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aalt-ctrl-del · 4 years

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something that does disturb me about some of these corona virus self-reports, is a small account given by those that have had corona virus or know someone who went through corona virus. Third-party reports, with minimal credibility, but there is a disturbing narrative I review, that comes from a common attribute. There is a dismissive often casualness to these reports, which comes from someone who has done minimal research into the significance.

A somewhat frequent trend is that those young people, who have the minimum side-effects (such was mild aches and soreness in the throat, sometimes headaches) go on to ‘recover’ from corona virus. Then go on to say, “Taste or the sense of smell has not returned. At all.”

To the “it’s just a flu” crowd, this is dismissed as typical allergy or side effects of a mediocre cold. But the account may have a more unsettling significance.

I have a family member, who several years prior, suffered a very mild stroke. A mild stroke can be missed, because it does not have outward significance to those who knew the individual. And, we only put together the context of this stroke and it’s impact on her health, years later, when she displayed early onset dementia. The stroke was only made knowledge years following, after a MRI scan revealed the mild onset of neuro damage that matches to a stroke pattern, though it was not outwardly visible. Though this family member, aware that her mind was damaged but not comprehending how, made the efforts to square away essential assets and put her future care in order. There is more to this story, but it is personal and not relevant to the corona virus tangent I am going through.

Now, of this early onset dementia, our first clue was that her sense of smell and taste was affected. Bear in mind, no neurological discrepancies were visibly apparent at the time - and this medical narrative comes before a time when resources for dementia or Alzheimer's was made readily available. The plot we built around our ailing individual, we had to piece together years later following the discovery of medical documents. However prior to the documents surface, as years endured, it became more apparent that memory loss was setting in, and she was aware of this.

What does this have to do with corona virus? From what we have gathered with the virus, is that it is systemic, it can infect and damage other organs and tissue of the body. It can infect the brain and optical nerves, it can affect the liver and kidneys. There is a distinct difference between pneumonia corona virus and the systemic corona virus - these health issues are one in the same - though it only establishes where corona virus has infiltrated and damaged. It is only when corona virus has infiltrated the lung tissue and presents itself in respiratory distress, that people think that they have contracted corona virus. And I tell my family this, when they have a little throat thrash - Corona virus WILL NOT present itself first as a cold or abrasive throat. You will not know you have it, and when you begin presenting the common and true respiratory distress, it may be too late.

And right here I want to make a very crucial note. Ebola first presents as a flu or cold. Meningitis first presents itself as a flu or cold. Measles first presents itself as a cold or flu. Invasive fungal sinusitis first presents itself as a flu or cold. A deadly bacteria microbial that killed a 6 year old in Texas, first presented itself as a cold or flu, or corona virus.

What all these illnesses have in common, is that, they present firstly as a common cold or flu, but if the medical institute which treats the infected fails to work fast enough to actually diagnose the individual, they will die. Yes. Ebola is fatal to many people without hospital intervention and antiviral treatments, and even still if it is not controlled quick enough the infected person will perish. Measles is deadly to children AND adults. Invasive fungal sinusitis is often fatal, unless the contaminated tissue is hacked out of the persons face - this usually results in disfigurement. The point being, because something has been described as a little flu or cold, does not mean it is harmless - it only means that we can see these symptoms presented. It is a prescript response the body has, to many viral or bacterial infections, due to an inflamed reaction to compromised tissue. That is what a sore throat is, tissue contaminated to invasive cells which the bodies white blood cells must destroy and remove - this results in abrasion or a ‘burn’. When you want to refurbish furniture, you first must remove tarnished and unsightly top coat through sanding. You can accidentally disfigure your furniture project if you are not careful, or need to do repairs on weaknesses or damage inflicted by age. The body is the same way, the cells destroy the infected cells and some cells which are not infected - this is the cytokine storm which puts individual infected with covid, into the hospital for essential medical intervention.

Now back to this topic of dementia and neuro damage. These young people as reported casually, having recovered a ‘mild’ infection from covid, and did not present any symptoms or barely ‘noticed’ any aches or whatever. They still report a loss of taste and smell. Why this is concerning to me, is it can mean that covid cells infiltrated the brain and got up to some not good businesses. NOW, I am NOT here to say, “omg, these people are doomed. Oh no.” What I will say, is that they ARE NOT CURED.

The body likely responded to some sort of infection, it might have only affected the sinus cells. Whether or not antibodies were produced is unknown. There is a possibility that the headache is a result of the body attacking compromised cells in the brain, and if that sounds scary, DO NOT LET IT MAKE YOU AFRAID. This is very important. This is only a cautionary segment, and a plea for those who have suspected they may have been exposed to covid, or have recovered from covid, to be cautious from here on out. Neuro cells can rebuild themselves, to a degree. Neuro cells or brain cells, are notorious for being permanent, non-replicable. But they can be fixed by small increments. It can also take months, or years, in an individual that is healthy. This is why I say those who have lost some sensory, must absolutely be careful. Covid cells have a very direct plan of attack, they are very illusive in the body, and cells that have gone through the trauma of protecting you from this virus may be weakened to some degree.

This is why I am adamant about directing focus to the lack of immunity or the relapses when they occur, to those that previously thought they recovered from covid. I saw a beautiful post on here a few days prior, about a woman who is HIV +, but is able to have children and a husband, without fear for them contracting the virus, because she has medicine to keep the viral count down. Thus, her family does not need to worry about HIV, her children can live a normal life, and she can have children. It’s a blessing.

It is also a very important narrative for the corona virus, an illness we are still struggling to understand to the full of our capacity. This speculation I have that antibodies formed following a corona virus infection, may be short lived or unreliable to future infection. If a person is subjected to a high concentration of virus load, such as our healthcare workers, the prospect of infection and a lethal infection increases. This is why metropolitan areas need harsh restrictions due to the corona virus, the high concentration of people increases the infection rate - probability - of a positive infection. The more covid cells you encounter, the higher risk and possibly the more severe your infection because your body is not capable of keeping up with the infection onslaught. Healthcare workers MUST BE EXTREMELY CAUTIOUS - that is why they wear hazmat suits while treating covid sufferers. They are in a viral load element, and many can not go home to their families because the risks are too great.

If you suspect you have had covid or may have encountered someone with covid, reduce your interaction with people. Do not go out. Treat yourself like you are still struggling with the virus, even if you feel you are not. Behave like you are still taking the medication your doctor gave you, even though you feel better. Let your body do its job to its fullest, before you go out courting covid once more. If you keep subjecting your body to a trauma, then the cells become eroded and run down - it increases the probability of a severe infection which will have ultimate consequences.

“Young people seem to bounce back” is a highly irresponsible narrative. We do not grasp the full effects of corona virus infection in young people. We have no test group, nor a control group. But we can follow patterns. The cases increase, due to the false belief that corona virus is not serious. It likely comes from some young person believing, “I recovered and didn’t feel that bad, thus, the virus is not that bad. I am very healthy, and the virus didn’t stand a chance.”

Wherein the truth is, your body managed to get the virus under control to the point the young person felt good. And yes, because the young person may be healthy, but they are not exempted from a second, or third infection. IF THE ANTIBODIES ARE NOT THERE. This is where we reach the relapse, reinfection, and the ongoing lethargy that some people endure. The virus is still present, but it is managed by the body. The body is producing antibodies, but the virus is still producing cells which attack the body.

