Alzheimer’s spurs the fear­ful to change their lives to de­lay it

The Washington Post Sunday - - FRONT PAGE - BY FREDRICK KUN­KLE

When Jamie Ty­rone found out that she car­ries a gene that gives her a 91 per­cent chance of de­vel­op­ing Alzheimer’s dis­ease be­gin­ning around age 65, she sank into a de­pres­sion so deep that at times she wanted to end her life.

Then she de­cided to fight back. She ex­er­cised. She changed her diet. She be­gan tak­ing nu­tri­tional sup­ple­ments, in­clud­ing fish oil, vi­ta­min D, vi­ta­min B12, cur­cumin, turmeric and an an­tiox­i­dant called CoQ10. She started med­i­tat­ing and work­ing mind-bending puzzles, such as Brain HQ. She joined a health clinic whose reg­i­men is shaped by a UCLA med­i­cal study on lifestyle changes that can re­verse mem­ory loss in peo­ple with symp­toms of de­men­tia. She started a non­profit group, Beat­ing Alzheimer’s By Em­brac­ing Science (BABES), to raise money and aware­ness about de­men­tia.

“I found my voice,” said Ty­rone, 54, a reg­is­tered nurse who lives in San Diego.

Per­haps the only thing as bad as Alzheimer’s dis­ease is the fear among a grow­ing num­ber of older Amer­i­cans that they­may be at risk of the neu­rode­gen­er­a­tive dis­or­der, which robs mem­ory and cog­ni­tive abil­ity and is the lead­ing cause of de­men­tia.

A 2011 sur­vey for the MetLife Foun­da­tion found that the only dis­ease more dreaded than Alzheimer’s was can­cer. A Harris Poll con­ducted in April for Aegis Liv­ing, an as­sisted-liv­ing and Alzheimer’s care com­pany, found that the wor­ries cross all gen­er­a­tions: more than75 per­cent of mil­len­ni­als, Gen­er­a­tion Xers and baby boomers worry about what will hap­pen to their mem­ory as they age.

Some, like Ty­rone, fear Alzheimer’s be­cause ge­netic test­ing shows that their risks are higher than for oth­ers. Many more fear Alzheimer’s be­cause they saw what the in­cur­able dis­ease can do. They saw a par­ent or other beloved rel­a­tive slip away in the twi­light of their lives through the steady ero­sion of mem­ory, cog­ni­tion and iden­tity as the dis­ease pro­gressed. Now they worry when­ever they mis­place some­thing or for­get a name, and vow that they will do what­ever they can to pre­vent or de­lay its on­set.

“It’s my night­mare: the loss of my mind; the in­abil­ity to rec­og­nize peo­ple who are dear to me; the abil­ity to think,” said Charles Gold­man, 71, a semi-re­tired at­tor­ney who lives in Sil­ver Spring, Md. Gold­man, whose mother had Alzheimer’s, said he is vig­i­lant for pos­si­ble lapses in his own mem­ory, but he also does ev­ery­thing he can to lower his risk of de­vel­op­ing de­men­tia. He works out at a Mont­gomery County recre­ation cen­ter. He reads like crazy, both fic­tion and non­fic­tion. He fol­lows the news about pos­si­ble new treat­ments or re­search stud­ies. He does the crossword puzzles of ev­ery Sun­day pa­per he can get his hands on. He gob­bles al­monds.

“I can ac­cept the idea I won’t be able to run 10K races. I can’t ac­cept not be­ing able to un­der­stand what peo­ple are say­ing or rec­og­nize peo­ple.”

Joanne Omang, a for­mer Washington Post cor­re­spon­dent, also watched her mother die of Alzheimer’s and saw how de­men­tia trans­formed her and oth­ers.

“Peo­ple be­come like chil­dren in many ways. They steal food. They fight hav­ing baths. They be­come vi­o­lent in many­ways,” she said.

It’s dif­fer­ent than death, and in some­ways worse, the­way herown mother seemed to dis­ap­pear be­fore her eyes, Omang said.

Like oth­ers, that was enough to spur her into ac­tion. Omang doesn’t con­sider her­self a wor­rier, but “when I sim­ply can­not re­mem­ber the name of some­one or some­thing, when I know that I know it, I do ask my­self, ‘Is this a sign?’ ” she said in an e-mail. “I’m keep­ing count.”

