Tag Archive | vascular dementia

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

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

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

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

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)

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

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)

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.