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    1 year ago

    My Dance With Alzheimer’s: Striving Through Imperfection

    Posted May 30, 2024


    By Greg O'Brien


    “The greatest obstacle to discovery is not ignorance, it is the illusion of knowledge.” (the late Daniel J. Boorstin, distinguished historian)

    At 74, fighting advancing Alzheimer’s, I’ve found peace in imperfection—the illusion of knowledge. My mind used to be my best friend; now there’s no chance for reconciliation. So I write and think from the heart, the place of the soul.

    My heart now tells me that I’m not perfect—though, arrogantly at times, I thought I might be. But I never was perfect, no matter what my Irish mother often insisted. Yet, she had Alzheimer’s as well.

    Alzheimer’s has brought me to the realization of imperfection—and it’s a gift.

    I’ve learned the hard way that it’s okay not to be perfect, to have imperfect parents and children, or to not strive in risky ways for perfection. There’s no guilt here; in fact, there’s inner strength. Reality is a pill we all should swallow. Society and the advertising media continually pressure us to be faultless individuals, raising in us Superman expectations that are hazardous to our spirit and about as real as Kryptonite. Failure, as measured against success, is not an option that we generally like to declare, but acknowledgment of failure can be freeing to the soul.

    Einstein had something to say about this: “There is nothing known as ‘Perfect.’ It’s only those imperfections which we choose not to see!!”

    And Winston Church, who scholars say suffered from depression and perhaps Bipolar disorder, once observed: “Perfection is the enemy of progress.”

    Alzheimer’s has enhanced my perspective. And that’s progress. I’ve found peace in my shortcomings—a perseverance to press on in the face of difficulties, which now include prostate cancer, a breakdown of my body, and deep depression. Now, as part of my limitations, I get angry with God when synapses in my brain are not working. I often explode loudly (generally privately), taking the Lord’s name in vain. I feel deep guilt about this as if I’ve just burned down a convent full of nuns.

    Yet, God, or the universe if you will, has big shoulders and forgives. I see God, in my imperfections, as a cross between “Lurch” in the old Addams Family sitcom with his deep resonant groans and Kojak’s Telly Savalas: “Who loves ya, Baby!”

    And so I’ve had to forgive myself.

    Cautions Harvard University’s Division of Continuing Education about trying to be perfect: “For many, working hard and doing their best is achievement enough, even if they don’t get a perfect score. However, for those wrestling with perfectionism, doing their best isn’t enough, and they’ll strive to be perfect at the expense of their own health and wellness…being human inherently means being imperfect. While it’s good to strive for your best in many situations, perfectionism says that everything you do has to be perfect — and anything less than that is unacceptable.

    “Individuals with perfectionist tendencies may have historically been rewarded for good work, and are conditioned to seek that out again. They may believe they must be perfect to please their parents or earn their family’s respect. They may have a fear of failure and believe that they can avoid it by being perfect. Or they may need to meet unrealistic expectations in a world of curated, seemingly ’perfect’ lives on social media. But whatever the cause, perfectionism isn’t a healthy way to approach the world.”

    In this imperfect world, people and their families battling Alzheimer’s need tools to fight Alzheimer’s. These tools and resources are available through:

    • Cure Alzheimer’s Fund (https://curealz.org/), which targets breakthrough research
    • Harvard Health Publishing (https://www.health.harvard.edu/mind-and-mood/shield-your-brain-from-decline)
    • Dr. Rudy Tanzi, a world-renowned Alzheimer’s expert, Harvard professor of neurology, co-director of the Henry and Allison McCance Center for Brain Health at Massachusetts General Hospital, and Chair of the Cure Alzheimer’s Fund Research Leadership Group (https://curealz.org/researchers/rudy-tanzi/).

    My late father, who also died of dementia, once told me, quoting from someone else: “Life is like a river; you need to study it, as it goes by, then decide the right time to put your feet in the water.”

    Upon my diagnosis of Alzheimer’s, my doctor and close friend, instructed me: “You need to learn to dance with Alzheimer’s.” While I’ve always been a horrible dancer, as my friends would attest—clumsy, and no rhythm— I’ve learned over time to keep a beat with Alzheimer’s, one foot at a time.

    And so it is in life, one step at a time.

    So let’s dance…


    1 year ago

    Fda Approves Kisunla™ (Donanemab) For Treatment Of Alzheimer’S Disease

    FDA APPROVES KISUNLA™ (DONANEMAB) FOR TREATMENT OF ALZHEIMER’S DISEASE

    Posted July 3, 2024

    On July 2, the FDA approved donanemab for the treatment of early symptomatic Alzheimer’s disease. Donanemab will be sold under the brand name Kisunla™ and will be delivered via once-monthly IV infusion.  The annual drug cost of Kisunla alone – not including provider or administration costs – is set at $32,000, but physicians can consider whether to halt treatment once an amyloid PET scan indicates the patient’s brain amyloid level is sufficiently cleared; in the clinical trial, 69% of patients were able to end treatment by 18 months.

    The field expected that donanemab would be approved but some anticipated that the label, which guides physician prescription decision making, would narrowly define eligibility based on pathology and/or the absence of risk factors that increase potential side effects. However, the FDA label does not identify any comorbidities that should preclude treatment with Kisunla, but does indicate physicians should be cautious if a patient has risk factors for intracerebral hemorrhage such as pretreatment microhemorrhages or extensive white matter hyperintensities, use of anticoagulant (blood thinning) therapies, or MRI findings suggestive of cerebral amyloid angiopathy.

    The FDA label for Kisunla recommends genetic testing to determine APOE4 status due to the higher risk of serious side effects observed in people who carry two copies of APOE4. The label directs physicians to confirm the presence of amyloid pathology prior to prescribing Kisunla but does not recommend or require that the presence of tau pathology be established.  Four MRIs spaced out over the course of the earliest treatment months are indicated to assess the patient for the brain swelling, lesions, and bleeding side effects that are for most people asymptomatic but that can be in rare cases catastrophic. All of this testing will incur costs in addition to those of the drug and its administration.  For most eligible people, Medicare will cover some but not all of these costs.

    The approval of Kisunla comes one year after the approval by the FDA of another treatment for Alzheimer’s disease, Leqembi. In contrast to Kisunla, a year’s supply of Leqembi currently costs $28,000, infusions are every two weeks, and there are no validated criteria for when treatment can be stopped. Read more about Leqembi here https://curealz.org/news-and-events/fda-awards-full-approval-for-leqembi/

    Read more about the review of donanemab here https://curealz.org/news-and-events/advisory-committee-to-fda-recommends-approval-of-alzheimers-drug-donanemab/


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