019; Parkinson’s was mentioned as a possibility. Careful hydration and nutrition along with safe exercise (short walks, Rock Steady Boxing, tai chi, and Theracycle) kept Gregory healthy.
In fall 2019, a second neurologist diagnosed “parkinsonism,” prescribed Sinemet, and suggested therapy for balance, walking speed, and voice. Orthostatic hypotension became a pronounced issue. Gregory experienced dizzy spells and fainting.
By spring 2020, short walks became very tiring, but Gregory continued walking outdoors using a cane (later a walker). His mood was generally positive but his motivation to exercise and hydrate were clearly lacking. The family learned later that apathy is a symptom of many neurological diseases – the patient must be continually reminded to complete simple tasks.
Gregory had a consult with a movement disorder specialist, who raised multiple system atrophy (MSA) as a possibility. Balance and gait worsened. Gregory’s voice and swallowing (liquids) gradually degenerated.
A second movement disorder specialist agreed with the probable MSA diagnosis. That physician reiterated the dangers of falling, choking, and stridor, and suggested a CPAP. The family accepted that Gregory likely had MSA and worked to understand the disease. Stair lifts and an accessible bathroom were added to the home to make it safer and more accessible.
In November 2020, Gregory’s condition suddenly worsened: he was unable to support his own weight and was having more trouble swallowing and breathing. He’d lost thirty pounds. His primary care physician said it was time for hospice care at home; thereafter, Gregory was confined to a hospital bed or wheelchair. He continued to eat well (if slowly), enjoyed wine, dark chocolate and conversation, and rarely expressed distress. He put his affairs in order, making sure his family was prepared.
Gregory passed in March 2021. With his prior consent and the help of Brain Support Network, his brain was donated to the Mayo Clinic in Jacksonville, FL. Several months later, a letter confirmed the diagnosis of MSA, with mild Alzheimer type pathology, and some Lewy bodies consistent with incidental Lewy body disease. Mayo Clinic noted MSA with Alzheimer’s is very rare.
Bob Thomas was born in Pittsburgh PA October 1950. He received his undergrad degree from Penn State. Bob was a long distance runner who set many records through high school and college. When he moved to Washington DC to work as a lobbyist after graduating, he started playing rugby. He enjoyed watching rugby until he died at age 57.
Bob’s first neurological problems were REM sleep issues. More than one bedside lamp was broken during his night time dream activities which included protecting his wife, Candy from oncoming traffic. Then problems with bladder control, urogenital issues and orthostatic hypotension became troublesome. He also was experiencing changes to his voice, which sounded very scratchy and hoarse. He got a diagnosis of Primary Autonomic Failure from this first neurologist in 2000. In 2002 he traveled to Vanderbilt University and was evaluated by Dr. Robertson who gave him the diagnosis of probable MSA.
Bob was determined to live his life as fully as possible through his illness. He kept working in the publishing business until 2 years before he died. He loved the business of developing community newspapers and kept in contact with his former colleagues after he retired. He always considered himself to be a very lucky man and was grateful for all the blessings and love that filled his life. His love of life and selfless attitude made him an easy patient to care for. Before he died Bob generously decided to donate his brain. His MSA diagnosis was confirmed at that time.
Joel Thvedt was born in May 1962. After graduating from the University of Chicago, Joel attended UCLA Law School where he met his wife, Patricia, a fellow law student. Joel graduated in 1987 and began a 31-year career as a lawyer, working as a federal prosecutor, civil litigator, and criminal defense attorney. He was active in his community, serving as a longtime scout leader, youth soccer coach, and board member of several non-profits.
In 2012, Joel began to act out dreams: shouting and flailing his arms and legs while sleeping. In early 2013, he developed problems with balance and gait. He began to lose sensation in his feet and started to fall. He had difficulties with speech and handwriting. In 2014, Joel saw a series of neurologists in Pasadena, California, and in December an MRI showed brain shrinkage, including in the cerebellum.
Joel was diagnosed with ataxia and REM sleep behavior disorder at the UCLA Neurology Clinic in January 2015, although the doctors suspected he may have MSA-C (multiple system atrophy – cerebellar type). That same year, Joel began weekly physical, occupational and speech therapy.
During 2016 and 2017, Joel was evaluated at Stanford and at UC San Diego, where movement disorder specialists diagnosed probable MSA-C. Despite orthostatic hypotension, frequent urinary tract infections, increased speech problems, and swallowing difficulties, Joel continued to work as an attorney.
Joel retired in August 2018 but continued to lead an active life with his family. Despite the physical challenges of MSA, Joel remained active and continued travelling with family, using a walker or wheelchair, including trips to London, Iceland, and Hawaii–as recently as August 2019.
During the last six months of his life, Joel was on hospice care at home. He was given oxygen several times a day for breathing problems. Tremors in his limbs and neck worsened. Although Joel was able to talk and eat most foods until the end, he became bedridden. Joel retained a positive outlook and sense of humor until he passed away in his sleep in February 2020. After learning about BSN at an MSA conference in 2018, Joel decided to donate his brain. The brain autopsy at the Mayo Clinic revealed both cerebellar and parkinsonism types of MSA.
John Yanez-Pastor was born in San Francisco in 1962 and grew up in the Bay Area. After graduating from Santa Clara University with a B.S. in Economics, John entered the tech industry and enjoyed a successful career in technology sales.
In 2009, John began having autonomic symptoms. Following his diagnosis with Multiple System Atrophy (MSA) in 2011, John was determined to keep moving for as long as he could. He participated in water therapy twice a week in a local pool. He had physical therapy, occupational therapy, and speech therapy.
John gave generously of his time to support others in the local MSA community. He was always willing to share a positive angle with a family coping with a new MSA diagnosis.
Because John did not want future generations to have to cope with MSA, he participated in an important mesenchymal stromal cell clinical trial at the Mayo Clinic in Rochester. John’s wife, Diana, donated his brain to the Mayo Clinic in 2015 which confirmed the MSA diagnosis after autopsy.
