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Father’s Day – July 10, 2021

Daddy and I went to the 2020 Phoenix Open before COVID.
He spent the week with us and it was wonderful.

I am my father’s daughter. The eyes, the smile, the way we take pleasure in a good laugh, a good friend and a good turn of phrase. We are problem-solvers, he and I, but we are faced with a problem for which there is no solution, only grief.

In May, we moved him into Brookdale Senior Living Shreveport – Memory Care. We celebrated his first Father’s Day there in June. My mother helped him shower and dress.

“Make a touchdown,” I said, repeating his gentle coaching from more than 40 years ago when I was a child and he helped me get dressed for church or school. Daddy complied, thrusting both arms in the air, and Mom pulled the long-sleeved shirt over his head. 

Today is his 75th birthday, and the man that finished among the Top 5 in his age group at the 2012 New Orleans Half-Marathon is slipping away from us.

“I’m healthy here, but not there,” he says, pointing to his heart and then to his head. He says he “smashed his brain and it doesn’t work.” It’s how my father, the mechanical engineer, explains how his current world.

Vascular dementia is not Alzheimer’s dementia. While both involve physical damage to the brain, the cause of Alzheimer’s is still debated — amyloid plaques and neurofibrillary tangles and something about tau proteins — but vascular dementia is clearly understood: progressive damage caused by brain bleeds that seep into the different regions controlling thought, balance, memory, learning. Sometimes the cause is stroke. Sometimes, aneurysm. Tiny blood vessels in Daddy’s brain began leaking — Why? No one knows — but his iron-rich blood left microscopic metallic deposits in its wake, starting in the area where language forms. The alien invaders first stole his words, as he stumbled around “the white thing for my nose” to find “handkerchief.” As the damage progressed, it drew a shroud across the route back to the house and then the way to the bathroom and now, sometimes, my name. 

Four years ago, we received a diagnostic description of the strange patterns on the MRI and the cause of his lost words: Superficial siderosis. A rare, progressive and fatal condition. Two years ago, his Barrow neurologist, one of the world’s leading authorities on dementia, diagnosed a mild cognitive impairment — not Alzheimer’s, to his great relief. She gently warned us that it would progress, but that we could try to slow the inevitable end if he ate right, exercised, attended speech therapy and stayed socially active. A year-and-a-half ago, he had, in the words of his Mayo-trained neurosurgeon, “the million-dollar workup.” She cried when she delivered the verdict: That there was no hope at the end of her scalpel. 

Then COVID. Then seizures. Now memory care.

Two months ago, he had to leave home. Despite her best efforts, my mother could not continue to care for him there: He kept waking up in the middle of the night, turning on all the lights and wandering about the house. She could not leave him alone.

Now she tucks him in at night in his twin bed in the little apartment with a view of the courtyard and the birds that gather there. His new home is only 1.6 miles from his old one. He feels safe there, and we are grateful for that.

He is different now — a little unsteady on his feet, more than a little uncertain in his thought — but my Daddy is still there. My nephew introduced “Pops” to his girlfriend and said, “I finally got a girl to talk to me!” 

Daddy laughed out loud at that one. 

His sense of humor is still intact, and sometimes he cards on his fellow residents: “They’re so old!” he says. Even though his face is creased with worry that he doesn’t understand his current state, that the past is vanishing from his mind and that the future is too scary to imagine, he still laughs, and smiles that warm and friendly smile. My smile. 

We don’t ask him if he remembers something from long ago: It frustrates and upsets him and reminds him of what he has lost. Instead, we talk about the past with him as a full participant — which he was — and we meet him where he is. Sometimes confused. Sometimes afraid. Always gentle, always kind, always happy to have a laugh. 

Always my Daddy. 

For Father’s Day, we made him a shadow box for his apartment with pictures of the whole family and a short biography. He likes it much better than the old nameplate.

AZD-1222 Part 2: The Answer

Sitting inside the Arizona Coyotes hockey arena freezing my vaccinated ass off after receiving my second dose of Pfizer/BioNTech goodness.

I got a shoulder full of sugar.