So Omang eats blue­ber­ries ev­ery day, hav­ing seen stud­ies sug­gest­ing that the fruit is ben­e­fi­cial for brain health. She hits the gym al­most ev­ery day for strength and aer­o­bic work­outs. She does word puzzles and keeps up the Span­ish skills she honed as a for­eign cor­re­spon­dent. And she said that if she should de­velop de­men­tia, she will moveto a state that per­mits eu­thana­sia so that she can die in peace.

“I don’t want to be a bur­den to any­body like that,” Omang said. “There’s noth­ing worse than this dis­ease.”

More than 5 mil­lion peo­ple are liv­ing with Alzheimer’s, and as the pop­u­la­tion’s me­dian age rises, the num­ber of cases is ex­pected to in­crease to 13.5 mil­lion by 2050, ac­cord­ing to the Alzheimer’s As­so­ci­a­tion.

“The bad news is we think Alzheimer’s af­fects half of ev­ery­one over 85. So we’re all in this to­gether,” said Eric M. Reiman, ex­ec­u­tive di­rec­tor of the Ban­ner Alzheimer’s In­sti­tute in Phoenix.

But the risks can also be over­stated, es­pe­cially for early-on­set forms of de­men­tia. Un­less one has a ge­netic pre­dis­po­si­tion, Alzheimer’s strikes the ma­jor­ity of peo­ple af­ter they reach the age of 65, ac­cord­ing to the Alzheimer’s As­so­ci­a­tion. A history of high blood pres­sure, di­a­betes, smok­ing, obe­sity or car­dio­vas­cu­lar prob­lems in­creases one’s risks of de­vel­op­ing de­men­tia.

But ag­ing it­self is the big­gest risk fac­tor: The longer you live, the more likely you are to de­velop Alzheimer’s or de­men­tia.

Dal­las An­der­son, pro­gram ad­min­is­tra­tor for pop­u­la­tion stud­ies for Alzheimer’s and de­men­tia at the Na­tional In­sti­tute on Ag­ing, said a healthy, 65-year-old woman has about a 17 per­cent chance of de­vel­op­ing Alzheimer’s. It’s 9 per­cent for men, partly be­cause their ex­pected life spans are shorter, An­der­son said.

Height­ened risks for Alzheimer’s also come from car­ry­ing cer­tain genes.

The most clearly doc­u­mented risk comes from hav­ing DNA for apolipopro­tein E-e4, a vari­a­tion of a gene that codes mol­e­cules to trans­port choles­terol through the blood­stream. This gene raises one’s risk of late-on­set Alzheimer’s by 10 per­cent for peo­ple older than 65, and by 50 per­cent for those over 85. Hav­ing two of these genes — one from each par­ent — as hap­pened with Ty­rone, in­creases the risks even more, though even then it is by no means cer­tain that the per­son will de­velop de­men­tia.

Early-on­set Alzheimer’s can strike be­tween 30 and 60 years old, but it’s also the rarest form of the dis­ease. Only about 5 per­cent of all Alzheimer’s cases in­volve early-on­set. Most of those are caused by a mu­tated gene in­her­ited from a par­ent that af­fects chro­mo­somes 21, 14 and 1, each of which can cause ab­nor­mal pro­teins to form. The odds of in­her­it­ing the gene from a par­ent are 50-50. If the per­son does in­herit the ge­netic mu­ta­tion for fa­mil­ial Alzheimer’s dis­ease, he or she will al­most cer­tainly de­velop de­men­tia at the same age as the par­ent who de­vel­oped the dis­ease.

But as sci­en­tists shed more light on pos­si­ble causes and risks, stud­ies have pointed to pos­si­ble, if not fully proven, mea­sures that may at least post­pone the ap­pear­ance of symp­toms.

One such study was per­formed at the UCLA Mary S. Eas­ton Cen­ter for Alzheimer’s Dis­ease Re­search and the Buck In­sti­tute for Re­search on Ag­ing. The study, writ­ten by Dale E. Bre­desen and pub­lished last year in the online jour­nal Ag­ing, found that a 36point ther­a­peu­tic pro­gram re­versed symp­toms of mem­ory loss among par­tic­i­pants.

