Faced With Alzheimer’s Disease, We’re Buoyed by Grace

Ray Burow avatar

by Ray Burow |

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Last Wednesday would have been my mother’s 94th birthday. While she wasn’t famous, she was an exceptional person before Alzheimer’s disease claimed her life, and she is the inspiration for this column.

Of course, there was no guarantee that without Alzheimer’s she would have lived long enough to witness her youngest grandchild’s high school graduation this year, or countless other events that have happened since she left us nearly a decade ago. However, given her parents’ age at their passing, it wouldn’t have surprised me if she’d have surpassed the nonagenarian years if she’d survived Alzheimer’s.

I think of my mother every day, but as I write this, I’m a little surprised at how much I miss her. What’s not surprising, though, is how fervently I detest Alzheimer’s disease.

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A despicable disease

I despised my mother’s Alzheimer’s diagnosis in 2003. I loathed the ravages the disease brought upon her. It’s impossible to fathom what Alzheimer’s does to a person until you actually walk with them during this difficult journey.

I imagine that if you’re reading this, you might have reason to hate Alzheimer’s disease, too. Perhaps like me, you might be mourning the slow and final loss of a parent. Or maybe you’ve been diagnosed with early-onset dementia and are in the grips of fear.

Detesting this disease is fine — in fact, let’s hate it together. But as we do, let’s not lose sight of the power of grace. We may be treading dark waters, but grace is a life buoy that raises us up and prevents us from drowning.

Signs of progress

My mother was diagnosed with the most common form of dementia two decades ago, and even then, she had access to good healthcare, medication, and a clinical trial that helped to slow its progression. Fast-forward to this year, and scientists and researchers are diligently working to find a cure. And they seem to be getting closer.

Last year, the U.S. Food and Drug Administration approved Aduhelm (aducanumab) as the first new Alzheimer’s drug in 20 years. While there are some concerns about its approval, such as the exorbitant cost for patients and possible negative side effects, Aduhelm does look promising.

Designed to help clear amyloid plaques from the brain of Alzheimer’s patients, Aduhelm is a significant milestone on the journey toward finding a cure. With continuous scientific research happening, more medications like this will certainly follow. I believe we will eventually reach a cure.

Alzheimer’s research funding increases

In 2019, Alzheimer’s research funding reached an all-time high in the United States. That year, Congress announced a $350 million increase proposal for Alzheimer’s and dementia research funding at the National Institutes of Health for the following year, according to the Alzheimer’s Association. Its passage boosted funding in this area to a whopping $2.8 billion.

Alzheimer’s research funding has increased because the disease is gaining more national attention, thanks to the support of the U.S. federal government and nonprofit organizations. The Alzheimer’s Association, the U.S. National Institutes of Health, the National Institute on Aging, and the Alzheimer’s Drug Discovery Foundation are currently funding such research, including clinical trials, which increased in frequency last year, thanks particularly to academic medical centers.

More of this kind of attention is a good thing, and there are more clinical trials today than ever before.

Bolder claims

The Alzheimer’s Association has boldly claimed that the “first survivor of Alzheimer’s disease is out there.” That hope didn’t exist for my mother, and no one spoke of a cure during her lifetime. Imagine if the first survivor of Alzheimer’s disease really were living today. Could this be true?

Maybe your loved one will survive this disease. Or maybe you will.

Hatred may be the fuel that drives us toward a cure for Alzheimer’s disease, but grace buoys us while we wait. My mother isn’t here to celebrate her birthday. If she were, I’d make a beautiful cake with candles, blow them out, and wish for a cure for her disease. I can’t make that wish for her, but I want it to come to fruition all the same.

Happy birthday, Mom!


Note: Alzheimer’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Alzheimer’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Alzheimer’s disease.

Comments

Cynthia Whalen avatar

Cynthia Whalen

I was recently diagnosed with early Alzheimer’s Disease,,I just can’t Beleive it.
I am reading every thing I can get my hands on NOT ME, I know no one at this point in my big FAMILY THAT HAS
had the decease.
How do I find a support group in my area ???? Do I keep it a secret till I know more about it,, or keep praying that they were wrong with the diagnosis.
I go to the Cleveland Clinic in Cleveland Ohio . HELP PLEASE IF YOU CAN.......I

Reply
Ray Burow avatar

Ray Burow

Cynthia,

I am so sorry to read about your diagnosis. I can hear the desperation in your comment. I am certain that I would feel the same way, but I encourage you to take a deep breath. It is natural that the diagnosis has taken your breath away, but you shouldn't attempt to grasp it all at one time. It's very good that you are educating yourself regarding your diagnosis, but it is equally important to slow down to process the news. Information is power, but information overload can be stifling.
You mention "praying that they were wrong with the diagnosis." I believe in prayer, but as you pray, don't fall into denial. Seek a second opinion if it helps you to move forward with the next steps.
The fact that you were diagnosed early works in your favor. There are medications available to help keep the disease at bay, and even last year Aduhelm was approved by the FDA for patients in the early stages of the disease. Not to say, this is your answer, but to let you know there's hope in your situation.
Enrolling in a clinical trial is extremely helpful. An Alzheimer's specialist at the Cleveland Clinic might be able to direct you to the right one or visit the Alzheimer's Association website (Alz.org) for information on clinical trials. There are many resources available to you., such as The Dementia Map. Use it to locate resources within your local area (https://alzheimersnewstoday.com/2020/12/21/dementia-map-resource-caregivers-professionals).
Regarding whether to keep your diagnosis a secret; You may wish to be selective with whom you share the news at this stage. However, a trusted friend or family member who loves you is invaluable. Consider sharing the diagnosis with someone you love and trust and who can help you to navigate the days ahead. You need an advocate with your best interest at heart.

My friend, I am praying for you right now and wish you the best in your Alzheimer's journey. There's hope. Not to say it won't be difficult, but compared to just a few years ago, the outlook is better. Thank you for sharing your story.

Prayers!
Ray

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marijyn Lobo avatar

marijyn Lobo

Thank you for your beautiful article and expression of love for your mother. I was diagnosed 7 months ago and it was horrifying. One of my daughters is loving and supportive and the other is not. .I sold my home and moved to an assisted living facility near the caring daughter in Key West. It is wonderful because i am still independent and walk at least 3 miles a day along the beautiful beach. I take supplements and tumeric and BELIEVE they are helping me. I am 75 years .old. .. I am Catholic and blessed to be close to Saint Mary Star Of the Sea Basilica and Grotto..Spending time there gives me peace and Joy.. Let us bind together in prayer for a cure for this wretched disease.

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