Corticobasal Degeneration (CBD)
Noreen’s first symptoms of dizziness appeared in April 2006 and she was evaluated at the California Ear Institute. Noreen was subsequently diagnosed with dementia: “either Alzheimer’s or Cerebellar Ataxia, with the latter more likely.” In 2008 Noreen was diagnosed at UCLA with a movement disorder, PSP, and not Ataxia. Stanford later confirmed PSP.
Noreen tried Botox treatments at The Parkinson’s Institute but they were not effective. Noreen’s decline accelerated two years after PSP diagnosis. She was not able to do things around the house, such as cooking. She loved crafts but had lost the dexterity to continue.
Noreen had several falls—but never the backwards falls that are symptomatic of PSP. After three automobile accidents in one month, she gave up her driver’s license. In the fourth year after PSP diagnosis, Noreen was confined to her wheel chair.
During her final two years, Noreen lived in a care facility, spending most of that time on hospice. During the last 10 to 12 months she was unable to speak and had difficulty eating. Noreen refused a feeding tube, not wanting to prolong the agony.
Noreen believed that donation and autopsy of her brain was very important. If ever her children or grandchildren exhibited similar symptoms, they would have a record of their mom’s/grandma’s illness. In 2012, six years after PSP diagnosis, Noreen’s brain autopsy at the Mayo Clinic revealed Corticobasal Degeneration (CBD)—not PSP. The autopsy reported concurrent Argyrophilic Grain Disease (AGD) which occurs in about 40% of CBD cases.
Doreathy (Doretha) Harper was born in 1954 in Greensboro NC. She was the youngest of ten children. Doretha had a very diverse career. She became a cosmetologist in the 90s, owned a cleaning business, and in the latter part of her career, was a security guard at North Carolina A&T State University. She was the mother of three children and had three grandchildren.
Around 2010, Doretha was placed on leave at her job as a security guard when they noticed she was having delayed responses during numerous conversations. She would sometimes only answer by nodding or “Uh huh”, “Yes”, or “No”. Other times she could get her words out, but they were delayed.
Doretha participated in speech therapy which didn’t seem to improve her issues with speaking. She never returned to work and was placed on disability. Eventually she could no longer speak, but she was still able to communicate through writing. After a few years, her ability to write diminished. Soon after, she was completely mute and unable to write. She was diagnosed with Primary Progressive Aphasia in 2016.
In 2017, after her husband died, her condition continued to deteriorate. She would go outside and pick up trash in neighbors’ yards and repeat the same activities over and over again. She barely slept and would constantly walk.
Doretha was moved to a memory care unit in May 2017 where she remained until her passing in April 2020, just two days after her 66th birthday. The one activity that remained constant in her life was her need to walk. She would walk most of the day. The facility where she lived was very conducive to walking with its long hallways. Her weight began to decline. She became incontinent and could not bathe herself. The attending physician at the memory care unit diagnosed her with Alzheimer’s.
In the last six months of her life, she began to have more falls. She was unable to walk. She needed to be fed. Her right arm became very rigid and almost immovable. She had trouble getting up from a chair. She would eat flowers that her granddaughter picked for her. She required 24-hour care.
One thing that never declined was her smile. And from all accounts she still had her memories. Though it was difficult to know for sure because she was mute, her facial expressions and smile always told her story.
The pathology report performed by the Mayo Clinic confirmed the clinical diagnosis of Corticobasal Degeneration along with argyrophilic grain disease.
We knew something was happening with our father, but it wasn’t until many years later that we received a diagnosis. Early symptoms were subtle: we attributed them to carpal tunnel syndrome. It began with faint weakness with our father’s left hand, effecting his ability to grasp and utilize his fingers well. After seeing numerous orthopedic doctors, they could only conclude this was related to a recent car accident and suggested surgery.
As another year went by and there was no relief with surgery and physical therapy, new symptoms began — altered posture, executive dysfunction, mood swings and intermittent tremors with no known cause. We suggested he see a neurologist to see if something more was going. Thankfully, he found Dr. Erin Fienstien, out of UMDNJ, a movement disorder specialist. She quickly diagnosed him with corticobasal degeneration.
Our father lost limb function slowly. Then he began to fall and had difficulty walking, eventually requiring a wheelchair. Later, he had difficulty speaking, eating and caring for his own activities of daily living. Our mother, Joanice, was his primary caregiver. Without her, it’s very likely he would have passed much sooner. She made sure that he was getting nutrients and medications, and cared for any wounds.
About two years before he passed, he asked his children to come over, to have the “end of life discussion” we had all been dreading. Once we got there, we found ourselves laughing and reminiscing. We found our way through that awkward and terrible conversation. It was the best last night we had. His speech quickly declined after that. Although he couldn’t talk, he was cognizant of what was going on.
The pathology report confirmed the initial diagnosis. We did not expect anything different. He felt so strongly that he wanted to donate his brain to study this dreadful disease and hopefully help someone else somehow.
In the early 2000’s, Connie Martin was diagnosed with Inclusion Body Myositis (IBM). Her symptoms were atrophy of the quadricep muscles, causing frequent falls. Her many falls were attributed to IBM, not dawning on her family that there might be another explanation.
In 2017, Connie began struggling with diminishing hand dexterity and a left hand tremor. As an avid quilter, when Connie could no longer effectively sew, she became determined to find answers.
The doctors at the Muhammad Ali Parkinson’s Center in Phoenix, AZ, quickly diagnosed Connie with CBD in the spring of 2018. Immediately, Connie began receiving physical, occupational and speech therapy through the Center. She participated in a favorite painting class and a group voice class. The Center offered much support and encouragement not only to Connie, but to her family and care team.
Initially, Connie was ambulatory and still driving. Connie gave up driving, began using a walker, and moved in to an independent living community in the short span of time from April to October 2018. By February 2019, her condition had seriously declined and family recognized her need for full time assistance. She moved into a small group home in April 2019. She remained there until March 2020. In January 2020, Connie experienced her first serious choking episode. Eating was difficult and slow, but she insisted upon doing it herself. A swallow study confirmed that her ability to swallow was significantly impaired. Connie repeatedly declined a feeding tube.
