Tag Archive | vascular dementia

A Strange Anniversary (and Where “Going Gentle Into That Good Night” Had Its Roots)

Jul11

Today, July 11, 2017, marks a strange anniversary for me personally.

Mama in Better DaysIt is the day that marks the genesis of Going Gentle Into That Good Night (although it would not officially be launched until about three years later) and of the books that I have written about the dementia journey.

Seven years ago today, I got a phone call at 7:15 am that I was expecting. The eight or so months preceding this phone call had been hell for both Mama and me (not all the time, but most of it).

It became apparent in those months that something was clearly wrong. Mama knew it and it scared her, and that made her defensive, hostile, and combative. I knew it, but didn’t know exactly what it was or how and what I could do about it.

Mama lived ready to fight. I lived ready to catch her when she fell, walking on eggshells, trying to keep things as sane, as calm, and as peaceful as was within my power.

These months took their tolls on Mama and me both in very different ways.

Fortunately, that phone call I received early in the morning seven years ago today helped relieve the toll on Mama in ways that she needed. I, on the other hand, still bear a lot of open, gaping wounds that may never heal from the toll it had on me.

Dementias change everybody who is involved and many of those changes, especially for those of us directly in the war zone with our loved ones, can’t be undone.

I’ve had people who’ve never been through any of this and who have not lived my life tell me they know what it’s like and they’ve walked in my shoes. And then the “I know what’s wrong and how you need to fix it because nothing will change until you do this” follows with condemnation and criticism instead of empathy and compassion.

In my opinion, there is nothing is more insulting, insensitive, or hurtful than having this happen to a person. I have to forgive – and I have – because that’s my responsibility. But wisdom must accompany forgiveness and wisdom says that it’s not healthy to keep these kinds of people in any kind of close proximity in our lives.

I’d give my life for any of them. I’d help them with my last breath if they needed it. I love them, but to keep them near or in my life isn’t possible because it’s not healthy for me nor, frankly, is it healthy for them. That time will come, but that time is not now.

My 7:15 am phone call seven years ago today was from a psychiatrist at a local hospital. She said Mama had been transported, after she called 911, at 3:30 am to the ER. The psychiatrist was going to involuntarily commit Mama to a geriatric psychiatric hospital and wanted my permission (I was Mama’s medical power of attorney).

I gave my permission because that’s where Mama and I were in our journey through dementias. I knew that’s where she needed to be, even though it broke my heart to think about it.

The psychiatrist gave me instructions on how to change the commitment to voluntary and told me what to bring for Mama at the psychiatric facility later that afternoon.

I hung up the phone, knowing that our lives had just permanently changed forever. And I got to work immediately adapting to that change.

Within the space of the next two weeks, we had a diagnosis of mid-to-late-stage vascular dementia and Alzheimer’s Disease (I also realized Mama had Lewy Body dementia after her release from the psychiatric hospital because I researched all the things I was seeing beyond the other two types of dementia).

The most harrowing part of all of this was the geriatric psychiatric hospital.

When I was admitted for the first time the afternoon of July 11, 2010 to change Mama’s commitment to voluntary, with me as the responsible party, and to deliver her bag, my immediate reaction was to rescue Mama and take her home (she actually wasn’t there yet and was rolled up in a wheelchair while I was completing her admission, but she didn’t see me and I don’t know, as bad as her psychosis was then, that she would have recognized me anyway).

It was Bedlam.

The stench from urinary and bowel incontinence from the people walking agitatedly or sitting and screaming in wheelchairs around me literally took my breath away.

The intense chaos and high noise level was so uncomfortable for me that I wanted to take Mama and run far, far away.

The deep compassion and empathy for these people, despite all the other stuff, made my heart break even further and it took all I had not to just melt down into a sobbing mess.

But I held it together for Mama. I was there every day at the times I was allowed to visit. I called every morning first thing and every night last thing to make sure Mama either had a good night or was in bed safely tucked away.

Two weeks of that routine and that place left its indelible mark on me. I can barely think of now without shedding tears.

But the two weeks that followed this day seven years ago got Mama on a medication regimen that alleviated many of the symptoms of her dementias and, all in all, made life more bearable and easier for her.

And for that I’m profoundly grateful. It makes everything before and after worth enduring.

Because in the end, it was always about my Mama, and never about me.

The Little Things – Mother’s Day 2017

May14

Mama and DaddyIt’s the little things that I think and dream about now that Mama is gone. Some of them are real and some, those in my dreamworld, are reconfigured to how I wished or hoped they had turned out.

