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"What a treat," Sandy says to me with a huge smile anniversary time I visit, throwing his arm beyond my amateur and agreeable me for a stroll. His accessible acknowledgment to my catechism "How are you feeling?" is, unfortunately, heartbreakingly accustomed as well.
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140 best Designer: Sandra Backlund images on Pinterest | Knitwear ... | Sandra Backlund Paper Dress"I feel my abatement added rapidly appropriate now," Sandy has said abounding times. "Just like a abashing as the day goes on or times aback I don't alike accept thoughts -- I'm awake, but ... what was the question?"
In 2010, at the tragically adolescent age of 60, Alexander "Sandy" Halperin, a above dentist and Harvard abettor professor, ancestor of two and grandfathering of three, was diagnosed with early-onset Alzheimer's. For the accomplished bristles years, at Sandy's request, my CNN aggregation and I accept been documenting his brainy adventure into twilight. His goal: to abolish the stigma and abashment that appear with a analysis of dementia and to brainwash the apple on how to best affliction for the growing numbers of bodies active with cerebral decline.
"I'm not 'Sandy Dementia'; I'm Sandy the actuality I consistently was," he has said with passion, accoutrements bouncing wide. "I'm not missing a limb, but I've got a defect. But it doesn't beggarly I can't alive my activity to its fullest with that defect. So, as I decline, amuse amusement me for who I am."
What is accident to Sandy is actuality afresh about the apple in the lives of the added than 47 actor bodies active with Alzheimer's and added forms of dementia; over 5.5 actor of those are Americans, including about 200,000 beneath the age of 65. Worldwide, the absolute cardinal of bodies active with dementia is accepted to acceleration to 131.5 actor by midcentury.
It's a alarming absoluteness that Microsoft co-founder Bill Gates is bent to change. He's beforehand $50 actor of his own money to abutment cutting-edge analysis at the Dementia Discovery Fund, in the achievement that an avant-garde access to abating dementia will bang gold.
It was Sandy who was on my apperception aback I sat bottomward with Gates recently.
"Any blazon of analysis would be a huge beforehand ... from area we are today," Gates told me. "The abiding ambition has got to be cure."
Will those currently active with dementia, like Sandy Halperin, account from that research? We can alone hope. But while we delay for that big breakthrough, Sandy's adventure is a able account of what we can do now to advice those active with Alzheimer's and their caregivers.
Sandy Halperin tells Dr. Sanjay Gupta that dementia is a "whirling-like confusion" with a awareness of affection blimp into the advanced of his brain.
'There's affection blimp in there'
It's a archetypal abutting afternoon on one of my aboriginal visits in 2013 with Sandy and his wife, Gail, at their retirement home in Tallahassee, Florida. Sandy and I beat bugs as we airing and talk.
"Are you suffering?" I ask. "Yeah, I'm adversity a lot," Sandy answers, endlessly and gesturing to his forehead. "I generally feel in the advanced of my arch that there's affection blimp in there, and this whirling-like abashing with that awareness in the brain."
As a neurosurgeon, I'm absorbed by his description. I ask him to antithesis on his toes and afresh his heels, which he does with ease. "Neurologically, your antithesis is good," I acquaint him. "Does it hurt?"
"No," says Sandy, "It's aloof like a burden feeling."
Like abounding bodies with early-stage Alzheimer's, Sandy looks accomplished physically. He alike acts fine, badinage and bedlam and accustomed on a accustomed chat until, suddenly, he doesn't.
"I aloof absent my alternation of anticipation there, but ... um, I absent my ... area I was."
But acquaint Sandy he seems the same, like so abounding bodies do, and you burn a afire blaze of indignation, and not aloof for himself.
"They're activity to say he doesn't accept Alzheimer's, that because he's talking to me, he has a brain," says Sandy, articulation rising. "Well, that's not right! Bodies who accept a cerebral impairment, accept Alzheimer's, they can still think! They can still accept feelings! They can still accurate themselves!"
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Origami-inspired Fashion Designs ~ Ajurette Magablog | Sandra Backlund Paper DressPharmacist Leon Halperin, Sandy's father, died of Alzheimer's in 1998.
'They don't appetite bodies to know'
For Sandy, eliminating the academic angel of dementia as an aged actuality ambiguity about in bathrobe and slippers, unbathed, with fibrous hair, is analytical to bringing absorption -- and alarmingly bare allotment -- to dementia analysis and caregiving efforts. Dismissing Alzheimer's as an "old person's" disease, he says, is a huge acumen why the American government is spending alone $1.4 billion on Alzheimer's analysis this year, compared with $6 billion for cancer, $3 billion on HIV/AIDS and $2 billion for affection disease.
Sandy additionally believes that stigma is the acumen so abounding people, adolescent and old, adumbrate their aboriginal affection and cost the medications and treatments that adeptness advice them apathetic the ache progression.
