she suffered the first of a series of nervous breakdowns: Author’s interview with Karla Hornstein, May 6, 2016.
which Gail euphemistically referred to as “a learning experience”: Author’s interview with Gail DeMoe, March 5, 2013.
St. Cloud would become Moe’s home for the next seven years: Medical record of Galen DeMoe, St. Cloud VA Medical Center, December 5, 1978–January 8, 1986.
“I want to go home and be with my kids”: Medical record notes, May 7, 1979.
A nurse reported that he was “sitting in the dayroom sobbing as though his heart would break”: Medical record notes, August 1979.
By August 1980, Moe could not remember the names of all his offspring: Medical record notes, August 1980.
By April 1985, he could not consistently respond to his own name: Medical record notes, April 3, 1985.
He sat strapped into a chair designed for geriatric patients: Ibid.
“I think the day Dad left”: Author’s interview with Karla Hornstein, January 27, 2013.
I don’t want you and Mother to figure that it was your fault: Undated letter from Brian DeMoe to his father, postmarked February 19, 1975.
If he’d asked Debbie to marry him back then, she would have: Author’s interview with Debbie (Thompson) Ness, April 10, 2014.
They met at a dance in the eighth grade: Author’s interviews with Karla and Matt Hornstein, July 2012.
“I don’t know what draws people together”: Author’s interview with Matt Hornstein, October 8, 2015.
He verbally berated Christy: Author’s interview with Christy Holm, July 2012.
But there was also a side to Brian that endeared him to people, especially Gail: Author’s interview with Gail DeMoe, July 2012.
Hydergine, an extract of a fungus that grows on rye: “Summary of Data for Chemical Selection: Hydergine,” Technical Resources International, Inc., December 1999.
The drug was developed by Albert Hofmann: Ibid.
“I understand that the reports and data collected from this investigation may not directly benefit me in the treatment of my disorder”: Information About the VA Cooperative Study (#32) on Pharmacotherapy of Chronic Organic Brain Syndrome, VA Form 10-3518-22, January 1978; signed by Galen DeMoe on April 5, 1979.
The study enrolled patients from nine VA facilities: Details of the study in which Moe was enrolled are from Grant Huang, acting director, Cooperative Studies Program, Department of Veterans Affairs Office and Research Development, in an email to the author dated March 27, 2015.
with most concluding that its benefits were extremely modest at best: T. L. Thompson et al., “Lack of Efficacy of Hydergine in Patients with Alzheimer’s Disease,” New England Journal of Medicine, August 16, 1990; J. Olin et al., “Hydergine for Dementia,” Cochrane Database of Systematic Reviews, 2001.
SIX: THE GHOSTS OF ANOKA
Though Karla knew her grandmother also had the disease: Author’s interview with Karla Hornstein.
Karla was flattered by the researchers’ attention: Author’s interview with Karla Hornstein.
A mother of four, June White began her career as a registered nurse: Author’s interview with June White, April 12, 2013.
Heston, a psychiatrist and geneticist: For more background on Leonard Heston, see Robert Katzman and Katherine Bick, Alzheimer Disease: The Changing View (Cambridge, MA: Academic Press, 2000); entry on Heston, including an interview by Robert Katzman, beginning on p. 150.
Before she left, she called Heston: Author’s interview with June White.
he was moved to the Americana Nursing Home: Medical record of Galen DeMoe, St. Cloud VA Medical Center, January 8, 1986.
Karla hated to admit it: Author’s interview with Karla Hornstein.
The autopsy report was dated June 9, 1989: Autopsy report of Galen DeMoe.
“It was an exciting project”: Author’s interview with Peter St. George-Hyslop, April 4, 2013.
occurring in only 1 to 5 percent of all Alzheimer’s patients in the world: National Institute on Aging, “Alzheimer’s Disease Genetics Fact Sheet,” accessed February 2, 2015.
“We were literally plucking markers out of the air”: Author’s interview with Jerry Schellenberg, March 29, 2013.
Schellenberg was waiting for a printout: Author’s interview with Schellenberg; Tanzi and Parson, Decoding Darkness, pp. 147–148.
Karla received a note: Letter from Leonard Heston and June White to Karla Hornstein, October 20, 1992.
The letter came with a copy of the Science article: Additional coverage of the discovery included Jean Marx, “Familial Alzheimer’s Linked to Chromosome 14 Gene,” Science 258, October 23, 1992.
Karla wasn’t really sure what any of it meant: Author’s interview with Karla Hornstein.
even Auguste Deter: Ulrich Müller et al., “A Presenilin 1 Mutation in the First Case of Alzheimer’s Disease,” Lancet Neurology, December 14, 2012.