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.
Continue reading →

Transcatheter Aortic Valve Replacement (TAVR) Linked to Increased Risk of Neurological Microbleeds and Vascular Dementia

Mar26

healthy vs failing aortic valveAortic valve failure is a cardiac condition in which the aortic valve fails to open and close properly, negatively affecting healthy blood flow both to the brain and to the body. 

There are two surgical methods currently that can restore normal aortic valve functioning. Continue reading →

Super Bowl 50, Football, and the Everpresent Looming Specter of Dementia

Feb7

Football carries a huge risk of neurological damage and the development of dementiaToday, 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 →

Profiles in Dementia: Woodrow Wilson (1856 – 1924)

Dec6

President Wilson had suffered from arteriosclerosis since 1906 and was showing signs of vascular dementia by 1917.I have been, over the last couple of months, reading a lot of books about the history of World War I – before, during, and after – and the last book I’ve read in this series so far gave intimate and detailed portraits of the four world leaders who were ultimately responsible for the Treaty of Versailles, which may have been the most-poorly and ignorantly (in some cases, deliberately) constructed end-of-war agreement ever made. Continue reading →

The Layperson’s Guide to Neural Disorders That Often Lead to Neurodegeneration and Dementia

Oct15

Normal brain cellMost 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.  

Structure of cell membraneThese 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).

Anatomy of a sphingolipidSpingolipids 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.

Chemistry of sphingolipidIn 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.

A cherry red spot on the macula is a common denominator in Tay Sachs Disease and Niemann Pick disease Type 1Along 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.

 

 

Profiles In Dementia: Winston Churchill (1874-1965)

Oct11

Winston Churchill Vascular DementiaWinston Churchill had a health profile most of his adult life that pointed to the inevitability of cognitive impairment in his later years.

Churchill was an alcoholic (during War War I and II, when the British needed strategic decisions to be made in the middle of the night, an inebriated Churchill was in the thick of things because even drunk he apparently was a better strategist than most of his sober peers).

Churchill also had chronic and worsening hypertension, in part from stress and in part from an unrestrained diet of much rich and artery-clogging food.

As early as 1947, Churchill’s physician, who was complicit in the lies about Churchill’s health all the years he held public office and who propped him up with amphetamines and calmed him down with depressants, noted in his diary that “[Churchill] is no longer fertile in ideas…his once-teeming mind has run dry.”

Beginning in 1948, Churchill began to regularly experience TIA’s in different parts of his brain. Accompanying the mini-strokes, at times, was temporary numbness on one or the other sides of his body, which resolved in a few hours or a few days.

Churchill would also experience the temporary dysphasia in the 30 minutes to an hour afterward that is characteristic of TIA’s, but the language center of his brain was spared permanent damage until his last major stroke in 1953.

With amphetamines and carefully scripted speeches, therefore, Churchill was able, at least from a verbal aspect, to hide the neurological damage and the cognitive decline that those closest to him were aware was progressing rapidly.

But the signs were everywhere in retrospect. Churchill’s speeches and governing were rooted in the first and second world wars. He was glaringly oblivious to post World-War-II politics, issues, and legislation.

He was literally in the-all-too-common vascular dementia time warp of the past and increasingly unaware of the present and had no concept of the future.

With his doctors and his staff carefully concealing his progressing dementia from the public, Churchill managed to limp along in office through continuous TIA’s and three major strokes, until 1955, when he finally resigned because his cognitive impairment and the physical effects of the strokes and dementia were impossible to conceal anymore.

Churchill lived for 10 more years, but vascular dementia was his constant companion and as it progressed, he retreated and regressed until he remembered no one and nothing and it was impossible to see the man he’d been at the zenith of his life.

 

 

Profiles in Dementia: Bill Guthridge (1937 – 2015)

Jun2

Bill Guthridge UNC-Chapel Hill Basketball Coach 1997-2000On May 13, 2015, former University of North Carolina – Chapel Hill basketball coach Bill Guthridge died from heart failure. However, it was Coach Guthridge’s incurable heart condition that led to his development of vascular dementia, and with its progression, his placement for the last several years in a Chapel Hill assisted living facility. 

If Bill Guthridge doesn’t look familiar to you as a UNC-Chapel Hill head basketball coach, there’s a very good reason for that. He was and has been overshadowed and a bit lost in the shuffle of UNC basketball coaches by his lifelong friend, former UNC head coach Dean Smith (1961 to 1997), and current UNC head coach Roy Williams, who was an assistant coach along with Guthridge at UNC from 1978 to 1988.

