Cover Picture

What IF?!

in Interesting
Hype
Shares

Didn't watch the SuperBowl. I couldn't. WHY?

Because, as I've been teaching for decades: CTE is real; TBIs are traumatic; depression from brain damage is inevitable; football, soccer, and most sports cause all; and ALL, alas, attest Betty's Tip – Football is BAD4Brains!™

What IF? … and Other Questions Screaming in My Brain©

The NFL held a symposium over SuperBowl weekend. WHY only now? WHY not in 2012, when I offered Betty's Programs (as always, free to Families) to Chicago's  NFL Players' Association?

WHY, whenever CTE/TBI/dementia is detected, it's a surprise? WHY is it a surprise when studies of two different NFL players’ brains report two different results? 

On any Sunday – and twice, please, re the SuperBowl – it’s worth taking a fresh look at Alzheimer’s disease and dementia – from a scientific-and-Spiritual perspective. 

Betty’s Tenet™ – Snowflakes

WHAT IF: NO two people in the history of humankind are alike? WHAT IF God [defined as He and/or She and/or They and/or your personal belief/description] designs each to be unique? WHAT IF humans are like snowflakes?

WHAT IF God designs us Purposefully? WHAT IF God sends us and our brains, ‘pre-programmed’ from God’s Factory to do God’s Work? WHAT IF some brains are Meant for Music; others for Literature; others in Compassion? ... and so on, into Infinity?

WHAT IF brains are Meant to be both unique and infinite? 

WHAT IF brains ARE like snowflakes?

WHAT IF therefore: NO two brains are – ever will be – alike.

WHAT IF therefore: NO two brains are – ever will be – affected in the same way(s) by Alzheimer’s/dementia or TBI or CTE or concussion or PD or PTSD or depression or [insert here anything causing Thinking Not Working™].

WHAT IF therefore: NO two brains will – ever – manifest the symptoms of Alzheimer’s / dementia / brain injury / drugs / aging in the same way(s).

WHAT IF therefore and also: No ONE brain, on any Sunday – or hour or 10-minute period – is affected by and/or manifests the symptoms of Alzheimer’s /dementia the same way(s).

[And YES, I intentionally changed literary forms; and NO, one of them is, for me, a question. Back to my proposition....]

THEN: Of course any study of two different brains will yield different results.

Therefore: WE MUST STOP the Insanity!

WE MUST STOP trying to ‘prove’ or ‘disprove’ the presence of Alzheimer’s or dementia by comparing DIFFERENT people’s brains.

More than 30 years ago, I began to ask that very question. It still SCREAMS in my brain – and in my work and ADvocacy™ for Betty’s Families and @BettysLove on Twitter, too.

Rightly screamed. I have Alzheimer's in both bloodlines for at least two generations. I am a daughter, three-times granddaughter, and six-times niece of Alzheimer's disease and dementia. 

My earliest personal experience of dementia (“senility” it was called) was in 1963. My first advocacy came during nursing-home visits in 1975. My first serious research into brains began in 1982. My most recent research was this week – a true statement no matter when you’re reading this). God bless (alas, mostly non-American) research freely accessible on the Internet. 

Thirty-five years ago, I first studied Alzheimer's.  In a public library on Chicago’s Southwest Side, I pored over back copies of The New England Journal of Medicine on behalf of my favorite uncle “Carlo” and his family. A lifelong carpenter, Carlo began forgetting how to use tools, do simple carpentry jobs, recall recent events. He was diagnosed with “Altimer’s.” I didn’t know what it was, how to spell it, or, clearly, how to pronounce it.

Yet-more SCREAMING: WHY is that still the case for too-many families in 2017? WHY is that still mispronounced today?!

My discovery process – born of a journalism degree and Emmy® Award-winning investigative reporting – yielded: little information; less proactive prescription; and no hope for a family.

STILL screaming: WHY is that still the case for so many families in 2017?!

The research yielded the same nothing-ness – and confusion. Uncle Carlo’s journey was three years of rapid cognitive decline – then seven years without speaking, living in a nursing home and barely engaging (if at all). Though his family members were Loving and attentive and visited regularly, I was not allowed to see him. That decision – i.e., my acceptance thereof – haunts me, screamingly, still.

My research accelerated several years earlier, when our Mom, 'The' Betty, began getting lost, repeating things, and acting unlike herself. For the second time, I heard “Altimer’s” – and concluded: “There's nothing we can do. Life is over.” I moved back to Chicago, quit my travel-based career, and vowed to see Mom every day.