With the onset of COVID-19 and the impending lock-down of the group home, her family moved her home and brought Hospice on as part of the care team. Connie’s children worked together to give her 24-hour support and care from March 9th until her death on May 14th. Though it was hard to watch their mother decline, Connie received the type of end of life she most desired: at home, at peace, with her kids, allowed to make choices for herself. Despite the challenges, Connie woke up with a smile every morning, cracked jokes and just got on with it. There were wonderful moments, and hard moments, and boring moments. Just like all of life. Every day was a lesson in living fully and loving deeply.
On May 9th, Connie didn’t get out of bed and spent most of the day non- responsive. From then on, it was a quiet, gradual slipping away, until she passed peacefully on May 14th.
Brain donation in the pursuit of answers and cures to this disease was important to Connie. Her brain tissue was quickly prepared, and with the amazing support of the Brain Support Network, Mayo Clinic was able to confirm Connie’s condition as CBD with argyrophilic grain disease (AGD) present as well.
The first time Sandy’s wife knew, for sure, that Sandy had neurological problems, was January 2016, four years before he died. Sandy was exiting their church parking lot and drove out into the road without stopping. Sandy yelled “I can’t find the brake!” He finally was able to pull over and the car rolled to a stop. Sandy’s wife looked down and his feet were pressed up against the door, nowhere near the brake. The next morning they scheduled an appointment with a neurologist.
In fact, Sandy had been referred to this neurologist about six months prior by his primary care physician who noticed that something was not right. Sandy put off making an appointment, thinking that he just needed more exercise. Looking back, Sandy had experienced stiffness and a lack of balance since the summer of 2014.
About 35 years prior, when Sandy was in his 30s, he was diagnosed with multiple sclerosis (MS), but the disease had been in remission for almost 30 years. Also, he had been diagnosed with NPH (normal pressure hydrocephalus,) and had undergone brain shunt surgery.
Eventually, Sandy was referred to Dr. Pravin Khemani, a movement disorder specialist. When a trial prescription of carbidopa/levodopa didn’t have any effect, Khemani knew Sandy had an atypical parkinsonism. Khemani’s diagnosis wavered between Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD).
Sandy lost his abilities, one by one, eventually losing the ability to walk. Excessive weight loss, fatigue, incontinence, and numerous backwards falls were all consistent with PSP and CBD. The left side of his body was affected first, and much more severely than the right. Sandy’s wife was grateful that his mind was sharp until the end.
Sandy was luckier than some. His swallowing issues were very mild until his last few days. He was able to speak, eat, and think, right up until then. She felt unusually lucky to be able to keep Sandy at home, knowing that not everyone enjoys this luxury. When the final decline started, it proceeded quickly and Sandy died in December 2019. The pathology report performed by the Mayo Clinic confirmed the clinical diagnosis of Corticobasal Degeneration along with NPH and MS.
Family and close friends first noticed very mild changes about 2009. There wasn’t anything that really effected Loyd’s day to day functions. At first there were just a couple of angry outbursts at service personnel. Totally unusual for Loyd but not out of the norm. His driving became erratic; he began driving faster and changing lanes abruptly. He also developed erectile dysfunction around the same time. These were concerning but still not red flag warnings. After a couple of times of losing directions and starting to have vivid dreams, I finally convinced Loyd to go to our primary care physician (PCP).
Loyd did not see anything wrong but agreed to go just because I asked him to. This was in 2014. It took a couple of office visits to our PCP to convince the physician something was wrong. He finally ordered an MRI. There were changes with the hippocampus. In the summer of 2014, we finally got in to see a neurologist. He ordered an EEG, lumbar puncture and lab work. The neurologist diagnosed Alzheimer’s in the fall of 2014. Loyd started on memantine. As he seemed to decline quickly., I asked for second opinion. We were referred to Dr Womack at UT Southwestern in Dallas. Dr. Womack’s opinion was if this was Alzheimer’s, it was very atypical. Dr Womack leaned more toward dementia with Lewy bodies, progressive supranuclear palsy or corticobasal degeneration.
Loyd developed an uneven gait and was holding his left hand in front of him at waist level. Memantine was discontinued while carbidopa/levodopa (Sinemet) was started along with rivastigmine patches. The patches caused severe skin irritation, so it was discontinued. The Alzheimer’s medications did not seem to help anyway. The carbidopa/levodopa seemed to cause increased pacing and anxiety. Loyd was rapidly declining. He started to fall and became in continent. From original diagnosis in the fall of 2014 to death in the fall of 2017, Loyd went from a physically healthy man to being totally dependent. Upon brain donation, it was discovered that Loyd had corticobasal degeneration.
Judith Plambeck Papesh was born in November 1945 in Davenport, Iowa, one of three triplets. Judy graduated from the University of Northern Iowa with a major in art education. Her career was divided between raising her family, teaching art, and in later years, the banking industry. She was an accomplished artist and especially enjoyed jewelry.
Subtle first symptoms began in mid-2012. When asked a simple yes/no question, for example, she would often answer with the opposite response she was intending. Phone conversations were shorter and she withdrew socially. In February 2014, while an MRI came back as normal, a mini-mental exam resulted in a referral to a neurologist. Evaluation resulted in a diagnosis of mixed dementia, including both Alzheimer’s disease and Frontotemporal Degeneration (language variant).
By October 2014, she could no longer balance a checkbook–a source of great frustration. She had trouble finding her words and no longer spoke in complete sentences. In March 2015 Judy and her husband moved from a 2-story to a 1-story home to eliminate the danger of navigating the stairs. But balance problems continued, resulting in a number of falls.
A second MRI in June 2015 showed brain atrophy. By August, Judy needed assistance with most activities of daily living. Tremors and other symptoms of parkinsonism were treated first with carbidopa/levodopa. By October, Judy was unable to get out of bed without assistance.
In January 2016, Judy was admitted to in-home hospice care, due to weight loss and aspiration, but was discharged in April because she had “stabilized”. In July, Judy was re-certified for hospice and by the end of that month had stopped talking altogether, didn’t respond to questions, and showed little or no emotion. But in September, she was again discharged from hospice because “she wasn’t declining fast enough”.
In December 2016, sleeping most of the day, Judy was admitted to hospice for the third time. By April 2017 she had lost 34 pounds and she could no longer support her own weight. Judy entered a long term care facility on April 6 and she passed away two weeks later.
