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Profiles in Dementia: Charmian Carr (1942 – 2016)

Charmian Carr as Liesl in 1965's "Sound of Music"Charmian Carr was born in 1942 to parents who were performing artists (her mother was a vaudeville actress and her father was an orchestra leader) and she followed in their footsteps in her early life, landing the role of Liesl Von Trapp at 21 in Sound of Music in 1965.

Although Carr had a lauded role in the classic film and the promise of a good career as an actress – her only other film was with Anthony Perkins in 1966’s musical Evening Primrose – Carr made the choice to pursue a more private life.

She married, raised two daughters, and ran her own design business.

However, Carr happily embraced her role in the Sound of Music throughout her life, writing two books – Being Liesl and Letters Charmian Carrto Liesl – about the lasting effect of her seminal character on her own life and participating in singalong performances of the Sound of Music soundtrack at the Hollywood Bowl.

Before a 2005 performance at the Hollywood Bowl, Carr
commented: “I tell people that they should consider singalong Sound of Music like going to a therapist. It’s just a kind of therapy. They can move around. They can dance and talk back to the screen. They can skip their appointment with the shrink that week.”

Carr died on September 19, 2016 at the age of 73 from an undisclosed rare form of dementia.

 

Profiles in Dementia: Gene Wilder (1933 -2016)

Gene Wilder as Willy WonkaGene Wilder was a comedic actor best known for his performances in movies such Willy Wonka and the Chocolate FactoryBlazing SaddlesStir CrazyYoung Frankenstein, and The Producers.

Wilder got his start in acting in 1961 in off-Broadway productions, but his acting career began to take off in 1967 when he landed a role in Bonnie and Clyde, which starred Warren Beatty and Faye Dunaway.

Wilder’s career peaked in the 1970’s, as he became a household name after masterfully capturing the essence of the title character in 1971’s Willy Wonka and the Chocolate Factory.

Wilder’s performance in Willy Wonka and the Chocolate Factory caught the attention of Mel Brooks, a filmmaker well-known for making movies that are farces or comedic parodies (perhaps because I’m too much on the serious side of things, I have never really gotten Brooks’ movies and don’t find them appealing, but they are very popular), and Wilder was featured in starring roles in the string of hit movies that Brooks made in the late 1960’s and throughout the 1970’s.

Wilder’s last movie role was in 1999, after which the actor began a more private life, with rare cameos in television shows and interviews (the last of which was in 2008 with Alec Baldwin in a Turner Classic Movie biography entitled Role Model).

According to statement from Wilder’s nephew, Wilder had been officially diagnosed with Alzheimer’s Disease in 2013, but had been showing increasingly more obvious behaviors and symptoms of the neurological disease for several years before that.

There have been many critics of Wilder’s desire to keep his diagnosis private because the critics believe that celebrities with a dementia diagnosis will bring more awareness about dementia and will spur more public and political action.

I strongly disagree with the critics and I support Wilder’s desire to keep his diagnosis private.

There is plenty of information – this blog and the books I’ve written with in-depth and practical information about dementia (what it looks like, how to travel through the journey day-to-day with our loved ones, and invaluable information on resources to best facilitate that journey), in addition to other blogs and books that focus on certain aspects of dementia or are devoted to a certain angle of dementia awareness – available to raise awareness.

I also believe that each person, and their families, should have the discretion to choose whether to make a dementia diagnosis and journey public or private.

In my mom’s case, while she was alive, I kept her diagnosis confined to a small group of people whom she and I were close to and who would want to know. I don’t really know what Mama would have chosen (it’s not a question you can really ask), but I knew I wanted to protect her and to maintain her dignity, so I made that choice with no regrets.

Gene Wilder Alzheimer's Disease

It was only after Mama’s death that I chose to make her dementia public, but only because I knew that our journey could help other people and that Mama would have supported that. I haven’t ever given all the details of our journey and I never will (some things just need to stay private).

Gene Wilder died at the age of 83 from complications of Alzheimer’s Disease on August 29, 2016.