This may also explain the “negatives” of those that test negative, but still feel like crud. The negative of a covid test, might mean that there is not sufficient viral load to reach a positive result. I could be wrong. All I have right now are speculation, theories. But the doctors are telling us fundamental things, and not going into specifics why.

You do not want to contract corona virus. It does not care how healthy you are, it’s primary mission is replicate and spread, and feed on hemoglobin.

When people say, “Yeah, I still don’t have my sense of taste and or smell back.” I am very alarmed. Because when someone dismisses something so essential, my first concern is not, “That is common in colds”; I begin thinking, “This virus attacks any tissue, and the sinuses have been traumatized. How long does this last?”

We do not know enough about this virus to be complacent. It does not behave anything like a cold or flu, aside from symptoms which are a synonymous onset to every other kind of horrendous viral or bacterial infection with a high fatality rate. The cytokine storm is a very sudden, aggressive onslaught on anything compromised by corona virus cells - including cells that may have not been infected let alone compromised. Individuals who come across as very proud to have recovered so efficiently from a possible corona virus infection, may be health compromised or primed for a second more serious infection.

And last, if you are a person who does not know where you liver is located, then you probably shouldn’t conclude you’ve recovered from the corona virus. And final, if you lost your sense of taste or smell, you need to be more cautious from here on out because it is possible you are not fully recovered.

#corona virus #coronavirus #covid19 #covid #covid 19 #covid-19 #wear a fucking mask #wash your hands #watch your distance #viral behavior #rona #corona #beer #i feel like Im talking to a brick wall that believes it is a fluffy fog bank #you are not a fluffy fog bank youre a fucking brick wall #there is no way in hell i will try driving through you only an idiot would do that

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taylornock · 4 years

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how cell phones made our lives better while simultaneously ruining them

hi fam!! it’s me, again. are you tired of hearing from me? me too. that’s why I’m here to rant about social media / phone / technology. bc i hate it… but in a loving way???

everyone remembers when they got their first iPhone. seriously. why is that such a monumental moment in our lives? i can hardly remember what i felt like freshman year of high school but can pinpoint the feeling of sheer glee unwrapping my iPhone 6 in eighth grade. i have this thing that is attached to me 24/7 - when I go anywhere (even downstairs) without my phone i feel weird. that is f***ing SAD! PATHETIC. i hate feeling that dependent on what is essentially a pocket robot.

for what it’s worth - phones have done INCREDIBLE things for the world as we know it. for example, this quarantine shit has been testing all of us; and our phones are helping us get through it in so many ways. our phones let us see the faces of those loved ones we are missing, our phones provide us with stupid tik tok content to keep everything light hearted, and our phones let us check in on each other. all amazing things! when we are at school, we have instant access to our lives at home . being able to call my mom whenever i want is something i definitely abuse. “mom, I’m on my way home from Thompson right now and i think i have a brain aneurysm but my bio final is at 11am tomorrow will i make it” … an actual conversation i had with my mom at the end of freshman year. needless to say i was medicated shortly after THAT meltdown. I am such a brat that i don’t know what i would do if i couldn’t text my dad and have him immediately get me the password again to our Uverse account…… god forbid i miss an episode of the bachelor. i have this phone, and that’s what i do with it? abuse its powers to ask my parents for medical advice or a password i forgot? have we lost sight of everything here?

throughout life and especially throughout quarantine… my phone is the definition of a possession that is a blessing and a curse. I’m so grateful to have the ability to bother my friends - whenever i want! the options are endless! i love keeping in touch with people i thought id never hear from again, and being able to talk to so many people in my life and make my heart swell. now, when a conversation with someone other than my two roommates (shoutout parents) is so rare ⎯ that phone is my weapon and i use it to help flatten the curve: flatten the curve of covid19 and flatten the curve of my mental illness 🙃 [humor is a coping mechanism okay let me live] but like, i KNOW i’m not the only one that looks at my screen time and immediately wants to die. how can i honestly be looking at my phone for that long? picking it up THAT many times?????? my phone is the best distraction and also the most toxic - it makes me feel better but has a tendency to bring up all my issues and blast them into the reflection of my blue light glasses...... its called fashion look it up.

to give some examples - let’s open up my most used app: snapchat. I go on snapchat with the best of intentions - to see a memory from a year ago that makes me smile. to respond to my friends and see what their mood today is based on the look on their face. to creep on snap stories and see what everyone’s cooking and doing with their lives. somehow, tho, after spending a few minutes on the app.. i end up with a pit in my stomach most of the time. the person i want to respond hasn’t responded in 4 hours. oh god lets overthink this- they don’t like me anymore and are no longer interested in speaking to me and only respond every once in a while out of pity or because they are uncomfortable. everyone hates you. oh and GOD FORBID someone leaves me on open??! I am not funny nor interesting nor worth a reply - suddenly, i have equated my value to receiving or not receiving a photo of someone’s blank stare. this is extreme, and this is dramatic. but trust me —— this is the hamster wheel always turning in my head. I’m not even going to touch on snap maps; that feature is pandoras box and someone better fucking shut it.

second most used app is instagram. i scroll for hours, i have time limits set for the app acting like i’m actually going to listen to them and get off. lmaooooooooo. i love looking at aesthetic stuff and dogs and food and recipes and my friends’ beautiful faces. but you know what i don’t like? constant nudges to compare myself to others. oh look at her having a party with all of her friends even though we aren’t supposed to be. am i a loser for trying to be safe? oh look at her washboard abs, i’m never going to look like that and will never live up to the standard of beauty society has set for me. look at all of these people in their happy relationships. why can’t i have that? it goes over and over and over. its not like i sit there and think of these things just like that, its a precedent in my mind when i stare at everybody else that i am going to size my own life up against theirs. for years i followed every single elite model / VS angel on instagram to motivate me to do better - to start being psycho about what i did to my body so i could be as gorgeous as them. what kind of fucked up mindset is that? i would literally watch their footage of them eating rice and vegetables once a day and try to copy it. i would watch their runway walks obsessively trying to recreate them in heels alone in my house - like that was all i could imagine doing with my life. did i ever stop for a second to look at that photoshoot of gigi hadid and wonder if she was happy? wonder if the constant pictures she saw of herself ever made her insecure? what was i doing? the day i unfollowed those girls was a monumental day in my journey to a better self image. i didn’t realize the people i thought were my “motivators” were actually my triggers. i have grown to a point in life now that i would much rather eat a stack of chocolate chip pancakes that make me dance in my chair like an infant than practice my runway walk and shame my body in the mirror. and i am so freakin happy!