Judy’s brain was donated to the Mayo Clinic in Jacksonville, Florida. Three years after an initial diagnosis of Alzheimer’s, brain autopsy revealed a pathology of Corticobasal Degeneration (CBD), along with Argyrophilic Grain Disease (AGD) which is found in about 40% of CBD cases.
Sandra Staley was born in 1943. She graduated from Clarion University with a degree in Education and was a wife and mother of four children. Sandra had a history of migraines and Type 2 diabetes.
In late 2012 her family first noticed her anxiety and social withdrawal, and thought it might be related to blood sugar levels. A year later the family noticed her first struggles communicating and scheduled a visit to a neurologist. At this point she was off all diabetes medications and controlled blood sugar levels with diet and daily walks.
The neurologist diagnosed dementia without behavioral disturbances and prescribed Aricept. By mid-2014, the family noticed balance issues, postural leaning when walking, social withdrawal, and verbal repetition.
In May 2015 a second neurologist diagnosed her with Alzheimer’s Disease. Sandra declined rapidly through 2015. She was anxious and incontinent, had balance issues, struggled with activities of daily living (ADLs), and required 24-hour supervision/care.
Believing symptoms didn’t correspond to Alzheimer’s Disease, in January 2016 the family took her to another neurologist who diagnosed her with Frontal Temporal Degeneration (FTD). He noted her restlessness and motor parkinsonism symptoms (decreased facial expression, rigidity, and postural instability). He took her off Aricept. That spring Sandra started to wear a brace to prevent her left arm, hand and fingers from contracting. That summer she needed assistance to walk.
Noting the rapid decline in her motor skills, the neurologist who first diagnosed FTD revised his diagnosis to Progressive Supranuclear Palsy (PSP)—another disorder within the FTD umbrella.
Sandra fell in July 2016 and moved to a skilled nursing unit. With some assistance she fed herself. Her left foot started to contract. By the end of 2016, she required 100% care, even for eating. While she spoke little, she still recognized all family members.
In May 2017 she began having trouble swallowing and in June, after aspirating food, she was no longer able to safely eat or drink. Later that month she passed away peacefully with her family by her side.
Sandra’s brain was donated to the Mayo Clinic in Jacksonville, Florida, which reported a diagnostic pathology of Corticobasal Degeneration (CBD), a movement disorder subtype of FTD more rare than PSP. The brain autopsy revealed that Sandra also had pathologies of Argyrophilic Grain Disease and Parkinson’s Disease.
Parkinson’s Disease (PD)
William Burkamp had an accident when he was 9 years old, requiring surgery on the right side of his brain. This caused temporary paralysis on his left side. Physical impairments resurfaced as he aged. The family always suspected his decline to be a repercussion of this trauma.
Bill served four years in the Navy, moved to Ohio and began a career with the Newark Air Force Station. He married and started college in 1967. Two daughters and 14 years later, he earned his degree. He retired in 1996 and became active in five local veteran organizations.
Bill’s social skills began to diminish in 2007. And he was unable to react in emergency situations. In 2012 he stopped driving. His wife Mary took Bill to the doctor, sharing observations of obsessive compulsive disorder, weight loss, excessive daytime sleepiness, confusion, separation anxiety, and apathy. Bill had an MRI in 2012; “Alzheimer’s” was the diagnosis.
A year later, Bill fell six times in 12 hours. New brain imaging led to a new diagnosis — “Pick’s Disease” (which is another name for frontotemporal dementia).
The family was given the option of waiting months for an appointment with a neurologist, for evaluation, but felt comfortable not taking that step. Even wrong knowledge is power. Once Bill had a diagnosis, he settled down and accepted his various limitations. Most days were good, some were long.
In early 2018, when Bill was suddenly unable to assist with transfers and could no longer feed himself, he was placed in a rehab facility. After 4 months, he came home, where he lived for the rest of his life. Over those next three years, the family adjusted its lifestyle and obtained home health equipment to maintain safety and quality of life.
On July 31, 2021 at 2am, Bill told his wife he was cold. She covered him up, with his favorite blanket, one last time. Bill’s brain was donated to the Mayo Clinic in Jacksonville, Florida. Through their work and the kindness of Brain Support Network staff, Mary now knows that Bill had Parkinson’s Disease (which explains the rigidity and stiffness), mild atrophy in the cerebellum, and mild vascular disease.
Jack Campbell was born in 1939 in Cleveland, Ohio, where he spent his childhood. He graduated from Marquette University in Milwaukee on a Naval ROTC Scholarship, and later earned an MBA from San Francisco State. Jack spent his entire 33 year career working with Coopers & Lybrand, subsequently PriceWaterhouse Coopers. He retired in 1999.
Jack’s first neurological symptoms were a dragging of his foot and a loss of smell. In his first visit to his neurologist, Jack was diagnosed with “probable” MSA and given a life expectancy of 5-7 years. This diagnosis was reinforced by the fact that Jack received no benefit from traditional Parkinson’s medications.
Both the Parkinson’s Institute and Dr. Michael Aminoff at UCSF confirmed this “probable” MSA diagnosis. Jack participated in a study at Stanford to learn more about MSA diagnosis. He voluntarily gave up driving a few years before his death. He suffered from severe back pain throughout his final 5 years. His once resonant voice became faint, he had problems with bladder and bowel function, and low blood pressure.
Jack’s mobility became increasingly compromised until he was bed bound. Fortunately for Jack and his family, his mental capacity remained good throughout his 5 year decline as did his sweet nature. He was a joy to be with and to care for. He died at home in 2016 after about a month on hospice with his wife Tish by his side. Jack supported the plan for brain donation organized by Brain Support Network.
The autopsy report from the Mayo Clinic in Jacksonville, Florida, revealed that Jack did not have the pathology of MSA. Instead, Jack had Parkinson’s Disease, as evidenced by the location of the Lewy bodies in his brain. In addition he had mild changes of the Alzheimer’s type and hardening of the arteries.
Paul was a lifelong scientist. He discovered new insect species subsequently named by others for him, and his research on Lymantria schaeferi was his proudest professional accomplishment. He appreciated the natural environment and its creatures. Mount Schaefer in Antarctica is named in his honor.