Readily apparent: Mom's journey was nothing at all like Uncle Carlo's. Mom remained: cheerful, kind, and generous; clever, engaging, and active; still minding children, keeping house, and making spectacular conversation; Hopeful; herself. 

Nearly 10 years in, the commonest comment I and my siblings heard was, “There’s nothing wrong with your Mother!”

Read A Lovely Irish Tale© – with Mom and Dad!

WHY so different?

A few years after Mom’s diagnosis, her sister – my beloved Aunt “Dot” and Uncle Carlo’s wife – was diagnosed with “Alzheimer’s, not dementia.”

[Doctors were still wrong, but making progress? NO. STILL screamworthy.]

Although Aunt Dot still enjoyed the beach, coffee, cigarettes, and her dog, Zack: her moods swung; her ‘memory’ retreated; and she was unable to live alone.  When Aunt Dot passed, Mom was still living semi-dependently, still cheerful, still engaged and engaging.

Same bloodline. Same smoking.  Same screaming: WHY so different? 

I’ve personally consulted to 7,500+ families (I stopped counting in 2010). Most are told by doctors – from GPs to neurologists to dementia ‘experts’ to research scientists – that their Mom, Dad, sister, or child “has Alzheimer’s disease.” 

Staggering: Only a handful of those brains had autopsy-confirmed Alzheimer’s disease. Literally: fewer than five; Mom and Uncle Carlo make two.

More staggering: Perhaps only 1% of the families I've met received what I consider a proper diagnosis. 

Still staggering: NO two people and NO two members of any one family has ever shared the same symptoms, concerns, and needs.

Sadly, I’ve been told by tens thousands of families worldwide (my guesstimate is 96+%) that they don’t know what constitutes a proper diagnosis. Sadder still, they don’t even know the difference between dementia and “Altimer’s” (by any pronunciation).

Saddest of all: Generations of families might be affected by ‘plaques and tangles’ or/AND any form of dementia or/AND any combination of either or both AND diabetes, depression, addiction, smoking, Down syndrome, Parkinson’s, PTSD, anesthesia, antihistamines, anxiety meds, cancer-chemo drugs, stroke, heart disease, insomnia, malnutrition, maloxygen, multitasking, aluminum, VOC toxins, toxic (fake) foods ... an almost-infinite lists of TREATABLE, CURABLE problems – ALL of which cause Thinking Not Working.

Families are not at fault. The ‘industry experts’ – including researchers, pharmaceutical companies, medical practitioners, billion-dollar care businesses, gloom'n'doom advertisements, most reporters, even apathy – continue to do withhold information. Continue to ‘silo’ findings. Continue to do families like yours (and mine) unconscionable disservice.

WHY don't they and so-called “charities” inform families: the differences between dementia and Alzheimer's? and the 20+ other forms of dementia? or even the latter's proper pronunciation?! or how to get a proper diagnosis?

Perhaps especially, I hold accountable said “charities” like the Alzheimer’s Association and other research/fundraising entities for: not supporting families; not sharing funded research; and obscuring how much of donation dollars actually go to those most in need: Moms and Uncle Carlos and Aunt Dots ... AND their families ... AND parents of children who will like live to 100.

WHAT IF bodies survive 100 years?

WHAT IF brains cannot?

Betty's Three Things I'd like to see:

3. Research conducted sans “silver bullet” and treatments affordable for everyone. 

2. ALL generations empowered and engaged in brain health.

1. Families embraced by all we CAN do in JOY.

'Til then – as 1, 2, or 3 is as unlikely as the proverbial water landing – I'll keep helping families in need. Whatever they need. Whenever they need it. Wherever they live. Every stage of their journeys. Always for free.

And always – sad but too-likely true – my brain will keep screaming: 

WHAT IF?! 

Niume community

user thumb user thumb
{{postData.response.imageUploadPercent}}% Complete
...show more ...show less
Hype {{comment.hype}}
Hype {{reply.hype}}
{{comment.response.imageUploadPercent}}% Complete

Facebook comments

Confirmation

Please tell us the reason for your report.

Reasons to Remove this post:

Add a comment (optional)

* please select at least one reason.

* unable to remove post.

Share: {{::postData.title}}

Your post has been published! Now share it to reach more people.

Make sure you check our Resources Page with tips and videos to increase the reach of your posts.

Confirmation

Are you sure you want to delete this post?