Colorado Volunteer Spotlight: Dennis Fitzpatrick

Name:  Dennis Fitzpatrick

Volunteer role(s):  Data Entry

Years active with the Alzheimer’s Association:  16

Professional background:  Retired, telecommunications company

Dennis photo

Why I volunteer:  I am blessed to be retired and in excellent health.  I bicycle frequently for exercise and to enjoy the outdoors.  My wife and I enjoy travelling.  We especially enjoy spending time with our three young grandsons.  But bicycling, travelling, and spending time with family still leaves me with free time during the week.  In looking for productive use for my time, I found the Alzheimer’s Association where I very much support the work of the organization and where I think highly of the staff and other volunteers.

My favorite moment/experience as an Alzheimer’s volunteer:  I am struck by the artistic talent which the Memories in the Making program unlocks in the minds of people with dementia.

How what I do makes a difference:  The data entry work I do is needed to provide detailed information for a grant, which provides significant funding to the Alzheimer’s Association.

Wheat Ridge Police Division Chief Honored as First Alzheimer’s Hero

Amelia and Lorentz - HA pioneer in the training of Colorado police officers to respond with appropriate skill and understanding during contacts with persons with Alzheimer’s disease and other forms of dementia, Wheat Ridge Police Division Chief Jim Lorentz has been honored with the inaugural “Alzheimer’s Hero Award.”

A 37-year veteran of the Wheat Ridge police department, Lorentz has volunteered with the Colorado Chapter of the Alzheimer’s Association for more than 10 years. He has trained thousands of law enforcement personnel and other first responders to deal more effectively with challenging situations where the individual involved may not be able to react rationally to officers’ questions.

“As police officers, we are seeing more and more of these situations,” said Lorentz, who has provided training to 1,400 Denver Police officers as well as Douglas, Jefferson, Adams, Eagle and Arapahoe County sheriff’s officers and officers from the police departments in Wheat Ridge, Englewood, Lakewood, Avon, Eagle, Vail and Gypsum. “How do we deal with people with afflictions like Alzheimer’s? How do we prevent confrontations? Often, there are better and more effective ways to handle these situations.”

Lorentz also was a driving force behind the Colorado Life Track program, a wandering/safety device system designed for persons living with memory issues to help ensure their safety. The program is offered free of charge for Wheat Ridge residents.
“When I think of heroes and role models for our community, Jim Lorentz is the first person who comes to mind,” said Amelia Schafer, interim executive director of the Colorado Chapter of the Alzheimer’s Association. “We have been blessed to have Jim as a volunteer and partner for so many years. He brings passion, dedication and compassion to his volunteer work with us.”

“It is truly an honor to be recognized by the Alzheimer’s Association with the very first ‘Hero Award,’ said Lorentz. “I think people living with dementia, caregivers, family members, researchers and folks from the Alzheimer’s Association, as well as the cops on the street, are the real heroes. I am proud to be able to provide some tools to law enforcement so that they can help our communities adapt and overcome adversity to find solutions for positive outcomes.”

Alzheimer’s disease and other forms of dementia pose a growing challenge for police and other first responders, as well as healthcare workers and others who may encounter persons living with this disease in daily life.

“Bank tellers. Retail clerks. Coffee shop baristas. There are any number of people who may interact with a person with Alzheimer’s during a typical day,” said Schafer. “Sometimes those encounters can create confusion and fear. That makes Jim Lorentz’s work that much more important to help avoid potential problems.” There are 5.7 million people in the United States living with Alzheimer’s and other forms of dementia,
with 71,000 of them in Colorado.

Celebrating Mother’s Day when mom has Alzheimer’s

Linda Walker & Dottie - Helpline

On Sunday, May 13, 85 million mothers across the United States will be honored on their special day, Mother’s Day. But the day often takes on a different feel for the families of the 5.7 million people – nearly two-thirds of them women – living with Alzheimer’s disease.

“The reality is that this devastating form of dementia disproportionately affects women,” said Danelle Hubbard, director of Family Services for the Colorado Chapter of the Alzheimer’s Association. “Women, often mothers themselves, also account for approximately two-thirds of the more than 16 million volunteer caregivers who provide unpaid care for their loved ones living with Alzheimer’s and other forms of dementia.”

