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.
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 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.
Joseph Nicolazzi, the only child of Italian immigrants, was born in Chicago. Joe spent summers on a farm with relatives while his father travelled back to Italy. 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. He was always detail oriented, hardworking, and friendly. Everyone who met Joseph was immediately impressed with his good sense of humor and warm personality.
Joseph’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 Joseph’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, Joseph was unable to form sentences and, eventually, unable to speak. When Joseph 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. He is deeply missed by all who knew him.
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).
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)
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.
Multiple System Atrophy (MSA)
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.
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 stem 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.
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 March 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 and postural 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 tau protein disorder within the FTD umbrella.
Sandra fell in July 2016 and in early fall moved to a skilled nursing unit. With some assistance she fed herself. Her left foot started to enter a contracted state. 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 Lewy Bodies (typical of Parkinson’s Disease).
Parkinson’s Disease (PD)
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.
Frontotemporal Degeneration (FTD)
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)
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.