Barbara Louise Foraker, 73, passed away during the early morning hours of 21 October 2017. Natural causes, stemming from her ongoing battle with Lewy Body Dementia, contributed to her death. She endured a rapid and unexpected decline in her health over the past month, after experiencing a fall. Continue reading
As time passes between my parents’ deaths, I find more and more Daddy and Mama are together, the two of them and sometimes with my sisters and and sometimes just with me, but we all seem to be younger, when our lives were more together than they are now and we shared the little things that glued us together.
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 Society, Awakenings, Good 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.
It 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.
This is the second part of a three-part series that looks at the latest research into Lewy Body dementia (click here to read Part 1 of this series). My goal in presenting this research is to try to make it understandable and accessible so that we as caregivers of our loved ones who have Lewy Body dementia can have better insights into what is happening neurologically and why it is happening.
You might ask why this matters. Perhaps the vast majority of the people who subscribe to this blog and follow it on the various social media venues, yet seldom ever actually read the posts, don’t really care about the details, preferring instead to read pithy or “nobody knows the trouble I’ve seen” posts that decry or moan about the day-in-day-out behaviors of these neurological diseases that always end up asking “why?”
The irony never escapes me that many of those people are subscribed to and/or follow this blog which, along with the two books I’ve written, not only gives the “whys,” but also gives practical application information about how to address and respond to the things they and their loved ones are experiencing. Continue reading
Today, February 7, 2016, the 50th Super Bowl game in NFL (National Football League) history will be played by the Carolina Panthers and the Denver Broncos. Therefore, it is appropriate to discuss the other dark and dangerous side of this football game – and all the ones played before and all the ones that will be played after – before it is played.
Super Bowl games have become extravagant and lavish productions in the last ten years or so, intended to bring into the audience people who normally either don’t have interest in the game or don’t normally watch football. Super Bowl games also represent an obscenely huge financial windfall for the NFL and for advertisers with enough money to pay for the coveted and outrageously expensive advertising spots during the game. Continue reading
In my profile of William Shakespeare’s character, King Lear, from the play of the same name, it was clear that Lear was suffering from dementia and, most probably, Lewy Body dementia.
So I thought I’d share my review of The Year of Lear: Shakespeare in 1606 by James Shapiro to get a wider perspective on the year that saw Shakespeare give a title character in one of his plays many of the behaviors and symptoms of advanced cognitive impairment and Lewy Body dementia.
This book explores how the world around Shakespeare (beginning with the Gunpowder Plot on November 5, 1605 – now commemorated annually in England as “Guy Fawkes’ Day” – which had deep political and religious roots) during the early part of the reign of King James I, with an especially tumultuous year in 1606, influenced his writing that year.
Much of what was going on politically, socially, and emotionally in England at the time is reflected in the lines of King Lear, Macbeth, and Antony and Cleopatra, all of which are among Shakespeare’s tragedy plays and all of which Shakespeare wrote in 1606.
The Gunpowder Plot in late 1605 triggered much of the political and religious climate that overshadowed 1606. The plot, engineered by English Catholics who feared greater persecution – they got it – and more “do-or-die” pressure to abandon their Catholicism – a prescient fear even they didn’t realize the extent or depths of of James I – underscored the continued intense subterranean battle between England’s Catholics and Protestants.
While the plot was thwarted by the usual treachery and intrigue (it would have obliterated much of the heart of London government – buildings and people – and would have significantly changed the overall physical landscape of London), James I – as King of Scotland first, he was viewed as an interloper by much of the English population – reacted ferociously with a wide net that touched every English citizen, including Shakespeare, determined to have his will – the union of Scotland and England under one umbrella – no matter what he had to do to make it happen.
It seems James I did everything he could to alienate his English subjects, including moving, by disinterring, the graves of the royals in Westminster Abbey.
