Profiles in Dementia: Robin Williams (1951 – 2014)

Robin Williams in "Good Morning, Vietnam"Robin Williams was a man of great intellectual depth and many diverse talents. He burst on the scene as the quirky, but engaging Mork on the TV series Mork and Mindy in the late 1970’s. It was clear even then that his talent was bigger than the small screen could contain, and he quickly made the transition to the big screen in films that brought him great acclaim (Dead Poet’s SocietyAwakeningsGood Morning, Vietnam, and What Dreams May Come, to name a few) as a serious actor, writer, and producer. 

Williams, a graduate of Julliard, began his career as a stand-up comedian. His style was unique: rapid-fire, insightful, and always extremely funny with the undercoating of serious truths lying just beneath the humor.

Early in Williams’ career, he battled the same demons of drug and alcohol abuse that seem to disproportionately haunt the most talented among us mere mortals. He successfully overcame both, but I am inclined to believe that the years of substance abuse were a contributing factor to his development of Lewy Body dementia in the couple of years of his life.

Williams’ widow, Sharon Schneider Williams, recently wrote an essay (published in the official journal of the American Academy of Neurology) describing her husband’s last year as Lewy Body dementia consumed his brain.

Robin Williams in his last year of lifeIt is hard at times to read (I saw many things there that I saw in my own mom’s Lewy Body dementia), but it captures the essence of Lewy Body dementia in real time in a way I have not seen described before.

Robin Williams, unable to continue to humanly fight the unseen, but increasingly-threatening terrorist that had permanently taken his brain hostage, took his own life on August 11, 2014.

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.


The Neurological Legacy of 9/11 on First Responders: PTSD, Cognitive Impairment, and Dementia

9/11/01 Collapse of Tower 2 of the World Trade CenterWhile most reports on the long-term health effects on first responders to the terrorist attack on September 11, 2001 at the World Trade Center in New York City have focused on physical damage – increased rates of severe respiratory conditions and incidences of cancer – often leading to premature death, it has only been within the last month that the long-term neurological effects have been examined and documented. Continue reading

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.


Four Years Gone: Grief, Loss, and the Paradox of Time That Seems Both Immediate and Eternal

mama-october-2010Today (August 14, 2016) marks four years since Mama died. It was a Tuesday then. At 5:50 pm, Mama took her last breath.

She went into what would be her death sleep around 1 pm on Sunday, August 12, 2014, with her last words of “I guess they’re going to throw me out now,” suffering, I think, the final heart attack that led to her death.

I assured her that I was not throwing her out, that she was home, and I loved her. It took me several months and writing Fields of Gold: A Love Story before I realized that Mama was back at nursing school at East Tennessee State University, unable to follow all the instructions she was given because of a congenital hearing loss, about to be dismissed from the program because she could not hear the doctors when her back was turned to them (she compensated for her hearing impairment by masterfully reading lips, even with hearing aids, most of her life). Continue reading

Book Review of “When I Married My Mother: A Daughter’s Search for What Really Matters – And How She Found It Caring for Mama Jo” by Jo Maeder

When I Married My Mother: A Daughter's Search for What Really Matters - And How She Found It Caring for Mama JoWhen I Married My Mother: A Daughter’s Search for What Really Matters – And How She Found It Caring for Mama Jo by Jo Maeder
My rating: 5 of 5 stars

Reading this book this time of year with my dad’s birthday last week and the fourth anniversary of my mom’s death as our caregiving/receiving journey together ended was probably not the best idea I’ve ever had.
Continue reading

The Ever-Increasing Connection Between Diabetes and Dementia

3D Image of Brain in ColorGoing Gentle Into That Good Night has and will continue to discussed the connection between lifestyle choices and an increased risk of developing dementia. Some of these lifestyle choices include alcohol abuse and addiction, prescription drug use, abuse, and addiction, illegal drug use and addiction, and “smart drug” use and abuse.

So maybe you’re reading this and thinking, “Well, I don’t make any of those risky lifestyle choices, so I don’t have to worry about neurological damage and developing dementia.” And you would be wrong. Continue reading