Paul’s journey with neurological issues began in the spring of 2015. He tried to stand at the end of a church service and could not stand up from his chair. Paul was diagnosed with normal pressure hydrocephalus (NPH). A shunt was placed. This enabled Paul to walk again.
Within a month of the surgery, Paul began experiencing tremors in his hands, depression, and sleeping difficulty. There was confusion as to whether the shunt placement was not successful or whether these were side effects from the surgery. There was also confusion as to whether the anti-depressants Paul was taking were causing the tremors. Further, Paul recalled tremors prior to the surgery but other family members did not. Paul saw a neurologist who diagnosed Parkinson’s disease (PD). A different neurologist seen a few months later didn’t think Paul had PD.
In the summer of 2015, Paul began experiencing choking problems, communication issues (thought processing, word-finding, etc), mild cognitive impairment, and increased anxiety. Seeing new physicians and having tests done caused Paul great anxiety. There was a question as to whether the choking problems were caused by acid reflux or PD. Sleep continued to be a major issue. In 2016, he could not draw a clock well which was very surprising given his superior visuospatial skills.
By the spring of 2017, Paul was experiencing daily headaches whenever he was not lying down. The shunt was tied off to see if that would help. Unfortunately that did not.
Into 2019, Paul began exhibiting classic parkinsonism — slow movement, soft voice, stooped posture, and more swallowing problems.
Paul died in June 2020. In keeping with Paul’s life of science, his family donated his brain for research. It would found that Paul had Parkinson’s disease and moderate hydrocephalus.
Frontotemporal Degeneration (FTD)
CHARLES ADAMS, JR.
Charles (Charlie) Adams was born in 1950. He established a business as an electrical contractor. Charlie was a loving and creative father to three children.
In hindsight, Charlie’s symptoms, especially apathy and lack of empathy, started in 2001. He gradually changed from being an imaginative, funny, and thoughtful husband to being apathetic about birthdays and holidays. He showed indifference, sarcasm and irritability. Charlie began drinking heavily, and by 2005 was beginning to be more unreliable at work. Charlie started flushing his food and lying about eating. His family believed that his main problem was his alcohol use.
Interpersonally, Charlie stopped listening to others, and talked incessantly “at” his family, with a very self-centered focus, making him hard to be around. His family continued to attribute this to his being an alcoholic.
Charlie entered treatment for alcoholism in 2014. After a few days at the treatment center, Charlie’s counselor called to ask “what else is wrong with him?” The counselor said Charlie was unable to understand homework instructions, and asked if there were an underlying organic issue. Given past issues, Charlie’s wife Libba believed that Charlie’s problems were possible ADHD.
Once he returned home from treatment, Charlie’s poor communication skills and apathy were still present. His interpersonal skills, and personal hygiene declined considerably through the last 3 years of his life. He was resistant to seeing any medical professionals. (He remained sober to the end of his life.)
As a clinical social worker, Libba was familiar with different types of dementia. She dismissed frontotemporal dementia (FTD) as a possibility since Charlie didn’t fit the profile of overeating and binging on carbs. Once Libba learned that some FTD patients exhibit anorexic-like behaviors, she contacted the Association for Frontotemporal Degeneration and joined an online FTD support group.
In the last week of life, Charlie used hand gestures to express that he loved us, and was easily tearful. He kept his sense of humor to the end. We are grateful that Charlie died at home, with his family close by his side.
Charlie’s brain was donated to the Mayo Clinic in Jacksonville with the support of the Brain Support Network. The post mortem report confirmed the diagnosis of frontotemporal dementia – behavioral variant. It was a great relief to have the results, as there had been no neurological support due to the resistance and negativity associated with FTD.
Sharon (Sherry) Cornwell was born in Minneapolis, MN in 1953. Sherry grew up in an active family, and was an excellent skier (both water and snow). Life was an adventure to Sherry, and she lived it as such. She loved time with her family and was a devoted daughter, mother, and wife. Sherry was a well respected HR Recruiting Manager, and was sought out to present her recruiting processes at training events across the US. She was also an artist, with her own stained glass studio in her home.
In 2014 at the age of 61, her family started noticing personality changes. Inappropriate comments and unusual mood swings and behaviors. In 2015, she quit her job with no notice, and lost interest in normal activities like gardening, cooking, and family functions. By 2016 she had severe OCD issues like excessive driving, worry about her kids, and heavy drinking. Initially a psychiatrist diagnosed her with depression, but her family knew it was much more than that. After neuro-cognitive testing, she was diagnosed with Frontotemporal Dementia in December 2016. Her family had never heard of FTD before. The disease progressed rapidly. Sherry gained weight as her activity levels dropped. Her voice started changing and she talked less and less, as she struggled to put words together. In 2018 home care was brought in to help with her care. She was becoming incontinent, refusing to shower, and choking on her food. The only thing she liked to do was ride in the car. In March 2019 she was placed in memory care. As the disease progressed, she lost more weight as eating/swallowing became more difficult. Talking was only repeating words she heard, and she showed no emotions at all. Luckily, her memory was unaffected and she knew her family until the end. Her journey came to a peaceful end in November 2020.
Brain Support Network arranged her brain donation to the Mayo Clinic. Mayo’s neuropathology report diagnosed frontotemporal lobar degeneration with TDP-43 (FTLD Type E).
Ann was a successful business executive, loving wife and devoted mother of three children. She was the youngest of five children. Two of her older brothers passed away in their mid-to-late 50’s after battling neurological disorders, so her family was keenly aware that Ann faced a genetic risk.
Ann was diagnosed with frontotemporal dementia (FTD). It is difficult for her husband Andrew to pinpoint exactly when Ann began to manifest the first behavioral symptoms of her illness. Perhaps the first indication that something was amiss began when she started to skip their regular early morning runs. Ann and Andrew had run several marathons together. She led an extremely healthy lifestyle.
As the FTD progressed, Ann gradually became increasingly sedentary and began to withdraw socially. She grew quieter, spent more time reading and sleeping. Her once bright personality began to dim. Her appetite increased, causing significant weight gain. When Ann began to wander from home, Andrew hired daytime help. One day while Andrew was at work, he received a frantic call from the caregiver indicating that Ann had left the house unnoticed and could not be located. Andrew called the police, who mounted a search. Andrew realized that Ann required a higher level of care and oversight. This prompted the painful decision to transfer Ann to a memory care facility.