Their care­fully pre­scribed reg­i­men in­cluded di­etary changes, vi­ta­min sup­ple­ments, stim­u­la­tion with online brain teasers, phys­i­cal ex­er­cise, op­ti­mized sleep and some med­i­ca­tions. The re­searchers ac­knowl­edged that their study sam­ple was small but also sug­gested that the re­sults were wor­thy of fur­ther ex­pla­na­tion.

But An­der­son said peo­ple need to be re­al­is­tic.

“What­ever steps they take — whether it’s diet or ex­er­cise or stay­ing so­cially en­gaged or cog­ni­tively ac­tive— those steps will not guar­an­tee that the in­di­vid­ual will be spared,” An­der­son said. “I think the best thatwe can hope for right now is to post­pone the con­di­tion. It’s not pre­vent­ing — it’s post­pon­ing. And that’s not shabby. If some­body can get an ex­tra five years of in­de­pen­dent liv­ing, that’s big.”

Af­ter all, he said, a lot of the pos­si­ble strate­gies for re­duc­ing Alzheimer’s risk are not un­like chicken soup: “They­may not help. But they couldn’t hurt.”

Ty­rone found out about her ge­netic dis­po­si­tion for Alzheimer’s by ac­ci­dent. She sub­mit­ted to ge­netic test­ing af­ter notic­ing prob­lems with her bal­ance and wor­ry­ing she might have mul­ti­ple scle­ro­sis. In­stead, she dis­cov­ered that she had near-cer­tain odds of de­vel­op­ing Alzheimer’s be­cause she had in­her­ited an Apo E4 gene from each par­ent.

It sud­denly made sense, be­cause Alzheimer’s had struck Ty­rone’s fam­ily sev­eral times. Onher mother’s side, her great-grand­mother, grand­mother and two great un­cles had suf­fered from de­men­tia; so did her fa­ther, whose Alzheimer’s di­ag­no­sis was con­firmed by au­topsy.

“Emo­tion­ally, I went into a dark hole. I’m fright­ened, I’m scared, I’m alone, I’m iso­lated,” she re­called feel­ing at the time. She couldn’t dis­close the re­sults be­yond her im­me­di­ate fam­ily for fear that she would be dis­crim­i­nated against by em­ploy­ers or by in­sur­ance com­pa­nies. Re­li­gious be­liefs pre­vented her from tak­ing her own life, she said.

Then she over­hauled her life, in­clud­ing her diet and habits. She went on the Pa­leo diet and be­gan work­ing with David Clay­ton, a physi­cian whose To­tal Health Cen­ter in San Diego helps peo­ple su­per­vise a reg­i­men of diet, in­tense ex­er­cise and brain stim­u­la­tion. She be­came a self-de­scribed “lab rat.” She en­rolled five years ago in a study at the Ban­ner In­sti­tute that re­quires two full days of test­ing in Phoenix, in­clud­ing brain scans and cog­ni­tive and mem­ory tests, fol­lowed by check­ups ev­ery two years. She has also agreed to do­nate her brain to science af­ter she dies.

Ty­rone said she be­lieves her work could de­lay the on­set of Alzheimer’s by a few years, but she hopes for at least another 10 healthy ones. Even if the reg­i­men has not have given her com­plete peace of mind, she said, at least it has given her a re­newed sense of pur­pose. “I’m not as fear­ful as I was be­fore,” she said. “We­may not find a cure inmy gen­er­a­tion, but I be­lieve we will find a cure for the next gen­er­a­tion.”

SANDY HUF­FAKER FOR THE WASHINGTON POST

From left, Greg Verdon, Jamie Ty­rone and Bar­baraMetz take a fit­ness class last month at the To­tal Health Cen­ter in San Diego. Ty­rone, who car­ries a gene that gives her a 91 per­cent chance of de­vel­op­ing Alzheimer’s dis­ease start­ing at age 65, be­gan a reg­i­men of diet, in­tense ex­er­cise and brain stim­u­la­tion to try to bet­ter her odds.

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