Most notably, he disinterred Elizabeth I and buried her on top of Mary I (“Bloody Mary,” the religiously-fanatical daughter of Henry VIII and Catherine of Aragon, whose main accomplishment on the throne was a religious pogrom against Protestants, of whom Elizabeth I was one), then moved his mother, Mary, Queen of Scots (one of Elizabeth’s staunchest rivals for the English throne), into Elizabeth’s grave and giving her a greater position of status in the cemetery.
Shakespeare, who lived in the heart of London most of the year, had a front row seat to all of this as part of the King’s Men, who were patronized by the crown, as they had been during Elizabeth I’s reign.
1606 was a year of fear (the plague hit London particularly hard during 1606, adding to the political and religious fear that was rampant in the city) and division (political and religious) and nostalgia (although by the end of her long reign the English believed Elizabeth I’s rule had become stagnant, the actions of James I made them long for her “good old days”) that punctuated the year.
I highly recommend this book even for people who may not know or really appreciate the incredible talent and acute, heart-of-the-matter insight that Shakespeare brought as a writer to his plays. Perhaps it will be a catalyst to go and read at least these three plays through the eyes of 1606.
In 2015, a significant amount of research was dedicated to better understanding what I believe is the least understood of the major types of dementia. That type of dementia is Lewy Body dementia.
This post will will begin to summarize the findings of this latest research in way that is both accessible and will hopefully better educate us as caregivers of loved ones with Lewy Body dementia. Continue reading
Most dementias – Lewy Body dementia, vascular dementia, early-onset dementias, alcohol-related dementia, and Alzheimer’s Disease among them – appear seemingly suddenly as primary and distinct neurodegenerative processes without definitive causes (except in the case of genetic inheritance, which primarily occurs in rare dementias like Corticobasal Degeneration, Progressive Supranuclear Palsy, and Fatal Familial Insomnia and some of the early-onset dementias).
However, there are a group of neural disorders, which are caused by the same genetic mutation that affects lipid storage in the body, that often have dementia as a secondary symptom as the diseases progress.
These neural disorders (all these have sphingolipid metabolism dysfunction in common) – which include Niemann-Pick disease, Tay Sachs disease, and Gaucher disease – are characterized by by increased levels of a particular type of sphingolipid.
There is no cure for these neural disorders and they are all fatal (in many cases, during childhood).
Spingolipids are the biological product of a chemical process that creates a protective layer on nerve cell membranes and ensures proper – and protective – cell signaling and are critical to optimal brain function.
The genesis of sphingolipids are long-chain – also known as sphingoid – bases that normally have a length of 18 carbons, although they can also have lengths of 16 or 20 carbons. The length of long-chain bases is determined by serine palmitoyltransferase (STP), a multiprotein enzyme.
In neural disorders like Niemann-Pick disease, Tay Sachs disease, and Gaucher disease, a mutation (known as Stellar) in one of the proteins that makes up STP creates an abnormally high number of 20 carbon long-chain bases, which dramatically interferes with sphingolipid metabolism.
This causes neurodegeneration to occur. In all these neural disorders, much of the neurodegeneration begins soon after birth.
In Tay Sachs disease, neurodegeneration of the brain and spinal cord begins at about six months of age. The average lifespan is four years.
Gaucher disease has three subtypes.
In Type 1 Gaucher disease, symptoms, which include anemia, bone deterioration, and liver and spleen impairment, are non-neurological and do not materialize until middle age. The average life expectancy for Type 1 is 68 years.
Type 2 and Type 3 Gaucher disease are both neuropathic forms of the disease. Neurodegenerative symptoms include abnormal eye movements, seizures, and systemic brain damage.
In Type 2 Gaucher disease, the onset of symptoms is within three to six months of age. Deterioration is rapid; the average life expectancy is about two years of age.
Type 3 Gaucher disease is a slower onset and involving version of Type 2. The average onset of neurological involvement is late childhood into adolescence. Life expectancy ranges from the mid-twenties to, in extremely rare cases, the early forties.
Niemann-Pick disease has four types: Type A, Type B, Type C1 and Type C2.