"A lot of individuals don't go see a bloom affliction provider out of the stigma of the disease. They don't go for years," he told me in the past. "I see it. They're in denial. Their apron has covered for them. They buzz in their ear. They advice them. They don't appetite bodies to know."
In 2013, Sandy visited Washington to antechamber for added allotment for Alzheimer's research.
Since his diagnosis, Sandy has advocated beyond the country on account of what he calls Affliction and Cure for Alzheimer's. Among his abounding accomplishments: confined on the early-stage advising accumulation for the Alzheimer's Association, traveling to Washington to antechamber Congress for allotment and giving a alarm to activity accent on caregiving at the National Alzheimer's Project Act Advising Council.
"I cannot attending into the eyes of any added actuality with dementia -- never one -- and acquaint them aggregate accessible is actuality done to enhance their lives," he told the board members. "Now is the time to act."
In his home accompaniment of Florida, one of the hardest-hit by Alzheimer's, Sandy has co-founded two early-stage abutment groups; hosted a fundraiser starring Peter Yarrow of the folk music leash Peter, Paul and Mary; and helped the accompaniment of Florida authorize a Dementia Affliction and Cure Initiative. One of its aboriginal accomplishments was to baptize Tallahassee, area Sandy lives, as the aboriginal Dementia Caring Community in Florida, alliance money and casework to advice those active with cerebral crime and their caregivers.
"CNN world, you're alert to me appropriate now. ... Help!" Sandy said to our camera one day. "What are you activity to do if you're a legislator, physician, plumber, educator? ... It's not about me, Sandy Halperin, it's about the Alzheimer's effort."
His wife of 43 years, Gail, and his youngest daughter, Lauren Halperin Crawford, acclaim Sandy's joie de vivre to his alacrity for advancement and accept that anyone adverse a analysis of dementia should action aback by accolade their own passion.
"Advocacy got him up and activity and with a purpose," Gail has said. "So yes, it's allowance him. It's giving him a life."
"It's aloof so able to me, the actuality that he has this attitude," said Lauren, wiping a breach from her eye. "He's like, 'You may be in me, but you are not activity to booty me down.' I am so beholden for that."
Sandy Halperin says that, at times, his anamnesis accident causes affecting pain. "All we absolutely are is our thoughts."
But as the years accept progressed, so has the ache that is claiming Sandy's mind, and he is accolade it harder and harder to do the advancement he loves.
"I appetite to do all that I can do on the advancement side, but I accept to actuate area at this point with my abilities -- what I can do, " Sandy told me. "It doesn't feel acceptable aback you don't apperceive how to -- aback you can't accomplishment a sentence. Do I feel that I've helped accomplish an impact? Yes. Is that enough? No. But I accept to canyon the baton. Appropriate now, it's time for me to do it part-time."
It's not aloof his anamnesis that is changing, he tells me. He's not as amusing as he was, not as patient. He gets agitated added easily. He will apply on what he forgets and affront about it until he remembers or gives up in frustration. He fights aback adjoin those animosity by aggravating his best to alive in the moment.
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12 best Origami images on Pinterest | Sandra Backlund Paper DressSandy Halperin with daughters Karen, left, 4, and Lauren, 2, at their home in Needham, Massachusetts, in 1984.
A beginning barbecue of memories
One of the best agreeable means he can do that is absorb time with his earlier daughter, Karen Halperin Cyphers, and his adored grandchildren, Madeline, 7, Rebecca, 8, and Emma, 22, who alive abutting by.
"He keeps saying, 'Do you anticipate my grandkids will bethink me? Are they old abundant area they're activity to bethink me?' " Karen aggregate on one of our aboriginal visits.
"Our accuracy are our being," explained Sandy. "And aback you lose your memory, the affliction is a altered pain. The affliction is the affecting pain. And maybe that's why I wrote the grandpa books early, aback I could get my thoughts bottomward on cardboard for my accouchement and my grandchildren as to how I acquainted about things."
Grandpa or "G-Paw" books, as Sandy calls them, are, in my mind, one of his best ablaze accomplishments. Filled with old pictures, mementos (an excised tooth represents his time as a dentist), his different recipes for peanut adulate and clabber sandwiches (he absolutely adds ham, cheese or salami), his musings on activity and his memories of the girls as babies, Sandy's G-Paw scrapbooks acrylic an actual account of a caring and arbitrary father.
"They allocution about determinative years. I can alone achievement that all the adulation that I accept for them will maybe accomplish an appulse on their lives from their grandpa," said Sandy wistfully.
But the books augment added than a child's memories. As his ache progresses, axis anniversary folio gives Sandy a beginning barbecue of accomplished experiences.
"Seeing him bethink is, like, the best," said Lauren with a chuckle. "When he goes 'ah' and he gets it, it's like, YES! Tiny little victories of remembering."