i could go app by app for hours. but moving on to the next thing i hate about cell phones - how they have destroyed our biological methods of communication. you hear about those psychos who think the world is destroyed by technology and we are going to be overrun by robots. but hey, I’m with the psychos on this one. i have this amazing friend, Trevor Wright, who without fail at EVERY dinner announces “phones off friends on” and collects our phones into the center of the table. yes, we are 20 year old adults. yes, we hand our phones over to Trevor and let him yell at us for trying to see if ~that person~ snap chatted us back. i have so much respect for him because of this. there is nothing worse than staring at your phones when you could be having a good conversation about life, about love, about laughter + memories, about “do you think hellen keller is real?” anything, bro, anything. anything but snapchat messaging your hoe of the week or mindlessly playing tetris to twiddle your thumbs. we all need to start loving a little harder, and the first step to doing that is to communicate better. communicate smarter. I’m guilty of alllll of the above, don’t get me wrong. and I am ADD asf and constantly playing mindless games just to stimulate my brain. but i need to stop that! even writing this is taking some time away from the dumb shit on my phone - and encouraging me to communicate how i r e a l l y feel to my homies that will read this. communication - especially body language - is fascinating. I’ve studied it in psych, I’ve learned the neurological bases of behavior and why we do what we do. I’ve learned how much our life experience impacts who we are as a whole...and it! is! fascinating! i also think that��s why i love film so much. because it can capture the raw moments of your friends just being your friends, of you just being the person you are, and the world around you just existing as it exists. i love the raw moments; and not just because indy blue posted one youtube video of her slow mo laughing and now thats the only footage i find myself shooting. 😚

im not quite sure what this post is, lol. but - just a rant on technology. so listen to me:

take advantage of technology + social media! it CAN BE GREAT. for so many reasons. but, don’t let technology + social media TAKE ADVANTAGE OF YOU. stay true to you - know how to communicate with yourself and your loved ones without the use of a robot. remember that feeling when you setup up your first iPhone? imagine if you could feel that again, with your phone nowhere in sight. if you don’t know how to communicate with yourself yet, start by journaling. WRITE! TYPE! SPEAK! do what you want. getting your thoughts down even without an audience is so crucial to understanding yourself and others. if you don’t like to write, reflect. breathe. meditate. make art. do what makes you feel at peace, and do whatever makes you feel like the world makes a little bit more sense than it does.

IF YOU ARE READING DOWN TO HERE, I LOVE YOU. I LOVE YOU, SAY IT BACK! LIFE IS A FUCKING HIGHWAY. AND IM SO GLAD YOU’RE ON MY INTERSTATE. <3

xoxoxoxo

gossip girl

#phones #socialmedia #rant #blog #hi #tender #loveme #quarantine #covid19 #cellphones #iphone #followme!#taylor #tiktok #trending #writing

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sinrau · 4 years

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For some patients, the initial coronavirus symptoms are only the beginning. Surviving COVID-19 doesn’t guarantee a full recovery, and some people will still be experiencing symptoms months later.

An increasing number of reports detail these chronic COVID-19 cases where people of different ages experience debilitating symptoms caused by the original infections.

Doctors have started studying patients who have a hard time shaking post-COVID-19 symptoms, as some of these patients will need prolonged care and counseling.

The last few weeks proved that an incredible number of people simply do not care about whether they get infected with the novel coronavirus. COVID-19 has been surging to record numbers in many US states that have started reopening, and the worst may be yet to come. It’s not the increased testing that’s responsible for the massive spread. It’s just that more and more people ignore social distancing advice, and plenty of people avoid face masks like the plague, the one thing that can reduce the risk of transmission. Some are willing to risk getting infected, thinking they’re not at risk of developing complications or dying.

The sad reality is that the SARS-CoV-2 virus can be unpredictable. It’s older people who suffer from certain medical conditions at risk of experiencing a worse case of COVID-19 than healthy adults. But we’ve seen children and young adults die of coronavirus complications, including patients who did not have preexisting conditions. Even if you do survive the entire ordeal and your body fights the illness, you’re not necessarily going to get back to your previous life. Many people experience a variety of symptoms after getting rid of the infection, and nobody is ready to tell you anything about these side effects.

The disease is just too new for scientists to have all the definitive answers. Much progress has been made when it comes to recognizing unusual symptoms and offering better treatment protocols. Even patients who end up on ventilators are less likely to die than a few months ago — the death rate remains high nonetheless. But doctors won’t be able to predict whether you’re going to fully recover after contracting the virus, or whether you’re going to experience symptoms for several weeks or months to come. And those who can advise you on how to deal with the chronic symptoms that set in after you’re cured of COVID-19 won’t necessarily have answers or effective therapies to hasten the full recovery.

Dr. Jake Suett shared his coronavirus story with Vox. He works as an anesthesiology and intensive care physician at the National Health Service in Norfolk, England, and treated several COVID-19 patients until he started to feel symptoms. He was tired and had a sore throat, but he kept working. Five days later, he got a dry cough and a fever, ending up “gasping for air literally doing nothing, lying on my bed.” His chest X-rays and oxygen levels were normal, but he was still dealing with the symptom. He then developed a severe cardiac-type of chest pain. Suett still has symptoms 14 weeks later, including trouble concentrating or “brain fog.”

One doctor told him his symptoms might be related to anxiety. While psychological side-effects following the infection are expected in some patients, the doctor thinks that’s not the explanation for his condition.

The Vox report explains patients can experience several long-lasting symptoms, and some of them can be explained by the type of COVID-19 experience. Patients who spend a lot of time in the hospitals can experience muscle weakness — a CNN report tells the story of a man who woke up from a COVID-19 coma to find out he was paralyzed. Other symptoms can include anxiety, depression, and PTSD. Cognitive impairment has also been observed in some people, including older and younger patients who survived COVID-19.

Some people experience persistent pulmonary symptoms, including ongoing chest tightness and coughing. They might require additional treatment after surviving COVID-19 to address the lung damage done by the virus.

The Vox report also details the case of a 39-year-old ICU nurse in New Hampshire who was infected on March 15. Since then, she experienced relapses that prevent her from returning to work.

A COVID-19 survivor wrote their story in Stat, saying they had COVID-19 symptoms for more than 100 days. A psychiatry resident, Yochai Re ’em eventually found a support group that included other survivors who were dealing with persistent symptoms:

Some in the group had prolonged low-grade fevers that didn’t respond to standard fever-reducing medications. Some experienced terrifying neurological manifestations such as memory loss and changes in their ability to recall words in a primary or secondary language. Others were battling exercise-induced fatigue, with attempts at walking around the block sparking a relapse of symptoms. I’ve seen people citing symptoms in the central and peripheral nervous systems, the gastrointestinal tract, the skin, cardiovascular system, and more.

The doctor explained the ongoing symptoms aren’t as bad as other people’s, but they’re still something that need addressing more than three months after the initial onset of symptoms:

I am lucky not to have the debilitating fatigue, shortness of breath, and fevers others have been experiencing. At this point I’m still experiencing intermittent gastrointestinal symptoms, persistently high liver enzymes, which a liver specialist is trying to figure out, and an odd and continuous discomfort in my leg, which may be paresthesia. I’m able to go to work and go about my life just fine. Many others can’t do that.

A survivor from Iowa detailed her post-COVID symptoms to 6News. Jakie Akers tested positive 70 days ago, but the side-effects are still here.

“[I have] debilitating migraines, it feels like lightning strikes it’s just terrible,” Akers said. Her doctors diagnosed her with viral meningitis secondary to the COVID-19 infection, as well as inflammation around her heart. The latter gave the young woman an elevated heart rate. She’s still on medication for her ongoing symptoms.

A study a few days ago, via The Boston Herald, showed that many recovered patients reported at least one lingering coronavirus symptom:

The patients were assessed by a medical team about 60 days after the onset of their first COVID-19 symptom and only 18 of them, or 12.6%, reported they were completely symptom-free.