For Denver resident Linda Walker, understanding how her mother will react to situations is important to making the day successful.

“We don’t take my mom out to eat very much anymore,” Walker said. “She doesn’t remember what she likes and doesn’t enjoy it. On Mother’s Day, my husband and I will bring her flowers and a present and some muffins and spend about an hour and a half with her. I know that five minutes after we’re gone, she won’t remember that we were there, but I try to make the time together special.”

Understanding that the person living with Alzheimer’s likely won’t remember the occasion doesn’t mean that families shouldn’t enjoy a suitable celebration.

“I got married in October and I was so happy that my mother could be there,” Walker said. “She doesn’t remember being there, but I can show her pictures of us together. I’m creating memories for me.”

Tailor your own Mother’s Day celebration

How families choose to celebrate Mother’s Day when mom has the disease depends on the person living with Alzheimer’s and the family’s unique situation, but there are ways to tailor the celebration so that it is enjoyed by all, particularly for mom.

“It’s important to recognize that crowds, noise and new environments may cause agitation or anxiety for the person living with dementia,” said Hubbard. “It’s important to be sensitive to mom’s needs and aware of how they are responding to the festivities.”

The Alzheimer’s Association offers families the following tips for celebrating Mother’s Day when mom is living with Alzheimer’s disease:

  • Take a person-centered approach. Focus on what is enjoyable for the person with Alzheimer’s, such as looking at family pictures or enjoying the person’s favorite food. If they get overwhelmed in large groups, a small quiet gathering may be preferable.
  • Keep it simple. Consider a celebration over a lunch or brunch at home or where the person is most comfortable. Ask family or friends to bring dishes for a potluck meal or have food delivered by a local restaurant or grocery store.
  • Join in. If the person with Alzheimer’s lives in a care facility, consider joining in any facility-planned activities.
  • Don’t overdo it. Sticking to the person’s normal routine will help keep the day from becoming disruptive or confusing.Depending on the person’s stamina, plan time for breaks so the person can rest in a quiet area away from noise and crowds.
  • Adapt gift giving. Encourage safe and useful gifts for the person with Alzheimer’s. Diminishing capacity may make some gifts unusable or even dangerous to a person with dementia. If someone asks for gift ideas, suggest items the person with dementia needs or can easily enjoy. Ideas include: an identification bracelet, comfortable clothing, favorite foods and photo albums.
  • Educate yourself/find support. Learn more about Alzheimer’s in the Alzheimer’s and Dementia Caregiver Center at org/care. There you can also find more tips on supporting a family member with Alzheimer’s, join the ALZConnected online community, and find more information about Alzheimer’s Association Colorado Chapter services and programs. Or call the free 24/7 Alzheimer’s Association Helpline at 800-272-3900.

Alzheimer’s statistics: National

  • 7 million people in the U.S. are living with Alzheimer’s or another form of dementia
  • More than 16 million people in the U.S. provided 18.4 billion hours of unpaid care for loved ones in 2017
  • Alzheimer’s is the 6th-leading cause of death in the U.S.
  • Alzheimer’s is the only major disease without a prevention, treatment or cure
  • The total cost of caring for people living with Alzheimer’s will top $277 billion in 2018

Alzheimer’s statistics: Colorado

  • More than 71,000 Coloradans are living with Alzheimer’s or another form of dementia
  • Nearly a quarter of a million Coloradans are providing unpaid care for loved ones living with dementia
  • 1,612 Coloradans died from Alzheimer’s in 2015 (the last year measured)
  • Alzheimer’s deaths have increased 126% since 2000, while deaths from other major diseases have declined

Innovative Alzheimer’s Research Receives $1.1 million in Colorado Funding

Seven innovative Alzheimer’s disease research proposals from promising young researchers will now proceed thanks to $1.1 million in grants from the Alzheimer’s Association, Colorado Chapter.

The Early Career Investigator Grants research proposals are focused on three key areas of Alzheimer’s investigation:

  • Risk of developing the disease
  • Effective diagnosis
  • Therapies for treatment

“This is a very significant undertaking by the board of directors of the Colorado Chapter to commit more than $1 million to these very promising research projects,” said Heather M. Snyder, Ph.D., senior director of Medical and Scientific Operations for the Alzheimer’s Association. “Efforts like this support the Association’s commitment to research and help us extend funding to more qualified scientists and proposals.”