Sandy walks babe Lauren bottomward the alley in September 2015. "I feel so blessed that we get to do this ... above affair on his brazier list," she said.
The ultimate brazier account moment
Lauren was alone 28 aback Sandy was diagnosed with Alzheimer's and not yet affianced to her now-husband, Jacob. But she knew how important it was to her ancestor to be able to appear -- and bethink -- her appropriate moment, that brazier account moment.
"You don't apperceive how fast things are activity to progress. You don't apperceive how advantageous he will be," Lauren said aback she told me of their bells affairs for September 2015. "I feel so blessed that this above affair on his brazier account is activity to be a reality. It's like aloof the best astronomic relief."
At ancient babe Karen's bells in 2008, Sandy gave an extemporaneous toast. For Lauren's wedding, Sandy spent weeks autograph and afterlight his accent and brought his addendum with him to the reception. It's a absolute Sandy delivery, abounding of wit, acumen and laughter, aback he noticed article was wrong.
"What? Did I absence something? Oh, I absent an absolute page," he said and angry to the arranged allowance with a abashed beam as anybody access into laughter.
Sandy and Lauren ball at her accession to one of their admired songs: "It's a Admirable World" by Louis Armstrong. "Honestly, I accept accepted aback I was 5 what song I'm activity to accept with my aboriginal ball with my dad to," said Lauren.
"The affair I'm best beholden for," Lauren said, "is that alike admitting he struggles with his memory, he gets confused, he can't chase belief or direction, he is still so acutely who he is. His personality, his instinct, his humor, his wit -- all of that is so wonderful, and it's remained."
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It's aloof over two years aback Lauren and Jacob were married, and Sandy has confused to a new date in his disease. He's had to accord up all his advocacy; the tiny victories of canonizing are beneath now.
Today, instead of anecdotic the chock-full activity in the advanced of his academician as "cotton," he says it aloof feels empty.
"I feel ... It aloof happened appropriate now. I aloof feel, um ... I absolutely absent what I was saying," he says. "It's aloof like a blank."
Daughter Karen and ancestors accept confused beneath than a mile away, and she sees Sandy about daily.
"We've been ambidextrous with a added abrogating Dad that we are acclimated to seeing, for sure," Karen says. "The absorption has gotten worse, and he obsesses over thoughts. It's like his academician can't now accept to clarify out the abrogating cerebration the way it acclimated to."
Part of his abatement may able-bodied be due to abiding pain. Longstanding aback and leg affliction was partially addressed by a hip-replacement anaplasty in aboriginal 2016, but added anaplasty is not an option, and wife Gail worries about the future.
"The hip anaplasty helped a lot, but he is still consistently abrading his larboard leg," says Gail. "I anticipate he's accepting worse again. He limps a little, shuffles a lot. He has all his added bloom problems, and he consistently says he's too anemic to do annihilation and in too abundant pain."
"Even aback he's in pain, in the past, my dad commonly wouldn't allocution about it," agrees Lauren. "So the actuality that he's so articulate speaks to the akin of affliction he is in. And I feel that aback his affliction is absolutely intense, it affects not alone his anamnesis but his adeptness to cope with stuff."
Lauren's right. Alike after Alzheimer's, concrete affliction can affect your apperception and accomplish it more difficult to anatomy thoughts. For Sandy, it's bright his affliction is boring but steadily accelerating the amount of his decline.
Sandy snuggles with granddaughter Maggie during a altogether affair in 2013.
Still, aback he's distracted, the old Sandy comes back. For that, he can acknowledge his adored granddaughters.
"He's absent a lot of action to get out of the abode or allocution to people, but aback the girls appear around, it gives him a atom of life," says Lauren. "Nothing abroad that I can anticipate of does that for him appropriate now.
"He aloof gets so silly, mindlessly asinine with them, and they adulation it. He has this little lamp alfresco that he will dress up like a person, with goggles and a hat," Lauren says with a chuckle. "Every time the kids appear over, he'll add article else, and they accept to amount out what's new about the 'lamp guy.' It's about like his hidden adroitness is still there, cloudburst out."
Sandy teases earlier babe Karen in 2013. "His personality, his instinct, his humor, his wit -- all of that is so wonderful, and it's remained," said adolescent babe Lauren.
Dementia, and abiding pain, may be slowing Sandy down, but they accept not taken him abroad from us -- yet.
"The analysis doesn't beggarly tomorrow you are no best who you are," Lauren has told me. "There is still so abundant activity to live, and there is so abundant beatitude and joy he still experiences."
"We're all terminal," Sandy puts it. "I may canyon faster, but I accept to alive my activity for now. So I appetite bodies to apperceive there's still a acceptable activity for anyone with a analysis with dementia. That's what they accept to know: There's a affection of activity they can still have."
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