More than half of the participants had three or more symptoms. A worsened quality of life was reported among 44% of patients, according to the study.

Most people reported fatigue (53%) and shortness of breath (43%). Chest pain and joint pain were also noted. The scientists explained the symptoms can be caused by the virus directly or from the ensuing complications. More than 72% of patients developed pneumonia, and 20% received ventilation. Blood clotting, a well-known COVID-19 complication, can make the prolonged symptoms worse, the doctors believe.

Several other physicians are conducting studies and setting up treatment protocols for patients experiencing these chronic COVID-19 symptoms. Vox has a few examples, but you should check with your local hospitals to see if you can get continued care.

A few months ago, we learned of a young patient whose lungs were completely destroyed by the virus. She was otherwise healthy to the point that she qualified for a double lung transplant, a first for COVID-19 patients. The surgery may have saved her life, but the recovery would be a lot longer than that.

The point of all these stories that keep popping up online is that the best thing to do to deal with COVID-19 is to avoid it. Keep your distance from others, wash your hands, and wear face masks. Better drugs and vaccines might soon be available, and COVID-19 could be treated faster and more effectively than it is now. The alternative is risking a chronic case of COVID-19 that could last for months.

Tags: coronavirus, covid-19

Post-coronavirus symptoms show that not all recoveries look the same

#IFTTT #WordPress

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unabashedlystupendousbeliever · 7 years

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ELECTROSHOCK: A CHRONOLOGY OF PSYCHIATRIC ABUSE Leonard Roy Frank, editor 26 June 2005

1938 — Italian psychiatrists Ugo Cerletti and Lucino Bini introduced electroconvulsive treatment (ECT, EST, electric shock treatment, shock treatment, electroshock, and convulsive therapy) at the University of Rome in April 1938. The subject of the first experiment with the procedure was a vagrant identified only as “S. E.” He had been picked up by the police who had found him wandering about in a railway station. The Police Commissioner of Rome turned him over to Cerletti’s institute, where “a diagnosis of schizophrenic syndrome was made based on his passive behavior, incoherence, low affective reserves, hallucinations, deliriant ideas of being influenced, neologisms.” The first attempt to induce a convulsion with electricity on S. E. failed because insufficient current was applied. According to Cerletti, “It was proposed that we should allow the patient to have some rest and repeat the experiment the next day. All at once, the patient, who evidently had been following the conversation, said clearly and solemnly, without his usual gibberish: ‘Not another one! It’s deadly!’” Despite the subject’s demand, Cerletti administered a second and stronger shock, this time triggering the seizure. Thus, the first ECT was carried out against the subject’s will, without his or anyone else’s permission. Earlier in Rome, Cerletti had experimented with pigs and later wrote, “Having obtained authorization for experimenting from the director of the slaughterhouse, Professor Torti, I carried out tests, not only subjecting the pigs to the current for ever-increasing periods of time, but also applying the current in various ways across the head, across the neck, and across the chest.” Referring to the first use of electroshock on a human being, Cerletti wrote, “When I saw the patient’s reaction, I thought to myself: This ought to be abolished” [Editor’s summary based on Frank J. Ayd Jr., “Guest Editorial: Ugo Cerletti (1877-1963),” Psychosomatics, November-December 1963 and Cerletti, “Old and New Information About Electroshock,” American Journal of Psychiatry, August 1950].

1940 — These sundry procedures [i.e., lobotomy and several forms of shock treatment] produce “beneficial” results by reducing the patient’s capacity for being human. The philosophy is something to the effect that it is better to be a contented imbecile than a schizophrenic. HARRY STACK SULLIVAN (U.S. psychiatrist), referring to lobotomy and shock treatment (in his phrase psychiatry’s “decortication treatments”), “Conceptions of Modern Psychiatry,” Psychiatry, February 1940

1942 — Case 1. M.C. Philadelphia State Hospital. Reg. No. 51103. Paranoid dementia praecox in a woman of 45. Electrical convulsion treatments, 62 [in 16 of which no convulsion was produced], over a period of 5½ months. Numerous punctate hemorrhages in the cerebral cortex, medulla, cerebellum and basal ganglia. Areas of perivascular edema and necrosis....Comment. The foregoing case is the first reported instance, so far as we know, of hemorrhages in the brain attributable to electrical convulsion treatment.... BERNARD J. ALPERS and JOSEPH HUGHES (U.S. physicians), “The Brain Changes in Electrically Induced Convulsions in the Human,” Journal of Neuropathology and Experimental Neurology, April 1942

1942 — The disturbance in memory [caused by ECT] is probably an integral part of the recovery process. I think it may be true that these people have for the time being at any rate more intelligence than they can handle and that the reduction of intelligence is an important factor in the curative process.

ABRAHAM MYERSON (U.S. psychiatrist), in discussion of Franklin G. Ebaugh et al., “Fatalities Following Electric Convulsive Therapy: A Report of 2 Cases with Autopsy Findings,” Transactions of the American Neurological Association, June 1942

1948 — We started by inducing two to four grand mal convulsions daily until the desired degree of regression was reached.... We considered a patient had regressed sufficiently when he wet and soiled, or acted and talked like a child of four....

Sometimes the confusion passes rapidly and patients act as if they had awakened from dreaming; their minds seem like clean slates upon which we can write.

CYRIL J. C. KENNEDY and DAVID ANCHEL (U.S. psychiatrists), “Regressive Electric-Shock in Schizophrenics Refractory to Other Shock Therapies.” Psychiatric Quarterly, vol. 22, p. 317-320,

1949 — [While filming Annie Get Your Gun in 1949, Judy Garland] began to arrive at the studio late or not at all, often staying home, unable to rise from her bed. Her weight dropped to 90 pounds, and her hair began to fall out, a side effect, most likely, of her profligate use of amphetamines. In an effort to lift her out of her depression, a new doctor, Fred Pobirs, persuaded her to undergo a series of six electroshock treatments. GERALD CLARKE (U.S. writer), Get Happy: The Life of Judy Garland, 2000. Garland returned to the set after undergoing ECT, but, as she recalled later, “I couldn’t learn anything. I couldn’t retain anything; I was just up there making strange noises. Here I was in the middle of a million-dollar property, with a million-dollar wardrobe, with a million eyes on me, and I was in a complete daze. I knew it, and everyone around me knew it.” The studio soon suspended her from the film.

1951 — Shock therapy never builds. It only destroys, and its work of destruction is beyond control. It is not new. The only new thing about it is the method of delivering the shock. A hundred and fifty years ago a well-recognized shock-treatment method was to flog or frighten the patient, and in some instances the results were excellent. Now we “do it electrically,” and we get about the same percentage of good results, but with some breaking of bones, and memory losses which frightening and flogging never produced.