Yet Hyslop thought their lack of financial resources might have had an unexpected benefit: Author’s interview with Peter St. George-Hyslop.
Hyslop waited until he was absolutely certain they’d identified the gene: Ibid.
SEVEN: UNTAMED HEARTS
“Grandma had her own secrets”: Author’s interview with Karla Hornstein, January 27, 2013.
Everyone in the oil patch has a nickname: Author’s interview with Dean DeMoe, July 2012.
becoming dependent on them: Author’s interview with Karla Hornstein.
Even so, she always thought of them as close: Author’s interview with Jennifer DeMoe, July 2012.
In the nearly four decades Steve McIntyre spent working on the railroad: Author’s interviews with Steve and Lori McIntyre, May 2012.
Every birthday cake the girls ever had: Author’s interview with Robin McIntyre, September 2, 2012.
Dean regularly did the jobs of seven men: Author’s interview with Deb DeMoe, March 16, 2012.
He sometimes jokingly referred to weddings as “another funeral”: Author’s interview with Tyler DeMoe.
Monte was driving a work truck: Author’s interview with Monte Olson, March 7, 2014.
Dean finally met his match: Author’s interviews with Monte Olson and Deb DeMoe.
The loser had to make milk shakes: Author’s interview with McKenna DeMoe, July 2012.
“I never really got to hang out with him”: Author’s interview with Jamie DeMoe, September 12, 2012.
he struggled with learning disabilities: Author’s interviews with Gail DeMoe, July 2012, and Karla Hornstein, January 23, 2012.
“You’re the mistake!” they’d tell him: Author’s interview with Tyler DeMoe.
She remembered driving past her mother’s house: Author’s interview with Karla Hornstein, January 23, 2012.
Most people, including Jamie himself, described him as a classic worrywart: Author’s interview with Rikki Rice, July 2012.
EIGHT: A BLAMELESS AND UPRIGHT MAN
Gail’s warning stuck with Sharon: Author’s interview with Sharon DeMoe, December 3, 2012.
The truth was, small lapses were starting to add up to a more ominous picture: Author’s interview with Sharon DeMoe.
Sharon sat Sheryl, her younger daughter, down: Sheryl Grammer, “My Journey.”
in Bethesda Jerry underwent two weeks’ worth of tests: Inpatient medical record of Jerry A. DeMoe, December 1, 1995–December 15, 1995, National Institutes of Mental Health.
both obesity and cardiovascular disease have been associated with a greater risk for Alzheimer’s: “Be Heart Smart,” Alzheimer’s Association, accessed May 9, 2016.
researchers have been exploring the role of cholesterol: Luigi Puglielli, Rudolph E. Tanzi, and Dora M. Kovacs, “Alzheimer’s Disease: The Cholesterol Connection,” Nature Neuroscience, April 2003.
“In some ways, it was kind of a relief to him to know”: Author’s interview with Sharon DeMoe.
Sold under the brand name Cognex: Tacrine entry, Drugs.com, accessed March 3, 2014.
&nb
sp; In 1991, an FDA advisory committee rejected Cognex: Gina Kolata, “F.D.A. Advisers Reject a Drug for Alzheimer’s,” New York Times, March 16, 1991.
At least one panel member called it “a matter of conscience”: Thomas H. Maugh II, “Alzheimer’s Drug Backed for Approval,” Los Angeles Times, March 19, 1993.
Summers, who took a sabbatical to promote the drug’s approval to the FDA: Ibid.
But Jerry never saw the improvements: Sheryl Grammer, “My Journey.”
Soon after the diagnosis, Sharon made herself a vow: Author’s interview with Sharon DeMoe.
It was a scary transition for Sheryl: Author’s interview with Sheryl Grammer, January 24, 2012.
“a pretty and sweet season of my life, gone”: Sheryl Grammer, “My Journey.”
to his wife, he talked about suicide: Author’s interview with Sharon DeMoe, January 22, 2016.
“I mostly wanted help”: Author’s interview with Sharon DeMoe, December 3, 2012.
“We knew the pain”: Author’s interview with Sharon DeMoe, January 22, 2016.
Sheryl was consumed with shame: Sheryl Grammer, “My Journey.”
“I know how that goes”: Author’s interview with Sharon DeMoe, January 22, 2016.
Sharon called Sheryl to say: Come home: Sheryl Grammer, “My Journey.”
NINE: THE FRUITS OF PERSISTENCE
In the years that followed, time became the chief roadblock: Author’s interview with Eric Reiman, October 18, 2012.
