If Alzheimer’s disease isn’t a secret, then why are we whispering?

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Alzheimers Research Funding Lags Other Diseases- Dementia – AARP.  The January/February 2015 AARP Bulletin focuses on the prevalence of Alzheimer’s disease in America.  The cover contains photos of fifteen celebrities who died from the disease.  Some of those spotlighted may surprise you because their cause of death was not broadcast to the media.

What a shame.

Quiet 2It’s a shame that the stigma attached to the disease still manages to relegate Alzheimer’s to the closet.  Cancer used to be that closeted disease – so much so that many years ago people shied away from even mentioning the word, preferring to call it “The Big C.”  Before Alzheimer’s disease, cancer was the whispered disease but now the populous embraces each and every body part afflicted, even those considered of a private nature: breast, ovary, prostate, rectum.

Alzheimer’s disease and other dementia are centered in the brain: grand central station for the essence and identity of the human body.  When speaking of someone with Alzheimer’s we don’t even need to employ gentle euphemisms such as might be the case for cancer-ridden bodies: booby, reproductive system, male gland, and such.  You can say the word b-r-a-i-n as loud as you please and no one will accuse you of saying an inappropriate word, but that all changes when your brain, or that of a loved one, starts to fail.  We glibly address their symptoms as brain farts or senior moments, not wanting to come to terms with the fact that the body’s very center of person-ness is at risk.Quiet 3

But we take every opportunity to walk or run to raise money for cancer, whether 5K in an hour, or 60 miles in three days.  (I’m a strong proponent, believe me.) We carry signs asking for a cure for body parts about which one used to only speak in the privacy of ones doctor’s office.  The U.S. government “has committed some $5.4 billion this fiscal year to cancer research, about $1.2 billion to heart disease and $3 billion to research on HIV/AIDS. Research funding for Alzheimer’s will reach only about $566 million.”  The good news is that all that attention and funding has worked.  Whereas in the past, cancer almost always claimed the life of its victim, current survival rates are off the charts.  And heart disease no longer means heart failure and eventual death.

Alzheimer’s disease is always fatal.

No one has survived the disease to become its biggest spokesperson.

No one.

Shameful.

The above AARP article shines a spotlight on one young person who is doing his best to bring Alzheimer’s out of the closet and front and center.  Seth Rogen stated the following to a Senate hearing last year.

Americans whisper the word “Alzheimer’s” because their government whispers the word “Alzheimer’s.  It needs to be yelled and screamed to the point that it finally gets the attention and the funding it deserves and needs.Shouting emoticon

You see, yelling and screaming worked for cancer, HIV/AIDS, and heart disease.  It didn’t work for my father, however.  Prostate cancer killed him because Alzheimer’s disease rendered his body unable to withstand the very treatments that would have saved his life.

I’m not bashing cancer survivors; I’m not bemoaning treatments that extend the lives of those suffering from heart disease.  I’m just begging for equal treatment for a fatal disease that hasn’t received any substantive good news since it was first discovered in 1906.

All of us can say we know of someone who beat cancer; none of us can say the same about Alzheimer’s disease.

A few resources for the reader: Alzheimer’s Association, Alzheimer’s Foundation of America, National Institute of of Neurological Disorders and Stroke

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2 thoughts on “If Alzheimer’s disease isn’t a secret, then why are we whispering?

    mebipolarandmotherhood said:
    January 12, 2015 at 12:35 pm

    Reblogged this on Mental Health Support In Pregnancy & Motherhood and commented:
    So true their should b no shame in any illness, but unfortunately their is still stigma….

    Jill Weatherholt said:
    January 12, 2015 at 7:40 am

    Well said, Irene. Thank you for writing this.

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