Memory losses in modern shock therapy may be passed off as infrequent, limited, and temporary, but they are really frequent, they cannot be limited, and they are usually permanent. I have heard doctors laugh about them as they laugh about other things in mental patients, but the losses are serious to the patients themselves. And along with such losses go changes in general intelligence and personality, but when these changes are too obvious to be overlooked they are ascribed to the mental illness with no mention at all of the treatment. JOHN MAURICE GRIMES (U.S psychiatrist), When Minds Go Wrong, 2nd ed., 20, 1954 (1951)

1956 — One of us (J. A. E.) has collected these statements over a period of eight years in Britain and the United States. Most of them have been heard on many occasions. Colleagues who have seen the list of comments have confirmed our findings that many affect-laden colloquialisms are regularly used by shock therapists in referring to their therapy.... l. “Let’s give him the works.” 2. “Hit him with all we’ve got.” 3. “Why don’t you throw the book at him?” 4. “Knock him out with EST [i.e., ECT].” 5. “Let’s see if a few shocks will knock him out of it.” 6. “Why don’t you put him on the assembly line?” 7. “If he would not get better with one course, give him a double-sized course now.” 8. “The patient was noisy and resistive so I put him on intensive EST three times a day.” 9. One shock therapist told the husband of a woman who was about to be shocked that it would prove beneficial to her by virtue of its effect as “a mental spanking.” 10. “I’m going to gas him.” 11. “Why don’t you give him the gas?” 12. “I spend my entire mornings looking after the insulin therapy patients.” 13. “I take my insulin therapy patients to the doors of death, and when they are knocking on the doors, I snatch them back.” 14. “She’s too nice a patient for us to give her EST.” DAVID WILFRED ABSE and JOHN A. EWING (British-born U.S. psychiatrists), “Transference and Countertransference in Somatic Therapies,” Journal of Nervous and Mental Diseases, January 1956

1961 — Every morning I woke in dread, waiting for the day nurse to go on her rounds and announce from the list of names in her hand whether or not I was for shock treatment, the new and fashionable means of quieting people and of making them realize that orders are to be obeyed and floors are to be polished without anyone protesting and faces are made to be fixed into smiles and weeping is a crime.

JANET FRAME (New Zealand electroshock survivor and writer), Faces in the Water, 1.1, 1961

1961 — Suddenly the inevitable cry or scream sounds from behind the closed doors which after a few minutes swing open and Molly or Goldie or Mrs. Gregg, convulsed and snorting, is wheeled out. I close my eyes tight as the bed passes me, yet I cannot escape seeing it, or the other beds where people are lying, perhaps heavily asleep, or whimperingly awake, their faces flushed, their eyes bloodshot. I can hear someone moaning and weeping; it is someone who has woken up in the wrong time and place, for I know that the treatment snatches these things from you, leaves you alone and blind in a nothingness of being, and you try to fumble your way like a newborn animal to the flowing of first comforts; then you wake, small and frightened, and tears keep falling in a grief that you cannot name. JANET FRAME, Faces in the Water, 1.1, 1961

JANET FRAME, Faces in the Water, 2.1, 1961

1961 — I tried to forget my still-growing disquiet and dread and the haunting smell of the other ward, as I became to all appearances one of the gentle contented patients of Ward Seven, that the E.S.T. which happened three times a week, and the succession of screams heard as the machine advanced along the corridor, were a nightmare that one suffered for one’s own “good.” “For your own good” is a persuasive argument that will eventually make man agree to his own destruction. JANET FRAME, Faces in the Water, 2.1, 1961

1963 — The name on my admission chart at the Allan Memorial reads “Linda Helen Cowan (nee Macdonald).” It was March 28, 1963. A young wife and mother, I was to become one of the last victims of Dr. Ewen Cameron’s experiments on the human brain. I am 49 years old today. I accept my age only because my birth certificate validates the time, day, and the place of my birth. In reality, my reality, I am 23. I have no memory of existing prior to October 1963, and the recollections I do have of events of the following years until 1966 are fuzzy and few.... Dr. Cameron’s “brainwashing” experiments wiped my brain clean of every experience I had ever known.... My parents were introduced to me that winter of 1963/64. Of course, I did not know them. The children came back from wherever they had been living. I had no idea who they were, and I certainly had no sense of what a ‘mother’ was. They were all “older” than I; the oldest could read and write—their mother could not.... A woman robbed of her life. I had decided to share my life with you. If sharing my personal experience can help to educate the public so that such abusive experimentation will not, for any reason, with or without consent, be performed on human beings ever again, indeed something positive will have emerged from a living hell. LINDA MACDONALD (Canadian electroshock survivor), “Breakthrough” (1986), in Bonnie Burstow and Don Weitz, eds., Shrink Resistant: The Struggle Against Psychiatry in Canada, 1988

1964 — A person who does not have a memory is not able to perform as an actress. I’m still able to do things—that is, I’m able to do them in a very limited way as a kind of hobby. I have to work terribly hard to do it. Recently, I did a public theater appearance. I had to drive around with the tape on saying the lines over and over and over and over. Previously, I’d just do a couple of readings... and that would be enough. I don’t have this quick ability anymore. I don’t like to appeal to emotionalism, but I’m furious about the whole thing. I mean my life changed radically.... Since the shock treatment [in 1964] I’m missing between eight and fifteen years of memory and skills, and this includes most of my education. I was a trained classical pianist.... Well, the piano’s in my house, but I mean it’s mostly just a sentimental symbol. It just sits there. I don’t have that kind of ability any longer.... I lost people by losing those eight to fifteen years. People come up to me and they speak to me and they know me and they tell me about things that we’ve done. I don’t know who they are. I don’t know what they’re talking about although obviously I have been friendly with them.... [The shock treatment] diminished me.... I am certainly nothing like I was, and my life is nothing like it would have been. CONNIE NEIL (Canadian electroshock survivor), testifying at electroshock hearings conducted by Toronto’s Board of Health, January 1984, in Phoenix Rising (Electroshock Supplement), April 1984

1974 — The day after I was discharged, my hospital roommate, Ruth, escaped and jumped from the University of Texas tower. She died on impact—a heap of broken bones to go with her broken spirit. Only three days previous she had told me that she was tired of walking around like a zombie. She blamed this zombiness on a series of shock treatments she had recently received. JIMMIE BREWER (U.S. psychiatric survivor), in “NAPA News,” Madness Network News, June 1974

1974 — He [the old personality] was dead. Destroyed by order of the court, enforced by the transmission of high-voltage alternating current through the lobes of his brain. Approximately 800 mills of amperage at durations of 0.5 to 1.5 seconds had been applied on twenty-eight consecutive occasions, in a process known technologically as “Annihilation ECS” [i.e., ECT]. A whole personality had been liquidated without a trace in a technologically faultless act that has defined our relationship ever since. I have never met him. Never will. ROBERT M. PIRSIG (U.S. electroshock survivor and writer), Zen and the Art of Motorcycle Maintenance, 7, 1974

1974 — Interviewer: You say you’d rather have a lobotomy than electroconvulsive shock? Do you have some pretty solid ideas about what electroconvulsive shock does? Pribram: No—I just know what the brain looks like after a series of shocks—and it’s not very pleasant to look at. KARL PRIBRAM (U.S. psychologist and neurosurgeon), “From Lobotomy to Physics to Freud... an Interview with Karl Pribram,” APA Monitor (American Psychological Association), September-October 1974

1974 — I came home from the office after that first day back feeling panicky. I didn’t know where to turn. I didn’t know what to do. I was terrified. I’ve never been a crying person, but all my beloved knowledge, everything I had learned in my field during twenty years or more, was gone. I’d lost everything that professionals take for granted. I’d lost my experience, my knowing. But it was worse than that. I felt that I’d lost my self. I fell on the bed and cried and cried and cried. MARILYN RICE (U.S. electroshock survivor and government official), describing her return to work following a series of 8 ECTs in the early 1970s, in Berton Roueché, “As Empty as Eve,” New Yorker, 9 September 1974. Rice was cited as Natalie Parker, a pseudonym, in the article.