The National Institutes of Health conducted its Alzheimer’s Disease Anti-inflammatory Prevention Trial: Breitner et al., “Extended Results of the Alzheimer’s Disease Anti-Inflammatory Prevention Trial,” Alzheimer’s & Dementia, July 2011; NIH press release, “Use of Non-Steroidal Anti-Inflammatory Drugs Suspended in Large Alzheimer’s Disease Prevention Trial,” December 20, 2004.
Since Alzheimer’s patients had plaques forming outside their brain cells: For an explanation of how plaques and tangles form, see “Alzheimer’s Disease: Unraveling the Mystery,” National Institute on Aging, September 2008 and updated January 22, 2015.
this was the challenge facing Chet Mathis: Author’s interviews with Chet Mathis and Bill Klunk, November 7, 2011, and January 27, 2012.
As its name suggests, it’s a bright red, toxic sodium salt: David P. Steensma, “ ‘Congo’ Red: Out of Africa?” Archives of Pathology, February 2001, pp. 250–252.
One day, however, a young psychiatry professor named Bill Klunk: Author’s interviews with Chet Mathis and Bill Klunk.
Kupfer had the faith to stand by him: Author’s interview with David Kupfer, July 17, 2013.
The difference between success and failure sometimes rests on a single atom: The Forgetting: A Portrait of Alzheimer’s, PBS, 2010, 66:22.
Mathis’s ideal dye couldn’t just leak into the brain in trace amounts: Author’s interviews with Chet Mathis and Bill Klunk.
Klunk and Mathis started with Thioflavin T: William E. Klunk and Chester A. Mathis, “Whatever Happened to Pittsburgh Compound-A?” Alzheimer Disease and Associated Disorders, July–September 2008, pp. 198–203.
“Whether it was blind luck or the fruits of persistence, no one can say”: Ibid.
Klunk and Mathis wrote a letter to that first, anonymous volunteer: Ibid.
PiB left the bloodstream, crossed into the brain, found plaques, and then worked its way into the center of the plaque: The Forgetting, 67:36.
The only thing that could hold them back now: Author’s interviews with Chet Mathis and Bill Klunk.
They never got it: Ibid.
The discovery of PiB “represented a major breakthrough”: Author’s interview with David Kupfer.
In 2008, for their discovery of PiB: “Klunk and Mathis Win Prestigious Potamkin Prize For Alzheimer’s Research,” Pitt Chronicle, April 27, 2008.
TEN: DÉJÀ VU
Bill Klunk, who talked about his discovery of Pittsburgh Compound B: The Forgetting, 35:30.
They were ten siblings: Tanzi and Parson, Decoding Darkness, pp. 48, 98 (see chap. 3, n. 5).
Ultimately, she died of pneumonia: Kate Preskenis, “Family History,” http://katepreskenis.com/family-history/.
One of her daughters, Julie Noonan Lawson, was interviewed: The Forgetting, 29:21.
“That’s when we realized: We’re not done”: The Forgetting, Ibid.
In February 2004, Gail received: Author’s interview with Karla DeMoe Hornstein, Aug. 17, 2011.
It was Alzheimer’s disease: Author’s interviews with Karla Hornstein, August 17, 2011, and April 5, 2013.
“I don’t think anybody thought it would turn into this”: Author’s interview with Jennifer DeMoe, July 2012.
“I thought, ‘Oh crap, both of them?’ ”: Author’s interview with Jessica McIntyre, August 15, 2012.
“I’ve been doing this for fifty years”: Author’s interview with Vic DeMoe, September 13, 2012.
Sunderland had arrived at the National Institute of Mental Health: David Willman, “$508,050 from Pfizer, but No ‘Outside Positions to Note,’ ” Los Angeles Times, December 22, 2004.
Additional biographical details on Sunderland: David Willman, “Review Faults Scientist’s Conduct,” Los Angeles Times, September 10, 2006.
Medicare will not pay for such scans: “Decision Memo for Beta Amyloid Positron Emission Tomography in Dementia and Neurodegenerative Disease,” Centers for Medicare & Medicaid Services, September 27, 2013.
ELEVEN: WHEN THE FOG ROLLS IN
She was just a tiny thing: Tanzi and Parson, Decoding Darkness, p. 84; Kosik and Clegg, The Alzheimer’s Solution, p. 29 (see chap. 3, n. 3).
There was a time: Tanzi and Parson, Decoding Darkness, pp. 20, 48.
The ten children Julia left behind were: Author’s interview with Julie Noonan Lawson, December 5, 2012.
When Kate Preskenis was in eighth grade: Author’s interview with Kate Preskenis, November 13, 2012.