As a fully informed volunteer for the AZD-1222 clinical trial, I had a 66 percent chance of receiving the AstraZeneca COVID-19 vaccine when I reported for duty on November 24, 2020 at a doctor’s office in Central Phoenix. As previously reported, within the first 48 hours, I suffered mightily most of the side effects associated with this vaccine:

  • Headache
  • Muscle ache
  • Fatigue
  • Diarrhea
  • Chills

Come to find out, those are also widely reported symptoms of middle age.

After my second shot on December 22, 2020, I experienced mild fatigue compounded by intermittent smugness: Though I brandished my gilded caveat of “well, we don’t really know for sure if I got the shot,” I was certain – certain – that I had been inoculated against the great scourge of the 21st century. I had put my body on the line again for SCIENCE and HUMANITY!

Yes, I continued to preach and practice the gospel of mask-wearing, hand-washing and social distancing, and I was certain I was doing my part to win the fight at both societal and cellular levels.

I certainly have an active imagination.

The placebo effect occurs when the brain persuades the body that a fake treatment is actually curative, triggering a physiological response. Here’s a fascinating study from Harvard Health about it. Though smarter people than I have confirmed this phenomenon, it doesn’t blunt the snickering coming from Pat Bertinelli.

“I’ve always said you have a really powerful brain,” he chuckled, as he departed to get his second dose of authenticated Pfizer/BioNTech vaccine on March 31.

At my third blood draw in January to test for my imaginary antibodies, I was re-consented into the clinical trial. Because mRNA vaccines from Pfizer/BioNTech and Moderna had begun distribution and the single-dose Johnson & Johnson/Janssen jab coming online, the AstraZeneca trial could not in good conscience keep volunteers like me from accessing potentially life-saving treatments. At the same time, they needed to maintain participation in the trial to ensure the safety and efficacy of their vaccine. They had settled on an elegant and ethical compromise: As new each new demographic became eligible for inoculation, we would secure a vaccination appointment and then call the trial administrator to be individually unblinded from the trial. That way, if we were in the test group, we could cancel our appointment and free up a vaccine for another person, or if we were in the placebo group, we could go ahead and get our shots.

But this was all a moot point because AstraZeneca would soon apply for emergency use authorization from the Food and Drug Administration and we would all be unblinded, likely as soon as early March.

It’s May.

We all know how that worked out: AstraZeneca vaccine tied to rare cases of rare blood clots. AstraZeneca reports dosing error in trial, delaying approval of vaccine. AstraZeneca misreports vaccine efficacy data in trials.

AstraZeneca’s crack team of communications “professionals” bungled basic communication practices and undermined faith in vaccines in general and their product in particular. Their jaw-dropping miscommunication has also thrown shade on the very good doctors, nurses and bench scientists doing the hard work on the ground to conduct the trial, and it’s annoyed volunteers like me who now get to field a ton of well-intentioned questions about a vaccine that I truly believe in because it SHOULD be easy to distribute to rural areas without a cold-chain infrastructure (if they can just get the damned shot approved).

I dedicated six years of my life to communicating complex scientific principles to everyday people. It’s not that hard to tell the truth in small words and big type so everyone can understand.

On March 24, Arizona opened COVID-19 vaccinations up to all adults, and I dutifully signed up and logged on, refreshing my screen about 200 times over two days and finally took the first available slot – 4:18 AM on Friday, April 2 at State Farm Stadium in Glendale, Arizona. Sure, it was at an ungodly hour at a six-hour drive from my temporary residence, but I didn’t care. I was certain – certain – I’d received the AstraZeneca vaccine back in November.

So on March 26, I called the AZD-1222 hotline to get unblinded so I could cancel my Arizona appointment and do the big reveal.

“Stacy Bertinelli? And can I have your birth date again? And your participant ID, please?” the trial administrator said, as I doodled on my calendar, ready to scratch out April 2.

“You’re in the placebo group.”

“Wait, what? Placebo? Can you check the spelling. That’s B-E-R-T…”

“All the data is correct. You’re in the placebo group, Mrs. Bertinelli. Please do not cancel your regular vaccine appointment.”

“But I had all the side effects – chills, muscle aches, worst headache of my life?”