Niemann-Pick disease Type A occurs in infants. Symptoms include enlargement of the liver and spleen (around three months of age) and a failure to thrive during the first year of life. At one year, widespread damage to the lungs occurs, and there is a progressive loss of neurological and motor function.
Along with Tay Sachs disease, Niemann-Pick disease Type A also has a common eye deformity consistent with neurometabolic disease, known as a cherry spot, that occurs within the macula and is often what initially identifies the two neural disorders.
While most children born with Niemann-Pick disease Type A die in infancy, a few may live as long as four years.
Niemann-Pick disease Type B includes most of the same symptoms as Type A (motor skills are not usually affected), but the onset of symptoms is during adolescence. Most people with Niemann-Pick disease Type B survive into adulthood, but mortality rates climb dramatically between twenty and thirty years of age.
Niemann-Pick disease Type C (C1 and C2 are caused by different gene mutations, but the symptoms are the same) is characterized by severe liver disease, severe pulmonary infections, progressive neurodegeneration, and increasing difficulty with speech and swallowing that deteriorates completely over time.
The onset of Niemann-Pick disease Type C can be at any age, but it is most commonly seen by the age of five. The life expectancy with this type is under twenty years of age when symptoms appear in childhood. When symptoms appear later, the life expectancy is ten to twenty years after symptoms begin.
William Shakespeare, the playwright, was one of the most intuitive and astute observers of the human race. A careful reading of his body of plays – especially the histories and the tragedies – show an author who intimately understood human nature and human folly at their very core manifestations.
In King Lear, one of Shakespeare’s most gut-wrenching plays, Shakespeare gives us an in-depth look at what dementia – and, most likely, based on the symptoms, Lewy Body dementia – looks like in action in his portrayal of King Lear.
From a big-picture standpoint, the play shows in close detail how dementia can destroy a family (and a kingdom), and it shows how family dynamics can hasten the destruction. It also shows how dishonesty with our loved ones with dementia is never acceptable.
The summary of King Lear is fairly straightforward. King Lear, a monarch in pre-Christian Britain, who is in his eighties and aware of his own cognitive decline, decides to abdicate the throne and split the kingdom among his three daughters, with the promise that they will take care of him.
The first sign of Lear’s dementia is his irrational criteria for how he’s going to decide which daughter gets the largest portion of the kingdom: not by their abilities, strengths, rulership experience, but by which one professes the greatest love for him.
His two oldest daughters are duplicitous and try to outdo each other with their professions of love for their father (they don’t love him, but they want the lion’s share of the kingdom).
King Lear’s youngest daughter, who genuinely loves her father and who is his favorite, gets disgusted with the whole thing and refuses to play the game.
King Lear, in a sudden fit of rage, then disowns his youngest daughter completely. When one of her friends, the Earl of Kent, tries to reason with the king, King Lear banishes him from the kingdom.
King Lear’s youngest daughter then marries the king of France and leaves King Lear in the hands of his two devious older daughters.
Both daughters are aware of King Lear’s vulnerability because of his cognitive decline and are intent on murdering him so that they can have everything without the responsibility of having to take care of him. They treat King Lear horribly in the process of formulating their scheme to end his life and be rid of him.
The youngest daughter comes back from France to fight her sisters, but loses and is sentenced to death instead.
While she is awaiting execution the two older sisters fight over a man they both want. The oldest sister poisons the middle sister, who then dies.
The man the two sisters were fighting over has been fatally wounded in battle and he dies (but he reverses the execution order of the youngest sister before he dies). After his death, the oldest sister commits suicide.
Meanwhile, the youngest sister is executed before the reversal order reaches the executioners. And King Lear, upon seeing his youngest daughter dead, dies too.
Woven throughout the plot are signs that King Lear has dementia, that he knows something is cognitively wrong, and we watch him actually go through the steps of dementia throughout the play.
King Lear exhibits deteriorating cognitive impairment, irrational thinking, sudden and intense mood changes, paranoia, hallucinations, and the inability to recognize people he knows.
Lewy Body dementia seems to be evident in King Lear’s conversations with nobody (he thinks he sees them but they aren’t there) and the sleep abnormalities that are brought out in the play.