1977 — [Electrically induced seizures] are an iatrogenic injury to the brain. Even if they could be proved to relieve mental anguish more often than they cause it, and even if some patients ask for ECT and are pleased with its effects, the question of whether to pursue happiness through brain damage cannot be decided scientifically. This is a value judgment, which, in the interest of freedom and dignity, must be left to the fully informed individual. JOHN FRIEDBERG (U.S. neurologist), “ECT as a Neurologic Injury,” Psychiatric Opinion, 14:18, 1977

1977-1978 — Between February 1977 and October 1978 Freeman and Kendell interviewed 166 patients who had ECT during either 1971 or 1976 in Edinburgh. Of this group, 64% reported “memory impairment” (25% “thought symptom severe,” 39% “thought symptom mild”). Twenty-eight percent agreed with the statement that “ECT causes permanent changes to memory.” Squire reported findings of his three-year follow-up study of 35 people who had received an average of 11 bilateral ECTs. Of the 31 people available for interview, 18 (58%) answered “no” to the question, “Do you think your memory now is as good as it is for most people your age?” All but one of the 18 attributed their memory difficulties to ECT. LEONARD ROY FRANK (U.S. electroshock survivor and editor), “Electroshock: Death, Brain Damage, Memory Loss, and Brainwashing,” Journal of Mind and Behavior, Summer-Autumn 1990. The article by psychiatrists C. P. L. Freeman and R. E. Kendell was published under the title of “ECT: I. Patients’ Experiences and Attitudes” in the British Journal of Psychiatry, July 1980; psychologist Larry Squire’s study was summarized in his letter to American Journal of Psychiatry, September 1982

1980 — One advantage in the use of this treatment as far as hospital staff is concerned is that the effect of successive shock treatments makes the patient more and more confused, regressed, compliant, and—above all—forgetful, until the patient no longer remembers that he is fighting his hospitalization and the use of electroshock treatment. If there is any question whether the patient meets the criteria for commitment, several shocks later all doubts will have disappeared as the patient becomes increasingly more disoriented and confused. JONAS ROBITSCHER (U.S. psychiatrist), The Powers of Psychiatry, 16, 1980

1984 — It’s a matter of losing skills, losing learning that I had accumulated.... My entire college education has been completely wiped out and besides that all the reading and learning that I did on my own in the past three years.... I guess the doctors would consider [that ECT] had beneficial effects because it has “cured my depression,” but it’s cured my depression by ruining my life, by taking away everything that made it worth having in the first place.... It’s really important to point out what [ECT] does to the emotions. It’s like I exist in this kind of nowhere world right now. I don’t feel depressed. On the other hand I don’t feel happy. I just kind of feel nothing at all. LINDA ANDRE (U.S. electroshock survivor, director of the Committee for Truth in Psychiatry, and writer), after undergoing 15 ECTs at New York’s Payne Whitney Psychiatric Clinic in 1984 at the age of 24, radio interview, WBAI (New York), 1985

1984 — My behavior [following ECT in 1984] was greatly changed; in a brain-damaged stupor, I smiled, cooperated, agreed that I had been a very sick girl and thanked the doctor for curing me. I was released from the hospital like a child just born. I knew where I lived, but I didn’t recognize the person I lived with. I didn’t know where I had gotten the unfamiliar clothes in the closet. I didn’t know if I had any money or where it was. I didn’t know the people calling me on the phone.... Very, very gradually—I realized that three years of my life were missing. Four years after shock, they are still missing. LINDA ANDRE, “The Politics of Experience,” testimony before the Quality of Care Conference, Albany (New York), 13 May 1988, in Leonard Roy Frank, “Electroshock: Death, Brain Damage, Memory Loss, and Brainwashing,” Journal of Mind and Behavior, Summer-Autumn 1990

1985 — I told my shrink I didn’t want to be cured of being a lesbian. He said that just proved how sick I was. He said I needed shock treatment. SHEILA GILHOOLY (Canadian electroshock survivor and writer), in Persimmon Blackbridge and Gilhooly, “Still Sane,” Still Sane, 1985

1989 — We were unable to confirm earlier reports that treatment with ECT or adequate amounts of antidepressants are associated with lower mortality in depressed persons. In fact, neither general (all cause) mortality rates nor suicide rates varied significantly among treatment groups. DONALD W. BLACK, GEORGE WINOKUR (U.S. psychiatrists) et al., among conclusions in “Does Treatment Influence Mortality in Depressives? A Follow-up of 1076 Patients with Major Affective Disorders,” Annals of Clinical Psychiatry, September 1989. This follow-up study conducted at the University of Iowa Psychiatric Hospital in Iowa City divided 1076 inpatients admitted between 1970 and 1981 into four “treatment groups”: ECT (372 patients), adequate antidepressants (180), inadequate antidepressants (317), and neither ECT nor antidepressants (207).

1989 — [Gary] Aden was a founder and first President of the International Psychiatric Association for the Advancement of Electrotherapy (now the Association for Convulsive Therapy)... A newspaper account dated September 27, 1989, in the San Diego Union [reported]: “Dr. Gary Carl Aden, 53, of La Jolla gave up his medical license effective September 8 after allegations that he had sex with patients, beat them and branded two of the women with heated metal devices, including an iron that bore his initials.” In another story a patient describes Aden as drugging her with a hypodermic before sexually abusing her and beating her with a riding crop [San Diego Union, 1 January 1989]. Aden was permitted to forfeit his license without admitting guilt. He was not subjected to being psychiatrically diagnosed or treated involuntarily, nor was he criminally charged. PETER R. BREGGIN, Toxic Psychiatry, 9, 1991. Aden was Medical Director of the San Diego Neuropsychiatric Clinic for Human Relations Center in addition to being the plaintiff in Aden v. Younger, which challenged the 1976 law regulating the use of ECT and psychosurgery in California.