When Ann moved to the facility, she was the youngest resident and the most physically able. She did not resist the move and throughout her almost 3 ½ years living in the facility, she remained docile and pleasant. Gradually her memory faded, she grew emotionally numb and eventually became totally nonverbal. During the latter stages of her illness, Ann’s physical state worsened and she was ultimately confined to a wheelchair.
Ann’s brain was donated to the Mayo Clinic in Jacksonville with the help of Brain Support Network. The neuropathology report confirmed the diagnosis of frontotemporal lobar degeneration.
SUZANNE BARCLAY LEVINE
Suzanne Barclay Levine’s first symptoms of neurological decline came in late 2016, age 71, with personality changes. She became more judgmental and would speak without a “filter”. Her judgement also seemed to be impaired. In March 2018, Suzanne drove her car forward into the garage wall, explaining afterwards that she thought the car was in reverse. She didn’t stop driving until a year later.
In early 2018, testing revealed memory loss and mild cognitive impairment. Weight loss, though without a loss of appetite, was significant in 2018. Despite having been an avid cook and baker, Suzanne stopped preparing meals that year.
By January 2019 Suzanne’s handwriting had deteriorated and dysarthria became apparent. While her comprehension remained good, she had to search for words. Tests revealed that she had begun to aspirate silently when she swallowed. By April 2019 Suzanne had started to use a wheelchair to move long distances, like passing through an airport or visiting a department store.
A neurological evaluation in August 2019 concluded with a diagnosis of frontotemporal dementia (FTD) with parkinsonian features, though Alzheimer’s Disease and ALS (amyotrophic lateral sclerosis, also called motor neuron disease or MND) were not completely ruled out. Trials of dementia medications, Parkinson’s medications, cannabidiol, and antidepressants were not helpful. Following a minor fall, Suzanne was afraid to stay home alone and a caregiver was hired during the day.
By October 2019, Suzanne had become almost totally nonverbal. She had lost interest in most things, slept a great deal, became less diligent about hygiene, and exhibited diminished appetite.
Suzanne moved to an assisted living facility in mid-December, but was able to visit her son for three days at Christmas. At the end of the year Suzanne went to the hospital in respiratory distress and was placed on oxygen. She was subsequently moved to a hospice facility and passed away in January 2020.
Suzanne’s brain was donated to the Mayo Clinic in Jacksonville, Florida. The autopsy confirmed FTD but also found ALS and the posterior cortical atrophy type of Alzheimer’s Disease. Suzanne enjoyed life right up to the day she entered the hospital, and that is how her family remembers her.
Allan Pipkin, born in 1955, resided most of his life in El Centro, California. He played football (defensive end) at the University of the Pacific. In 1980, he graduated with a Bachelor’s in Business Administration from San Diego State University. He married Susan Jimenez and together they raised four children. Allan led the family trucking business which his father started in 1936, managing operations throughout California.
In his mid-fifties, we thought something was awry when our Dad started repeating himself. This verbal repetition became severe and chronic. He exhibited hand tremors and his hygiene deteriorated. He often spent entire days on a park bench, watching cars pass by. He became unpredictable, with occasional profane outbursts when dining out. Later, his vocabulary shrank to a few words and eventually he totally lost the ability to speak. At the same time when we went for drives around town, playing some of his favorite old songs, he would sing along every word.
His first diagnosis by a neurologist was for Primary Progressive Aphasia. An MRI confirmed he had severe left temporoparietal atrophy. The neurologist noted that this could result from brain trauma (e.g. playing football through college) or a genetic issue. Our Dad’s father was thought to have had Alzheimer’s disease and his sister may have had another neurodegenerative disorder. We placed Dad in an assisted living home for around the clock care.
Dad’s health declined further. He was constantly falling. He forgot how to swallow, instead pocketing his food in his mouth. Our Dad, once 6’4” and nearly 250-pounds, shriveled to 138 pounds. Allan Lee Pipkin passed away in October 2016, at the age of 60. Brain Support Network arranged his brain donation to the Mayo Clinic. Mayo’s neuropathology report diagnosed frontotemporal lobar degeneration (FTLD).
Carol Simon, born in 1947, was college educated and well-read, and a master of the New York Times daily crossword. She excelled at her profession as a certified tumor registrar at a local hospital, attending yearly state and national seminars to keep up with the latest developments in her field.
Beginning in 2000, Carol started to withdraw and seemed slightly depressed. In 2004, she began having trouble remembering faces and names. Her apathy grew more severe and she lost her compassionate reflex. She progressively lost interest in trying new things—eventually being willing only to dine in few restaurants and to order the same meal each time.
As she lost her need and desire to socialize, she pushed away her friends, one by one. She lost interest in traveling, watching the television shows she once enjoyed, and even in seeing her only son and grandchildren. Instead, Carol took comfort in habitual and repetitive things. In 2006 she left her career.
Carol was finally diagnosed in 2008 with the semantic variant of Frontotemporal Dementia (svFTD), sometimes referred to as “semantic dementia”. By that time Carol could not name the last 5 presidents or common zoo animals shown in pictures. She had difficulty remembering people, places, and things.
Walking outside became her only enjoyable activity and she did this, with an escort after 2014, regardless of the weather. Carol retained the ability to dress herself, take (infrequent) showers, and make simple breakfast and lunch—preparing the same meal every time. She lost her capacity to read and write by 2016.
In her final months, Carol’s speech became incomprehensible. She was fidgety, literally pacing back and forth in the house all day, or taking walks outside. Her routine became eating, walking, and sleeping. She was in her own world. When Carol died in 2017, her brain was donated to the Mayo Clinic in Jacksonville, Florida. The brain autopsy confirmed svFTD.
Alzheimer’s Disease (AD)
David was born in 1956 and was a hard worker from an early age. He began delivering newspapers at the age of 14, drove a semi-trailer truck most of his life, and owned/operated a successful storage container business. David could fix anything. And he had an incredible sense of direction.