A few poignant lines spoken by King Lear give us a glimpse:
“Who is it that can tell me who I am?”
“O, let me not be mad, not mad, sweet heaven
Keep me in temper: I would not be mad!”
“I am a very foolish fond old man,
Fourscore and upward, not an hour more or less;
And, to deal plainly,
I fear I am not in my perfect mind.”
“You must bear with me:
Pray you now, forget and forgive: I am old and foolish.”
Everyone around King Lear knows he’s not himself, including his deceptive daughters, who note after he disowns his youngest daughter, how bizarre his behavior was toward someone he loved so much and how quickly his temperament changed. King Lear see
As the play progresses, King Lear’s dementia continues to be revealed in his frequent rages against fate and nature, in his disregard for personal comfort or protection from the elements, and in his eventually having fewer and fewer lucid moments in which he recognizes people and knows who he is.
If you haven’t read King Lear in a while or you’ve never read it at all, it is an entirely different experience to read it now with the knowledge of dementia as a backdrop. It’s even more tragic than we even imagined.
In this tenth installment of chapter excerpts from the book You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease, we look at the ninth step in the journey through dementias and Alzheimer’s Disease.
This post includes an excerpt from chapter 9, which gives extensive information on how to acknowledge, recognize, and respond to the ninth step in the journey through dementias and Alzheimer’s Disease: balance, stability, and falls.
This chapter discusses all of the reasons that the neurological damage of these diseases affect balance, stability, and lead to an marked increase in fall risks and actual falls.
This is the ninth step in the journey through dementias and Alzheimer’s disease.
This chapter also discusses practical, real-time, and loving ways we as caregivers should respond and help our loved ones as we negotiate this step in the journey.
This series begins with the forward to the book and an explanation of why I wrote this book and why you should read it.
The steps in the journey through dementias and Alzheimer’s Disease are presented sequentially in the order in which they actually appear in the course of these neurological diseases.
There are no other books that literally walk through each step in sequential order as they emerge in the journey through dementias and Alzheimer’s Disease.
Additionally, there is no other book that discusses:
- The process we as caregivers acknowledge each new step – there is an acceptance period that we have to go through
- The process we use to guide ourselves and our loved ones with dementias and Alzheimer’s Disease through the recognition phase of each step
- The concrete, loving, and practical information on how we should respond and how we can help guide our loved ones’ responses
These are the things that make You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease unique and stand alone in the plethora of books about dementias and Alzheimer’s Disease.
Excerpt “Chapter 9: ‘I Keep on Fallin’”
“While many of our loved ones with dementias and Alzheimer’s Disease are in good shape physically when these diseases begin to manifest themselves, they eventually reach this step of the journey where there is a great risk of falling. Attached to this risk is the possibility of broken bones – especially hips, which may be so badly damaged that our loved ones become confined to wheelchairs or bed for the rest of their lives – and head injuries, which can be fatal.
The reasons that our loved ones are increasingly susceptible to falls are:
Gait changes are common as dementias and Alzheimer’s Disease progress in our loved ones. One of the most characteristic gait changes is shuffling. This is especially pronounced in our loved ones who have Lewy Body dementia and Parkinson’s Disease, but it becomes a feature of all dementias and Alzheimer’s Disease by this step of the journey.
Shuffling is when our loved ones don’t pick their feet up off the floor to take steps, but instead slide them across the floor to move forward. One of the inherent dangers in this is catching the front part of shoes on the floor – especially carpet – and falling forward.
Shuffling can be both a result of neurological impairment – not remembering how to take normal steps to walk – and muscle weakness from lack of use.
The most important thing we can do for our loved ones with dementias and Alzheimer’s Disease to help minimize shuffling is to have a physical therapist on our care teams to help regain muscle strength and work on gait normalization. Additionally, if possible, we should be helping our loved ones maintain muscle strength and walk with them daily encouraging them, both by example and by instruction, to use a normal stepping gait to walk.”