1992 — There is an extensive literature on brain damage from ECT as demonstrated in large animal studies, human autopsy studies, brain wave studies, and an occasional CT scan study. Animal and human autopsy studies show that shock routinely causes widespread pinpoint hemorrhages and scattered cell death. PETER R. BREGGIN, “The Return of ECT,” Readings (a publication of the American Orthopsychiatric Association), March 1992. Glen Peterson, a major ECT proponent and a former Executive Director of the International Psychiatric Association for the Advancement of Electrotherapy, sees the brain-damage issue differently: “The possibility of brain damage is absolutely refuted by brain scans, by neuropsychological studies, by autopsies, by animal studies, and by analysis of cerebrospinal fluid and blood chemicals that leak from damaged cells that aren’t detected in ECT patients.” (in Russ Rymer, “Electroshock,” Hippocrates, March-April 1989)

1993 — ECT may effectively silence people about their problems, and even convince some people that they are cured by numbing their faculties and destroying their memories. It may fulfill a socially-valued function in reinforcing social norms and returning people to unhappy or abusive situations, or to isolation and poverty without any expenditure on better services or community development. It is easier to numb people and induce forgetfulness than to try to eradicate poverty, provide worthwhile jobs and deal with people’s demands to be listened to, understood, loved and valued as part of the community. JAN WALLCRAFT (British electroshock survivor and writer), “ECT: Effective, But for Whom?” OPENMIND (British journal), April-May 1993

1994 — One may see in the faces of patients condemned to electroconvulsive therapy an expectation that they are scheduled for torture; the casual order—”No breakfast for you, you’re getting shock this morning”—can produce hysteria and panic. Even were it beneficial, which it is not, the patient’s conviction that he or she is subjected to torture makes it such. As arms and legs are held down and the body thrashes under the force of the electrical charge, one is observing torture under the guise of “treatment.” KATE MILLETT (U.S. psychiatric survivor and writer), The Politics of Cruelty: An Essay on the Literature of Political Imprisonment, pp. 89-90, 1994

1995 — Psychiatrists don’t make much money, and by practicing ECT they can bring their income almost up to the level of the family practitioner or internist. CONRAD SWARTZ (U.S. psychiatrist), in Dennis Cauchon, “Shock Therapy,” USA Today, 6 December 1995. Swartz is co-owner of Somatics, Inc., manufacturer of the Thymatron ECT device. Cauchon reported that, according to the American Medical Association, psychiatrists earned an average of $131,300 in 1993.

1996 — Among the small fraternity of electroshock experts, psychiatrist Richard Abrams is widely regarded as one of the most prominent. Abrams, 59, who retired recently as a professor at the University of Health Sciences/Chicago Medical School, is the author of psychiatry’s standard textbook on ECT. He is a member of the editorial board of several psychiatric journals. The American Psychiatric Association’s 1990 task force report on ECT is studded with references to more than 60 articles he has authored.... Yet Abrams’s 340-page textbook [Electroconvulsive Therapy, 2nd ed., 1992] never mentions his financial interest in Somatics, the company he [co-]founded in 1983.... Financial ties between device manufacturers, drug companies and biotech firms “are a growing reality of health care and a growing problem,” said Arthur L. Caplan, director of the Center for Bioethics at the University of Pennsylvania School of Medicine. For doctors “the questions that such financial conflicts of interest generate are, do patients get adequate full disclosure of options or are you skewing how you present the facts because you have a financial stake in the treatment and you personally profit from it every time it’s used?” Caplan asked. “It’s especially disturbing with ECT because it’s so controversial” and public mistrust of the treatment is so great, he added.... Abrams declined to say how much he has earned from Somatics. Approximately 1,250 machines, priced at nearly $10,000, have been sold to hospitals worldwide, he said. Between 150 and 200 machines are sold annually, according to Abrams. Somatics also sells reusable mouthguards for $29, which are designed to minimize the risk of chipped teeth or a lacerated tongue. SANDRA G. BOODMAN, “Shock Therapy: It’s Back,” Washington Post (Health, p. 18), 24 September 1996. Responding to the same failure-to-disclose issue raised in Dennis Cauchon’s two-part series on ECT (“Shock Therapy,” USA Today, 6-7 December 1995), Abrams concluded his letter to the editor (11 December 1995) as follows: “If there is any shame attached to ECT, it is that it has too often been given by inexperienced and poorly trained doctors with unsafe and obsolete equipment. A copy of my book, and one of my ECT devices, placed in each hospital offering this treatment should go along way toward correcting this problem.” Abrams, in the 3rd edition of Electroconvulsive Therapy (1997), disclosed that he is “President of Somatics, Inc., a firm that manufactures and distributes the Thymatron ECT device” not in the book’s text but on the back flap of the book jacket.

1996 — One moment that I remember clearly from my hospital stay for ECT in 1996 is the horror I felt when after one of my treatments I couldn’t remember how old my children were. Not only did the ECT not work for me, but my suffering was compounded when I realized that approximately 2 years of my life prior to the ECT had been erased. My retention of new information is also severely impaired. If anyone had told me that this could happen, even a remote chance, I never would have consented to ECT. I would much rather have lost a limb or 2 than to have lost my memory — my “self.” JACKIE MISHRA (U.S. electroshock survivor), in Loren R. Mosher and David Cohen, “The Ethics of Electroconvulsive Therapy (ECT),” Virtual Mentor (Ethics Journal of the American Medical Association), October 2003

2000 — My long-term memory deficits far exceed anything my doctors anticipated, I was advised about, or that are validated by research. To the contrary, either I am one in a thousand, a complete anomaly, to be able to document memory loss still remaining after three years and extending as far back as incidences eight to nine years ago, or the profession in general, after all these years of treatment with ECT, has still failed to identify and come to grips with the true potential risks. While the more distant incidents may be random events, they are hardly insignificant ones: hosting and driving Mother Teresa for a full-day visit to Los Angeles in 1989; the dinner reception for my National Jefferson Award in Washington, D.C. in 1990, where I met and sat beside my co-honoree, General Colin Powell; my brother’s wedding in 1991—the list goes on, and keeps growing as people bring up references to the past in casual conversations. Human memory seems to me to be one of the most precious aspects of our personality, since our memories are so critical to who we are and how we see ourselves and others. The memories of our past give us an understanding of where we fit in the world. I have experienced more than a “cognitive deficit.” I have lost a part of myself. ANNE B. DONAHUE (U.S. electroshock survivor and attorney), referring to the memory loss she experienced following two ECT series in 1995 and 1996, 33 treatments in all, which she reports saved her life, “Electroconvulsive Therapy and Memory Loss: A Personal Journey,” Journal of ECT (“Official Journal of the Association for Convulsive Therapy”), July 2000

#ECT #mental illness #depression #psychology #psychiatry #antipsychiatry #anti psychiatry

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gordonwilliamsweb · 4 years

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Stalked by The Fear That Dementia Is Stalking You

Navigating Aging

Navigating Aging focuses on medical issues and advice associated with aging and end-of-life care, helping America’s 45 million seniors and their families navigate the health care system.

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Do I know I’m at risk for developing dementia? You bet.

My father died of Alzheimer’s disease at age 72; my sister was felled by frontotemporal dementia at 58.

And that’s not all: Two maternal uncles had Alzheimer’s, and my maternal grandfather may have had vascular dementia. (In his generation, it was called senility.)

So what happens when I misplace a pair of eyeglasses or can’t remember the name of a movie I saw a week ago? “Now comes my turn with dementia,” I think.

Then I talk myself down from that emotional cliff.

Am I alone in this? Hardly. Many people, like me, who’ve watched this cruel illness destroy a family member, dread the prospect that they, too, might become demented.

Judith Graham (left) with her sister, Deborah.(Courtesy of Judith Graham)

The lack of a cure or effective treatments only adds to the anxiety. Just this week, news emerged that another study trying to stop Alzheimer’s in people at extremely high genetic risk had failed.

How do we cope as we face our fears and peer into our future?

Andrea Kline, whose mother, as well as her mother’s sister and uncle, had Alzheimer’s disease, just turned 71 and lives in Boynton Beach, Florida. She’s a retired registered nurse who teaches yoga to seniors at community centers and assisted-living facilities.