Fran’s husband, a doctor, had attended a conference and returned with that suggestion: Author’s email exchange with Julie Noonan Lawson, May 10–11, 2016.
Her request was emphatic: Kate Preskenis, The Gene Guillotine: An Early-Onset Alzheimer’s Memoir, p. 15, http://katepreskenis.com/family-history/, accessed December 21, 2015.
Marilyn Albert: Author’s interview with Marilyn Albert, February 21, 2014.
their age of onset was dramatically different: Preskenis, The Gene Guillotine.
She eventually died of lung cancer: Author’s interview with Julie Noonan Lawson, December 5, 2012.
researchers later theorized the difference in their disease progression may have been epigenetic: Author’s email exchange with Ken Kosik, February 25, 2015; Andy Coghlan, “Hints of Epigenetic Role in Alzheimer’s Disease,” New Scientist, August 17, 2014; Mark J. Millan, “The Epigenetic Dimension of Alzheimer’s Disease: Causal, Consequence, or Curiosity?” Dialogues in Clinical Neuroscience, September 16, 2014, pp. 373–393.
“I felt like I knew her”: Author’s interview with Karla Hornstein, January 23, 2012.
When Fran was still alive and well enough to speak: Congressional testimony of Frances Powers, “Breakthroughs in Brain Research: A National Strategy to Save Billions in Health Care Costs,” hearing before the Senate Committee on Aging, US Senate, 104th Congress, June 27, 1995, serial no. 104–5, http://www.aging.senate.gov/imo/media/doc/publications/6271995.pdf.
TWELVE: MALDICIÓN
In pursuit of his enemy: Author’s interview with Francisco Lopera, April 18, 2013.
He had been experiencing his symptoms for four years: Michael Jacobs, “Yarumal, Colombia: the Largest Population of Alzheimer’s Sufferers,” Telegraph (UK), October 23, 2012.
La bobera, they called it: Pam Belluck, “A Perplexing Case Puts a Doctor on the Trail of ‘Madness,’ ” New York Times, June 1, 2010.
almost two-thirds of Americans with Alzheimer’s are women: “2015 Alzheimer’s Disease Facts and Figures,” Alzheimer’s Association.
On o
ne trip, while collecting blood samples in Angostura, Lucía was kidnapped by a drug cartel and held for eight days: Pam Belluck, “Alzheimer’s Stalks a Colombian Family,” New York Times, June 1, 2010.
During the years he studied them, he mapped out the family tree to extend to five thousand members, all descending from Javier San Pedro Gómez and María Luisa Chavarriaga Mejía: Belluck, “A Perplexing Case.” Also author’s interview with Francisco Lopera, April 18, 2013.
“I think the things that make people curious about the brain are all in literature”: Author’s interview with Ken Kosik, April 2, 2012.
“at a stage of life when very little prevents us from following our instincts and the allure of the unknown”: Kosik and Clegg, The Alzheimer’s Solution, p. 16 (see chap. 3, n. 3).
While Lopera conducted a basic neurological exam on a man in his late forties: Kosik and Clegg, The Alzheimer’s Solution, pp. 16–17.
Kosik was moved by this world: Kosik and Clegg, The Alzheimer’s Solution, p. 18.
Among Lopera’s patients was a middle-aged mother of fourteen children: Belluck, “A Perplexing Case”; also Kenneth S. Kosik, “The Fortune Teller,” Sciences, July/August 1999, p. 14.
the ravaged organs sat in round white plastic tubs: “The Remote Hope for Preventing Alzheimer’s,” Channel 4 News (UK), October 10, 2011, http://www.channel4.com/news/the-remote-hope-for-preventing-alzheimers.
But in Colombia, there were no genetic counselors: Kosik and Clegg, The Alzheimer’s Solution, p. 25.
The only answer came from a twenty-three-year-old man named Gonzalez: Kosik, “The Fortune Teller,” p. 16.
“We stand poised to be expelled from an Eden of genetic ignorance”: Kosik, “The Fortune Teller,” pp. 16–17.
homozygote: Author’s interview with Ken Kosik and Francisco Lopera, April 18, 2013; Kenneth Kosik et al., “Homozygosity of the Autosomal Dominant Alzheimer’s Disease Presnilin 1 E280A Mutation,” Neurology, November 24, 2014.
THIRTEEN: BURDEN OF PROOF
“If I do have it”: Author’s interview with Robin Tjosvold, May 2012.
“We clicked”: Author’s interview with Lori McIntyre, May 4, 2012.
She had been visiting a friend in downstate Wisconsin: Recollection of Leah Klobucher and Alayna Alexson during a visit to the University of Pittsburgh Medical Center, January 2, 2013.
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