David began having personality changes in 2010 and divorced his wife in 2012. The divorce was unexpected and no one understood why he chose to leave the woman he’d loved and cared for so much. He asked his daughter to take control and operate his storage container business in 2012 when he confessed he was getting confused with numbers and just wasn’t as clear headed as he used to be.
Over the next several years, David exhibited odd behaviors. He sold his home, cars, furniture and most of his belongings, choosing to live in a small camper trailer with his dog and only a few personal items. He secluded himself from others except speaking on the phone with his daughter daily.
In 2018, after much convincing, his daughter talked him into going to see his doctor regarding forgetfulness. While David was at the doctor’s office, the doctor phoned David’s daughter and told her he could not let David drive himself home and that someone would need to come get him. David had performed poorly on simple cognitive functioning tests and was a danger to himself and others driving. David moved in with his daughter at this point.
His decline continued over the next two years. He was diagnosed with Lewy body dementia. Well in advance of his passing, David’s daughter made arrangements to donate his brain. Upon brain donation, it was discovered that, in fact, David had the hippocampal sparing type of Alzheimer’s Disease (AD). This type of AD is shorter in duration, has an atypical presentation, and often affects those at a younger age than typical, late-onset AD.
Andrea Colvin was born in 1965. She had a successful career as an accountant and financial controller. Together with her high school sweetheart, Andrea raised two children. She was a selfless, devoted mother. She enjoyed motorcycle rides with her husband and friends, scrap-booking, and reading.
In 2014, at the age of 49, Andrea began having issues using a computer and completing tasks at work. She struggled with taking notes and following conversations. Simple things at home and work became challenging.
Despite difficulties articulating what she wanted to say, she kept smiling and engaging with her friends and loved ones. She spoke less and less. Eventually, she stopped talking altogether, except to say “love you” to her family and acknowledge others.
In 2019, Andrea’s motor skills began to decline. She had difficulty walking, shuffling her feet more than taking actual steps. In 2021, Andrea began to lean when she walked and would lose her balance. Also, her neck muscles became rigid, causing a stooped posture. After a seizure, she stopped walking.
Throughout her disease, Andrea was able to receive care and remain at home with her husband and family. She was given multiple diagnoses over the course of her disease, starting with aphasia, Early Onset Alzheimer’s, and Parkinson’s. Her last diagnosis before she died was Lewy Body Dementia. Andrea passed in December 2021. Her brain was donated to Mayo Clinic Jacksonville. The neuropathology report said no Lewy bodies were detected. The confirmed diagnosis was advanced Alzheimer’s disease.
Mary Gasho (nee Brainerd) was born in November 1942. After high school and one year of college she married and moved from Iowa to Minnesota. Mary and husband, Bill, became parents in 1967 of twin girls and increased family size with the birth of a son in 1972. Mary was a “stay-at-home” mom until all of the children were in school.
Her love for children led to a career as a teacher assistant for preschool special needs students in the local public school system until retirement in 1998. Her greatest enjoyment in life was to be with family and friends. An endless organizer led her to be the planner of events that brought people together. She especially liked to play board games, play bridge and solve puzzles i.e. crossword, SUDOKU and jig saw. Not content just to play bridge, Mary taught bridge in the local adult education program for 30 years.
In late 2011 a few forgetful events occurred which did not seem to be a pattern or of concern. However, in 2012, after reading Still Alice, Mary expressed concern about what she felt was a change in her cognition.
Finally, in January, 2014 Mary agreed to an appointment with a neurologist which led to a referral to the Mayo Clinic. An MRI scan and various cognition tests resulted in a diagnosis of Progressive Primary Aphasia (PPA). Over the next four years many of Mary’s skills and interests declined: finding words to express her thoughts, her ability to write and spell (both of which were at an editorial level), ability to remember, etc.
Assistance by family, friends and husband allowed Mary to remain at home until January 2018 when she moved into a memory care facility. Mary entered Heaven December 8, 2018 and her brain was donated to Mayo Clinic for research. The pathology report, rather than confirming PPA, implicated severe Alzheimer’s disease.
Paul Jagemann had just turned 54 in early 2011 when his wife first noticed that Paul was experiencing memory loss. She thought it might have been a symptom of depression following the death of his father the previous October. Paul eventually had to quit his job as an intra-state semi-truck driver because he was becoming more and more anxious about not remembering directions.
After more than a year with visits to multiple doctors, two diagnoses of “pseudo-dementia”, unsuccessful treatment for Hashimoto’s Encephalopathy, and prescription of various anti-anxiety and depression medications, Paul received a “70% sure” diagnosis of Frontotemporal Dementia (FTD). (“Pseudo-dementia” is generally diagnosed when dementia symptoms are attributed to another disorder, most often depression.)
In 2014, looking for support and more information about FTD, Paul and his wife attended the AFTD conference in White Plains, New York. Paul fit some of the criteria for an FTD diagnosis, but Paul’s main symptom of memory loss is not one. His primary care physician leaned toward an FTD diagnosis. But a psychiatrist managing an Alzheimer’s drug study (in which Paul participated) felt Paul was suffering from Alzheimer’s.
It wasn’t until late in the disease that he became more agitated and aggressive. Paul spent the last four months of his life in a nursing home, medicated to the point where he was no longer a danger to himself or those caring for him.
Paul passed away in June 2017 and his brain tissue was donated to the Mayo Clinic in Jacksonville, Florida. Paul’s family not only wanted to find an accurate diagnosis, but felt that Paul’s brain donation would help others trying to find treatments or a cure for these devastating diseases.
The brain autopsy reported a diagnosis of Hippocampal Sparing Alzheimer’s, a subtype of Alzheimer’s that more commonly affects men than women. Symptoms are first visible at a younger age and patients decline at a faster rate than those with typical Alzheimer’s Disease.
David Mamolen was born in Pennsylvania in 1948. He became a chiropractor and opened a practice in Boulder, Colorado.
David began showing some forgetfulness and disorganization in about 2011. In March 2013 he slipped on ice, injuring his lower back. Over time, this bad fall seemed to exacerbate his cognitive issues. He developed some word finding problems. He continued to see patients over the next year despite considerable back pain. But in 2014, he retired.
In 2015, he decided to have back surgery. The anesthesia seemed to prompt a dementia-induced delirium, which slowly subsided. But his cognition worsened.