“I worry about dementia incessantly. Every little thing that goes wrong, I’m convinced it’s the beginning,” she told me.

Because Kline has had multiple family members with Alzheimer’s, she’s more likely to have a genetic vulnerability than someone with a single occurrence in their family. But that doesn’t mean this condition lies in her future. A risk is just that: It’s not a guarantee.

The age of onset is also important. People with close relatives struck by dementia early — before age 65 — are more likely to be susceptible genetically.

Kline was the primary caregiver for her mother, Charlotte Kline, who received an Alzheimer’s diagnosis in 1999 and passed away in 2007 at age 80. “I try to eat very healthy. I exercise. I have an advance directive, and I’ve discussed what I want [in the way of care] with my son,” she said.

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“Lately, I’ve been thinking I should probably get a test for APOE4 [a gene variant that can raise the risk of developing Alzheimer’s], although I’m not really sure if it would help,” Kline added. “Maybe it would add some intensity to my planning for the future.”

I spoke to half a dozen experts for this column. None was in favor of genetic testing, except in unusual circumstances.

“Having the APOE4 allele [gene variant] does not mean you’ll get Alzheimer’s disease. Plenty of people with Alzheimer’s don’t have the allele,” said Mark Mapstone, a professor of neurology at the University of California-Irvine. “And conversely, plenty of people with the allele never develop Alzheimer’s.”

Tamar Gefen, an assistant professor of psychiatry and behavioral sciences at Northwestern University’s Feinberg School of Medicine, strongly suggests having an in-depth discussion with a genetic counselor if you’re considering a test.

“Before you say ‘I have to know,’ really understand what you’re dealing with, how your life might be affected, and what these tests can and cannot tell you,” she advised.

Karen Larsen, 55, is a social worker in the Boston area. Her father, George Larsen, was diagnosed with vascular dementia and Alzheimer’s at age 84 and died within a year in 2014.

Larsen is firm: She doesn’t want to investigate her risk of having memory or thinking problems.

“I’ve already planned for the future. I have a health care proxy and a living will and long-term care insurance. I’ve assigned powers of attorney, and I’ve saved my money,” she said. “Eating a healthy diet, getting exercise, remaining socially engaged — I already do all that, and I plan to as long as I can.”

“What would I do if I learned some negative from a test — sit around and worry?” Larsen said.

Currently, the gold standard in cognitive testing consists of a comprehensive neuropsychological exam. Among the domains examined over three to four hours: memory, attention, language, intellectual functioning, problem-solving, visual-spatial orientation, perception and more.

Brain scans are another diagnostic tool. CT and MRI scans can show whether parts of the brain have structural abnormalities or aren’t functioning optimally. PET scans (not covered by Medicare) can demonstrate the buildup of amyloid proteins — a marker of Alzheimer’s. Also, spinal taps can show whether amyloid and tau proteins are present in cerebrospinal fluid.

A note of caution: While amyloid and tau proteins in the brain are a signature characteristic of Alzheimer’s, not all people with these proteins develop cognitive impairment.

Several experts recommend that people concerned about their Alzheimer’s risk get a baseline set of neuropsychological tests, followed by repeat tests if and when they start experiencing worrisome symptoms.

“When it comes to thinking and memory, everyone is different,” said Frederick Schmitt, a neurology professor at the University of Kentucky. Having baseline results is “very helpful” and “allows us to more carefully measure whether, in fact, significant changes have occurred” over time, he said.

Nora Super holds nieces Kylie and Lian Ascher on the couch beside Nora’s father, Bill Super, and her aunt Trudy Super.(Courtesy of Nora Super)

Nora Super, senior director of the Milken Institute Center for the Future of Aging, watched her father, Bill Super, and all three of his siblings succumb to Alzheimer’s disease over the course of several years — falling, she said, “like a row of dominoes.”

One of her sisters was tested for the APOE4 genetic variant; results were negative. This is no guarantee of a dementia-free future, however, since hundreds of genes are implicated in Alzheimer’s, Lewy body dementia, frontotemporal dementia and vascular dementia.

Rather than get genetic or neuropsychological tests, Super has focused on learning as much as she can about how to protect her brain. At the top of the list: managing her depression as well as stress. Both have been linked to dementia.

Also, Super exercises routinely and eats a MIND-style diet, rich in vegetables, berries, whole grains, nuts, fish and beans. She is learning French (a form of cognitive stimulation), meditates regularly and is socially and intellectually active.

According to a growing body of research, physical inactivity, hearing loss, depression, obesity, hypertension, smoking, social isolation, diabetes and low education levels raise the risk of dementia. All of these factors are modifiable.

What if Super started having memory problems? “I fear I would get really depressed,” she admitted. “Alzheimer’s is such a horrible disease: To see what people you love go through, especially in the early stages, when they’re aware of what’s happening but can’t do anything about it, is excruciating. I’m not sure I want to go through that.”

Gefen of Northwestern said she tells patients that “if [cognitive testing] is something that’s going to stress you out, then don’t do it.”

Nancy Smith celebrates her 81st birthday with sons Nigel (right) and Tim Smith.(Courtesy of Nigel Smith)

Nigel Smith, 49, had a change of heart after caring for his mother, Nancy Smith, 81, who’s in hospice care in the Boston area with Alzheimer’s. When he brought his mother in for a neuropsychological exam in early 2017 and she received a diagnosis of moderate Alzheimer’s, she was furious. At that point, Nancy was still living in the family’s large home in Brookline, Massachusetts, which she refused to leave.

Eventually, after his mother ended up in the hospital, Smith was given legal authority over her affairs and he moved her to a memory care unit.

“Now, she’s deteriorated to the point where she has about 5% of her previous verbal skills,” Nigel said. “She smiles but she doesn’t recognize me.”

Does he want to know if something like this might lie in his future?

A couple of years ago, Smith said he was too afraid of Alzheimer’s to contemplate this question. Now he’s determined to know as much as possible, “not so much because I’m curious but so I can help prepare myself and my family. I see the burden of what I’m doing for my mother, and I want to do everything I can to ease that burden for them.”

Kim Hall, 54, of Plymouth, Minnesota, feels a similar need for a plan. Her mother, Kathleen Peterson, 89, a registered nurse for over 50 years, was diagnosed with vascular dementia five years ago. Today, she resides in assisted living and doesn’t recognize most of her large family, including dozens of nieces and nephews who grew up with Hall.

Hall knows her mother had medical issues that may have harmed her brain: a traumatic brain injury as a young adult, uncontrolled high blood pressure for many years, several operations with general anesthesia and an addiction to prescription painkillers. “I don’t share these, and that may work in my favor,” she said.

Still, Hall is concerned. “I guess I want to know if I’m at risk for dementia and if there is anything I can do to slow it down,” she said. “I don’t want what happened to my mother to happen to me.” Probably, Hall speculated, she’ll arrange to take a neuropsychological exam at some point.

Several years ago, when I was grieving my sister’s death from frontotemporal dementia, my doctor suggested that a baseline exam of this sort might be a good idea.

I knew then I wouldn’t take him up on the offer. If and when my time with dementia comes, I’ll have to deal with it. Until then, I’d rather not know.

Stalked by The Fear That Dementia Is Stalking You published first on https://nootropicspowdersupplier.tumblr.com/

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stephenmccull · 4 years