Snyder estimates that only one of every seven grant proposals submitted to the Association receives funding, so it is important that Alzheimer’s Association supporters – both individuals and corporate sponsors – step forward to help fund promising research opportunities.

The proposals approved by the board of the Colorado Chapter all come from Alzheimer’s researchers who are earlier in their careers and who are less likely to receive funding from the National Institutes of Health, which administers U.S. Government funding for research.

“We have a dual commitment,” said Donald Bechter, chair of the Colorado Chapter board. “While part of our focus is on providing information, programs and services to the 71,000 Coloradans living with Alzheimer’s, as well as their quarter of a million volunteer caregivers, we must continue searching for a cure to this horrible disease for the sake of future generations.”

Local donations funding international research

Bechter noted that the seven research grants – spanning four continents – are made possible through the generous donations of individual Coloradans as well as corporate sponsors. This is the Colorado Chapter’s largest financial commitment to research to date and among the largest single research commitments by any Alzheimer’s Association chapter, although Bechter noted there are plans to expand the initiative.

“We know there are other promising, innovative ideas that remain unfunded,” Bechter said. “Our goal is to fund as many of these exciting proposals as we can until a cure is found.”

The Alzheimer’s Association is the largest non-profit funder of Alzheimer’s research in the world, ranking behind only the governments of the United States and China in the total impact of research funding. Since 1982, the Alzheimer’s Association has funded more than 2,700 scientific investigations with $410 million. More than 400 of these research projects are currently active in 19 countries totaling more than $110 million.

Research details

Each of the Early Career Investigator Grants research projects funded by the Colorado Chapter of the Alzheimer’s Association are for between $150,000 and $175,000 over three years. The approved projects are:

  • “Characterization of Tau Astrogliopathy on Aging and Neurodegeneration” by Dr. Roberta Rodriguez of the University of Sao Paulo in Brazil. The project will focus on how age-related tau protein builds up, links with accumulation of a known immune cell (astrocyte) and increases an individual’s risk of cognitive decline.
  • “PET Imaging of Mitochondrial Dysfunction in Tauopathy” by Dr. Anna Barron of the Nanyang Technological University in Singapore. The project will examine a new tool to visualize early biological changes in Alzheimer’s disease.
  • “Noninvasive Biomarker of CSF Production” by Dr. Li Zhao of Beth Israel Deaconess Medical Center in Boston. The project will explore whether a noninvasive test can be used to investigate – or predict – if individuals with Alzheimer’s have lower CSF production than cognitively unimpaired individuals.
  • “Capillary Dysfunction in Alzheimer’s Disease: Pathophysiology and Treatment” by Dr. Eugenio Gutierrez Jimenez of University of Aarhus in Denmark. The project will attempt to determine if capillary dysfunction that results in low oxygen level in the brain is a characteristic of Alzheimer’s and, if so, can it be treated by an FDA-approved drug.
  • “Targeting Dopamine Neuronal Loss in a Model of Alzheimer’s Disease” by Dr. Marcello D’Amelio of the University of Rome. The project will test whether a cancer drug can block or slow down the degeneration of specific brain cell types.
  • “Drug Development of Pro-resolving ALZ/FPR2 Agonists for Alzheimer’s Disease” by Dr. Enza Lacivita of the University of Bari in Italy. The project will explore whether a new potential drug could resolve the associated inflammatory process and lead to increased clearance of beta-amyloid in persons with Alzheimer’s.
  • “Relationships Between Multiple Sensory Impairments and Cognitive Decline” by Dr. Willa Brenowitz at University of California/San Francisco. The project will examine the relationships between multiple sensory impairments and cognitive decline in older adults.

Alzheimer’s stigma a barrier to research & care

Stigma associated with Alzheimer’s disease is an obstacle for individuals seeking information about their risk of developing Alzheimer’s and wanting to participate in clinical studies, according to the results of a national survey about beliefs, attitudes and expectations most often associated with the disease.