However, Coach Guthridge served as the perfect replacement as head basketball coach when Coach Smith unexpectantly announced his retirement from the University of North Carolina at Chapel Hill in 1997.

UNC Coach Dean Smith and UNC Coach Bill Guthridge 1970'sCoach Guthridge had been Coach Smith’s assistant coach at UNC for 30 years, so he knew Coach Smith’s style, plays, and strategies inside and out. Coach Guthridge was the right choice to lead the transition to another, younger leader of the famed basketball program at the University of North Carolina.

Unfortunately, it took UNC two tries to find that leader.

The university made a huge misstep when it hired former UNC player, Matt Doherty, a young, untested coach in the league of the Atlantic Coast Conference (ACC) and a 180-degree change from the coaching styles of Coach Smith and Coach Guthridge, as its head basketball coach in 2000, when Coach Guthridge retired.

University of North Carolina Chapel Hill Head Coach Roy WilliamsAfter a three-year disastrous tenure under Doherty, the University of North Carolina hired Roy Williams from Kansas and got the leadership and gravitas that had characterized the UNC basketball program under Coach Smith and Coach Guthridge.

After Coach Guthridge’s retirement in 2003, he and Coach Smith stayed in close contact, visiting each other frequently. Ironically, both coaches developed dementia along the way (Coach Smith died in January 2015 of complications from dementia).

Coach Smith began showing signs of cognitive impairment before Coach Guthridge did. It was profoundly hard for Coach Guthridge to watch his lifetime friend become forgetful and lose the memories they shared together, not just as the architects of a fantastic and highly-ethical college basketball program, but as friends who regarded each other and their respective families as their own.

Coach Guthridge Early Years as UNC Assistant CoachWhen Coach Smith died, Coach Guthridge knew that his friend was gone, but he quickly moved back to their time together when they were younger and dementia had not knocked on their doors yet.

My guess is that Coach Guthridge probably never came back from that place after Coach Smith’s death and I would speculate that Coach Smith’s death may have been the final straw of an increasingly-unfamiliar and disconnected life for Coach Guthridge. Perhaps, at last, somewhere in his mind, Coach Guthridge finally made the decision to retire from this physical life.

Perhaps, at last, somewhere in his mind, Coach Guthridge finally made the decision it was time for him to retire from this physical life.

Coach Guthridge made his retirement official on May 13, 2015. 

 

Profiles in Dementia: B. B. King (1925 – 2015)

May15

B. B. King 2014The blues were born in the Mississippi Delta shortly before the dawn of the 20th Century. The genre, known for its stories of hard times and suffering, originated with African-American sharecroppers who endured long, hot and hard labor picking cotton in the sweltering heat of the summer sun, lived in squalid conditions, and were kept in manipulated indentureship and perpetual debt by never quite making enough money to pay off their bills at local merchants.

While a few blues artists – Robert Johnson, W.C. Handy, Bessie Smith, and Billie Holiday – brought the sound of the blues into the mainstream of music during the first half of the 20th Century, it was not until the late 1940’s and early 1950’s that blues blossomed and hit its stride as a bona fide genre of American music.

Among now-familiar names like Lead Belly, Howlin’ Wolf, John Lee Hooker, Elmore James, and Willie Dixon emerged a young Mississippi Delta bluesman named B. B. King. 

An accomplished guitarist with an one-of-a-kind voice that wrung out every bit of pain, sorrow, and pragmatism that the blues had to offer, King, in many ways, became the face of the blues for a lot of America.

While blues artists had a profound influence on rock – British artists of the 1960’s drew heavily on their influence and vast body of work and groups like the Yardbirds, Cream, and Derek and the Dominos, fronted by Eric Clapton, were the crossroads where blues and rock met and married, producing generations of rock-blues musicians that continue today (listen to Nirvana’s haunting acoustic version of “Where Did You Sleep Last Night?,” and it’s as though you can hear Lead Belly singing along in the background) – in general, they continued to exist, much like jazz musicians, in a popular, but tightly-defined, niche in the landscape of popular American music.

Except for B. B. King. With his famously-named guitar – Lucille – and his showmanship as a guitarist, along with highly-accessible songs, including his eponymous “The Thrill Is Gone,” King managed to gain a large popular audience. 

Young B. B. King B. B. King stayed on the music circuit, performing along the way with artists like Clapton, The Rolling Stones (King opened for them on their 1969 tour), and U2, despite battling diabetes and high blood pressure for decades.