 

Profiles in Dementia: Coach Pat Summitt (1952 – 2016)

Coach Emeritus Pat Summitt, University of Tennessee (Knoxville) Women's Basketball CoachCoach Pat Summitt, who coached the University of Tennessee (Knoxville) women’s basketball team for 38 years until her retirement in 2012 after she announced that she had been diagnosed with early-onset Alzheimer’s Disease, was known for her fair, but ethical, disciplined, and meticulous coaching that emphasize hard work saw Coach Summitt experience unparalleled success on and off the court, but more importantly, saw the efforts of her leadership and coaching develop in her basketball players the same kind of work ethic, fairness, ethics, discipline, and meticulousness.

In stark contrast to many players in men’s college basketball players who typically don’t graduate from college, but instead go to the NBA in their sophomore or junior years, Coach Summitt held a 100 percent graduation rate for all of her players who completed their eligibility at the University of Tennessee.

Continue reading

Profiles in Dementia: Muhammad Ali (1942 – 2016)

Muhammad Ali (1942-2016)Muhammad Ali is remembered as one of the greatest boxers of all time. His physical strength and abilities, his agile footwork in the ring, and his witty and intelligent – and sometimes boastful – running commentaries about himself and his opponents made Ali compelling and appealing to a much wider segment of the population than just those who liked to watch boxing.

But as Ishmael Reed so poignantly points out in his New York Times article about Ali, none of this came without a cost. A very high cost. An eventually fatal cost. Continue reading

Profiles in Dementia: Harper Lee (1926 – 2016)

To Kill A Mockingbird was Alabama author Harper Lee's only published novelNelle Harper Lee wrote a seminal work of fiction in the 20th century: To Kill A Mockingbird. It would be the only published work the Alabama author would give to the world, but it was more than enough.

The book was ground-breaking in so many ways. Published at a time (1960) when the eyes of America, and indeed the world, were focused on civil rights in the South, where the shameful ugliness of racism was brought front and center into the living rooms of millions of people and its dastardly proponents – Strom Thurmond, George Wallace, and the Ku Klux Klan, to name just a few – spewed their vitriol in thick-tongued, ignorant voices that I sincerely hope (a lot of this happened, including this book, before I was born) embarrassed and discomfited most Southerners, To Kill A Mockingbird showed a decent South, a fair South, a kind South, and a principled South in stark contrast to what was played out as the South in the rest of the media. Continue reading

Profiles in Dementia: Ronald Reagan (1911 – 2004)

Ronald Reagan Younger PortraitFor reasons that I cannot logically remotely fathom, except that perhaps we humans are highly susceptible to creating sanitized and palatable versions of our recollections of “the good old days,” which in fact were never as good as we remember them to be and may have been downright horrible, United States President Ronald Reagan is continually held up as a hero and a paragon of virtue, wisdom, and good governing.

The reality then and now could not be further from the truth in any of these categories.

Even before Ronald Reagan was president, his mental status was a source of concern. He often made contradictory statements, had frequent difficulty remembering names and people, and regularly seemed to be prone to absent-mindedness.

I was very young when President Reagan came into office, but I have clear recollections of how bad the economy was during his tenure (President Reagan was the “trickle down economics” president, promoting the pie-in-the-sky idea that if the United States gave financial preferences to the very wealthy, then they would in turn create jobs and juice up the economy down through the poorest people in the nation) and how much wrong-doing occurred during his presidency.

Don Henley’s “End of the Innocence,” depicting pervasive corruption, dishonesty, greed, and despicable behavior that touches every part of life and written during President Reagan’s presidency has become, in my mind, the most honest and enduring description of the United States, from its politicians to its businesses to its people, has a couple of verses that deeply resonate with me every time I think of President Reagan’s years in office:

“O’ beautiful, for spacious skies
But now those skies are threatening
They’re beating plowshares into swords
For this tired old man that we elected king

Armchair warriors often fail
And we’ve been poisoned by these fairy tales
The lawyers clean up all details
Since daddy had to lie”

Henley’s song refers to the Iran-Contra affair, which, in more detail than ever before, exposed the truly despicable and seedy underbelly of how the American government, military, and intelligence services have always manipulated, by whatever means were deemed necessary (the end justifies the means), world geopolitics to attempt to give the United States the upper hand in outcomes.