“Well, Mrs. Bertinelli, the mind is a powerful thing – but we appreciate your continued participation in the trial. Please bring your vaccine card to your next appointment.”

Suffice it to say, I rescheduled my Pfizer / BioNTech vaccine to a more godly hour, following our return from California. I got to do the drive-thru at State Farm Stadium on April 11 and then got to return for a walk-thru at the Gila River Hockey Arena on May 2.

And for the side-effects? I was tired, took a nap and went to be early after each one, and my shoulder hurt with both shots, but fatigue, aches and pains accompany me through middle age.

If this has taught me anything: Science is still wonderful and vaccines give us hope. Go get your shot so we can all get back to living.

YOU’RE INVITED: KREWE OF HELIOS-AZ MARDI GRAS PARTY & PARADE, PART 7

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LAISSEZ LES BON TEMPS ROULEZ! It’s Mardi Gras time!
Come one, come all to the Seventh Annual Krewe of Helios-Arizona Mardi Gras Parade and Party!
Saturday, February 21, 2009
4PM – 11PM
Pat and Stacy World Headquarters
24952 N. 74th Place
Scottsdale, AZ 85255
View Larger Map“>(Google Map)
Now most of you have been to one of our six previous adventures and already have the hang of how to celebrate Mardi Gras with the professionals from Louisiana. (Rule 1: don’t take off your clothes. SERIOUSLY. Do NOT take off your clothes.) But since many of you are NOT from the Pelican State and only have drunken recollections from college friends and “Girls Gone Wild-New Orleans” videos to go by, we’ve included the following handy guidelines for how to celebrate Mardi Gras the Krewe of Helios-Arizona way, aka – how you can get fed, fill up on hurricanes, avoid choking on plastic babies, score lots of beads and survive with your liver intact (though slightly compromised). Please read on for the wholesome goodness, aka What can you bring?

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SAVE THE DATE: Krewe of Helios-AZ Mardi Gras Parade & Party – February 21, 2009

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If today is the Epiphany, then Carnival Season is upon us… and that can only mean one thing:
1) You have no idea what I’m talking about (so you can go ahead and skip this entry)
2) You’re not Catholic (and neither are we)
3) You’ve had a hankering for a hurricane for the last three days, which means…
THE 7th ANNUAL KREWE OF HELIOS-ARIZONA MARDI GRAS PARADE AND PARTY IS RIGHT AROUND THE CORNER!
Yes, it’s already been a year, so your livers and taste buds should be back in working order in time for the onslaught of olfactory pain known as Pat and Stacy’s Krewe of Helios-Arizona Gumbo, our authentic Louisiana red beans and rice, real Pat O’Brien’s Hurricanes (limit 2), true Sicilian muffalettas, and new this year, the redneck rampage known as Gene’s Garlic Cheese Grits (with jalapenos and bacon)… and who can forget the legendary Mardi Gras king cake shipped direct from New Orleans to hop your kids up on so much sugar you could have just as easily given them Red Bull with espresso chasers.
Come one, come all, come get as close as you can to the Big Easy without having to disrobe on public streets while little old ladies elbow you to grab trinkets worth less than a penny a piece. We’ll have advice on how to celebrate Mardi Gras in a later posting – for now, we just want to get on your dance card:
WHAT: KREWE OF HELIOS-ARIZONA MARDI GRAS PARADE AND PARTY
WHEN: SATURDAY, FEBRUARY 21, 2009 from 4 PM* to 11 PM
WHERE: PAT AND STACY WORLD HEADQUARTERS ~ 24952 N. 74th PLACE, SCOTTSDALE, 85255
WHY: Because you need to celebrate Mardi Gras with the professionals.
*The parade will step off at 4; if you miss it, you likely won’t get fed and won’t catch any beads.
Laissez les bon temps rouler!
Stacy and Patrick Bertinelli
Krewe of Helios-Arizona
Captains and Co-Founders

Gratitude

Thanksgiving is my favorite holiday (aside from December 9, which is National Day of Celebration for the Birth of Stacy Feducia – mark your calendars). And on this Thanksgiving morning, I awoke to the sound of raindrops at my window – football weather in the desert – and I realized that I have so much to be thankful for on this grateful day…

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