In the last few years, blues fans have consistently pointed out that B. B. King’s performances were erratic at best: King missed musical cues, forgot lyrics, and often went into long, rambling, and random soliloquies while onstage.

B. B. King’s last performance was on October 3, 2014 in Chicago. However, the performance had to be cut short because King wasn’t feeling well enough to continue. He was hospitalized with dehydration and exhaustion.

On May 1, 2015, after two hospitalizations due to complications from diabetes and blood pressure, B. B. King’s website announced that King had entered hospice care at his home in Las Vegas.

On May 14, 2015, B. B. King died. The official cause of King’s death was complications from dementia (vascular dementia).

Sadly, B. B. King’s family has already begun the legal fight over who will control his estate (there are allegations that King’s long-time manager, Laverne Toney, whom King appointed as his power of attorney, mishandled King’s care and money).

It’s a tragic footnote to an incredible life.

 

Profiles in Dementia: Ralph Waldo Emerson (1803 – 1882)

Apr9

Ralph Waldo Emerson and Concord, MA writersI recently read Susan Cheever’s American Bloomsbury, a compelling account of the interwoven lives of the Concord, MA literary giants of 19th Century literature and, with a notable exception (Nathaniel Hawthorne), the core members of both the Transcendental Movement and the Abolition Movement that saw John Brown as a heroic martyr.

This group of closely-interconnected writers included, among others (Edgar Allan Poe passed through as did Walt Whitman and Herman Melville), Emily Dickinson, Louisa May Alcott, Henry David Thoreau, Nathaniel Hawthorne, and Ralph Waldo Emerson.

Despite all my college studies in English Language and Literature, I have never been able to really like – or even endure – most 19th Century American literature. (Yes, I’m American and, yes, I really loathe this period of American literature for the most part.)

My three exceptions are the three writers in this Concord, MA conclave who never quite fit in with the mindset and the groupthink of the rest of the writers: Nathaniel Hawthorne, Edgar Allan Poe, and Emily Dickinson.

I won’t bore you with all the reasons – and there are many – why I like these three writers and don’t like the rest.  If in another lifetime I decide to start a literary analysis blog, a post with those reasons will definitely make its appearance there.

Ralph Waldo Emerson Dementia and AphasiaSo, although I read my required – and no more – share of Ralph Waldo Emerson, I didn’t know much about him as a person. This book shed a lot of light on that.

Emerson, it turns out, was the financial support for these writers and their families, some for all their lives (Henry David Thoreau) and some until they published successfully (Nathaniel Hawthorne and Louisa May Alcott).

Emerson was older than most of the other writers and was treated by them as a father figure and a mentor. Emerson was intelligent (a graduate of Harvard), thoughtful, and a practical intellectual who guided this group in both their literary endeavors and their personal lives.

So I was surprised to learn that Emerson developed dementia (Cheever, perhaps because she has not dealt with dementia in a more personal way, made the common mistake of calling it Alzheimer’s Disease, which is only one type of dementia), accompanied by aphasia during the last decade of his life.

Because aphasia was a key feature of Emerson’s neurological degeneration, it’s very possible that he suffered from vascular dementia, since aphasia is very often a feature of that type of dementia.

One of the devastating aspects of aphasia as it worsened for Emerson was that he had supported his family and, to one degree or another, many of the other Concord writers for decades by conducting a rigorous yearly schedule of paid speaking engagements around the country. Once his ability to communicate coherently was gone, Emerson’s income was gone as well.

In the last couple of years of Emerson’s life, he forgot most of the people and things around him in Concord, MA. Louisa May Alcott, whom Emerson had known for 42 years, watching her grow up from a nine-year-old spunky girl into an equally spunky woman, became a stranger to him, as did his family. 

The Forgetting PBSHowever, and this is fortunate, in the acclaimed PBS documentary, The Forgetting, Emerson is quoted as having remarked, when he was well into the disease, to a friend that, “I have lost my mental faculties but am perfectly well.”

I plan to make “Profiles in Dementia” a regular feature on this blog since I’ve got a lot of stories like these that I’d like to share and will give another dimension, in terms of personal interest, to this blog.

So, if you like this one and you like the idea, let me know by your likes and comments.

This blog’s for you, so you have a voice in what kinds of things are included here.

I appreciate you reading and hope that you will find the extensive body of information here helpful in your journey with dementias and Alzheimer’s Disease, whether that’s as a caregiver for loved ones or it’s you that’s walking the journey yourself.