Eventually he had a thorough neuropsychological exam and brain imaging. He was diagnosed with Frontotemporal Dementia with two of the five FTD variants: behavioral FTD and Primary Progressive Aphasia (difficulty speaking).
He remained at home with his wife Jan as his caregiver. (Jan is a nurse.) This previously kind, caring, mild-mannered man began having bouts of aggression toward Jan. Reluctantly, Jan put him on an anti-psychotic medication that subdued these episodes. David’s speech worsened over time. He required assistance with showering, dressing, and eventually toileting.
In January 2020, Jan enrolled David in a local adult day program, which he loved and gave Jan some respite. But by mid-March when Covid restrictions began, the program closed. His symptoms progressed significantly after that. He became incontinent. He attempted to wander, which required hyper-vigilance from Jan.
Without any respite, Jan hit a wall. A home care agency enlisted one aide, who had a family emergency after two days. The agency did not have a sub.
In August 2020, David fell. There were no injuries but the fall prompted a similar dementia-induced psychosis as he’d had post-back surgery. He was agitated, restless, unable to sleep, and barely ate. He was hospitalized for 9 days. David was then admitted to a memory care facility. After 10 days, he stopped eating and drinking. Hospice was called in and two days later David died on August 31, 2020.
With the assistance of Brain Support Network, his brain was donated to the Mayo Clinic. Pathology results determined that he had advanced Alzheimer’s Disease (Braak Stage VI).
Jennifer Smith was born and raised in Massachusetts, but after earning her PhD in history at the University of Georgia, she lived out most of her adult years in Georgia, where she was a college professor. She began to show minor cognitive and speech symptoms shortly after the loss of her mother in Sept. 2017, but at the time it was assumed they were stress-induced. The symptoms began to worsen, and by spring 2019 she had been diagnosed with logopenic variant Primary Progressive Aphasia, and was forced to leave her teaching career. She was able to function mostly independently until late 2021, when she began to lose motor control and have periods of delusional thinking.
In early February 2022, Jen began having violent muscle spasms, for which two weeks of hospitalization and testing found no clear cause. She passed away, at her home and surrounded by family, on the afternoon of her 62nd birthday. Her brain was sent to the Mayo Clinic in Jacksonville; the autopsy revealed evidence of hippocampal-sparing Alzheimer’s Disease, and showed that she’d had an acute cerebellar stroke.
Suzanne was born in Bethesda, MD in 1937. She was an only child and grew up fairly sheltered. She married Bruce in 1948 and they had three children. Bruce was overbearing and controlling; Suzanne lived in a heightened stage of anxiety most of the time. She looked to Bruce, or later her daughter, when making decisions. Even as a young mother, she repeated her favorite “stories” frequently as if the family had never been told. The couple were daily drinkers, sometimes to excess. Suzanne took up quilting in 1984 and made pieces that won awards.
After Bruce died in 2004, Suzanne seemed to lose her compass. She sold their house and moved down the street from her daughter.
In 2008 (age 71), speech difficulties were noted (saying “wagons” instead of “mountains”, “Happy Birthday” instead of “Merry Christmas”). In 2009 Suzanne impulsively bought a car without consulting anyone. Suzanne’s daughter began to take her to doctors to investigate. In 2009, high calcium was discovered through blood work. The cause was a benign parathyroid tumor, which was surgically removed. Through an MRI in 2010, an aneurysm was discovered, which was surgically coiled. The neurologist saw no evidence of Alzheimer’s at this time. Neither of these medical issues were the cause of her increasing speech difficulties. Suzanne’s behavior became more impulsive and less inhibited.
In 2011, family noticed Suzanne was having trouble with normal routines like cooking and sewing. Suzanne was diagnosed with Primary Progressive Aphasia (PPA) in 2012. Her family moved her to assisted living in 2014 and she was transferred to the memory care unit in 2017.
By 2019, Suzanne had almost no language beyond a word here or there. She was on a pureed diet as she was diagnosed with swallowing difficulties.
In August 2020 Suzanne entered hospice. By March 2021, Suzanne was having trouble with balance. She fell several times and broke her hip which was surgically repaired. She died shortly in May 2021 (age 84). Autopsy reports showed advanced Alzheimer’s, protein build up in the temporal and parietal lobes, and vascular disease of the brain (attributed to high cholesterol).
Doug was born in 1955, the second oldest of five children. He married Melinda in 1979 and together they raised three children. Doug worked in the tool & die industry for over 30 years. He had many interests and hobbies: snowmobiling, hunting, motorcycles, barefoot waterskiing, travel, reading, church life, and fixing just about anything.
At age 55, Doug first described symptoms of a “foggy” brain. While Doug had been a veritable “Mr. Fix It,” such repairs now took him longer than normal, or he was simply unable to figure them out. Over time, Doug lost fine motor skills: buttoning a shirt was first difficult and then impossible. He was painfully aware of his decline.
In early 2014 Doug received a diagnosis of Alzheimer’s Disease (AD), or possibly a frontal variant of AD. That spring, he left his job. September 2016 was the last time Doug barefoot waterskied. His coordination and strength were gone; he lost depth perception and had difficulty reading.
After two years of observation, Doug’s neurologist revised his diagnosis to Frontotemporal Degeneration (FTD). By 2017, Doug was no longer able to accomplish basic life skills: open doors, turn on a faucet, dress himself, eat with utensils, use the phone, or change channels on the TV remote. Large gatherings, like church, caused anxiety. He knew what he wanted to say, but couldn’t get it out. He would often point to his brain and say: “It’s all up there.”
In late 2018 Doug lost weight and began falling more frequently. By December 2019 he stayed awake at night, agitated or pacing. Needing 24-hour care that Melinda alone could not provide, Doug moved into a memory care facility in January 2020. Through it all he retained his awareness and substantial memory, always recognizing his family and friends.
Doug passed away in March 2020 and his brain was donated to the Mayo Clinic in Jacksonville, Florida, for research. Rather than confirming FTD, Mayo’s autopsy revealed severe Alzheimer’s disease, amyloid angiopathy, mild cerebrovascular pathology, and evidence of a small stroke in the occipital lobe.