It is very likely that the real principles – Colonel Oliver North threw himself on his symbolic sword as the fall guy when it came to light – in this scandal took advantage of  President Reagan’s already-apparent cognitive impairment.

Evidence that President Reagan was already into his progressive slide into dementia includes his often-confused testimony during the Iran-Contra hearings and the unprecedented number of times, with obvious confusion on his face, he said “I don’t recall.”

President Reagan had already begun his descent into dementia when he took office in his first term as the president of the United StatesWhile this statement is a standard in legal defenses, what made President Reagan’s more than a legal maneuver was that it was clear that he really didn’t recall much at all.

This year, a study was done by researchers at the University of Arizona on President Reagan’s speech patterns during his eight years (1981 – 1989) as president of the United States.

What the researchers found were subtle changes during those eight years that revealed the tell-tale signs of the change-in- communication step of the journey through dementias and Alzheimer’s Disease.

These included searching for words, substituting generic terms like “thing” for specifics President Reagan could not remember, and a decreasing range of vocabulary as his time in office progressed.

Although President Reagan’s dementia was not publicly announced until 1994 – a move I believe was calculated to give enough time after his presidency to remove suspicion that President Reagan had dementia while in office – it has since become clear that his dementia gave the people around him the leeway to set in motion the kind of governing (and it does nobody except people and institutions with a lot of money and a lot of blackmail-type secrets any favors, while getting sleazier and sleazier by the minute) we live with and take for granted as “normal” today.

President Ronald Reagan died on June 5, 2004.

Profiles in Dementia: Franklin D. Roosevelt (1882 – 1945)

Franklin D. Roosevelt experienced cognitive impairment from vascular dementia the last several years of his presidency of the United StatesWhile it is well known now that President Franklin D. Roosevelt suffered from partial paralysis from polio (he was stricken with the disease when he was 39 years old) that was hidden from the United States during his twelve years as president of the country, what is hardly known is that in the last several years of his life, President Roosevelt’s diastolic hypertension grew significantly worse and he began suffering symptoms of vascular dementia as a result.

Beginning in 1939, President Roosevelt was diagnosed with hypertension, with blood pressure readings averaging between 180/100 and 190/110.

The president’s medical team was never able to get his blood pressure consistently lowered, and, in fact over the next six years, it was more normal for President Roosevelt’s blood pressure to be in the 230/120 to 300/140 range when it was checked (which, surprisingly, given his condition, was not often).

Before President Roosevelt ran for his last term, signs of vascular dementia in terms of cognitive impairment had already materialized.

In addition to the president’s other worsening health problems, he was in no shape for and never should have run for a fourth term as president of the United States.

However, despite the evidence that everyone around him saw and was well aware of, no one stopped President Roosevelt’s last election and no one questioned the wisdom of having someone with cognitive impairment manage the last days of World War II.

History has shown that President Roosevelt’s cognitive impairment was fully apparent at the Yalta conference with Joseph Stalin and Winston Churchill in February 1945 (two months before President Roosevelt died after suffering a massive cerebral hemorrhage in Georgia).

President Roosevelt's cognitive impairment was a deciding factor is how Yalta turned out and what the world looked like geopolitically for the next 44 yearsMany of the factors that should have been addressed with Stalin and the Soviet Union at this conference by President Roosevelt (as the leader of the world’s strongest nation, which the United States emerged as in World War II) were not.

These critical and strategic omissions/concessions directly contributed to the vise-like grip that the Soviet Union – and the spread of Communism – had on eastern Europe after the war and the ensuing Cold War that lasted for almost 50 years.

It is clear in retrospect that President Roosevelt’s dementia played a crucial role in how the geopolitical landscape of the world shaped up, detrimentally, for the next half century.

President Roosevelt died at the age of 63 in Warm Springs, Georgia on April 12, 1945. His last known words were “I have a terrific headache.” He lost consciousness and was dead within two hours.