Published in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, the study of 317 adults found over half of the respondents (55 percent) expect a person with mild cognitive impairment (MCI) or dementia due to Alzheimer’s to be discriminated against by employers and to be excluded from medical decision-making. Almost half expect the person’s health insurance would be limited due to data in the medical record (47 percent), a brain imaging result (46 percent) or genetic test result (45 percent).

Those numbers increased when survey participants were informed that the condition of a fictional person with Alzheimer’s would worsen over time – which is the case since Alzheimer’s is the only leading disease without a prevention, treatment or cure.

In addition, the study authors found that when told the fictional person’s prognosis would improve over time, 24 percent to 41 percent fewer respondents expected that the person would encounter discrimination or exclusion. This suggests to researchers that advances in therapies that improve the prognosis of Alzheimer’s likely would help reduce stigma.

“We found that concerns about discrimination and overly harsh judgments about the severity of symptoms were most prevalent,” said Shana Stites, Psy.D., from the Perelman School of Medicine, University of Pennsylvania. “By understanding what the biggest concerns are about the disease, we can help develop programs and policies to reduce the stigma about Alzheimer’s disease.”

The study participants were asked to react to a fictional description of a person with mild stage Alzheimer’s disease dementia. The study asked respondents to read a vignette and then complete the survey. Three different scenarios were presented: that the person’s condition would worsen, improve or remain unchanged.

The study findings suggest respondents continue to have concerns about documentation in the medical record or test results, despite the fact that there are some protections in place against gene-based health care insurance discrimination through the Genetic Information Nondiscrimination Act of 2008 (GINA).

“The unfortunate stigma associated with Alzheimer’s may prevent people from getting the diagnosis they need or the opportunity for early intervention that could improve their quality of life,” said Maria C. Carrillo, Ph.D., Chief Science Officer, Alzheimer’s Association. “We need to reduce the stigma to encourage persons with mild or even no symptoms of Alzheimer’s disease to enroll in prevention trials to find effective treatments.”

Dr. Carrillo stressed the importance of early diagnosis for people with Alzheimer’s disease and related dementias and their families to provide more time to plan for the future by participating in decisions about treatments, living options, financial and legal matters, as well as building a care team to making it easier to manage the disease.

The benefits of a diagnosis – and going public

DSC_0096For Colorado Springs resident Joanna Fix, the stigma of Alzheimer’s disease was not a factor in her decisions. In fact, public acknowledgement of her Alzheimer’s, starting with the official diagnosis, was a positive change in her life.

“When you don’t know what you’re dealing with, it’s like you’re sitting at a red light forever,” she said. “The worst thing that can happen (for a person living with Alzheimer’s) is not knowing. You have to keep going until you get an answer. Life is better when you know what you’re facing.”

Joanna’s diagnosis also helped address issues within her own family. Without an understanding of the underlying medical issues, family members questioned why the accomplished college professor and dean would miss appointments, forget information and lose enthusiasm for life.

“Various theories were put forth, ranging from depression to a brain tumor, a parasite or Multiple Sclerosis,” she said. The uncertainty played havoc with Joanna’s family relationships. Her diagnosis several years ago – after years of examinations starting at age 41 – has enabled the now-49-year-old to work with her husband, Forrest, and better plan their lives.

The benefits of going public

DSC_1733For Lafayette resident and business executive Rick Edmondson, the diagnosis came much quicker. At age 57, he was startled by what he saw as the first symptom of something serious – getting completely lost on his familiar drive home. Within mere months, Rick and his wife, Traci, received the dreaded news of his Alzheimer’s diagnosis.

It took several more months for the couple to come to terms with Rick’s diagnosis, but one day Rick had an epiphany.

“Traci,” he said, “this is our destiny.” And from that day forward, his approach to the disease and outlook on life changed.

Rick tackles every day as a challenge. After reaching out to share his diagnosis with all of their family and friends, including Rick’s international network through the time he spent with the Up With People performing group, the couple has become active volunteers for the Alzheimer’s Association. Together, they serve as resources for a class titled “Dementia Conversations,” and Rick has served as a resource for classes, events and programs for people with a diagnosis.

In addition, Rick and Traci formed a team for the 2017 Boulder Walk to End Alzheimer’s, and emerged as the leading fundraising team for the year in Boulder, True Grit, engaging 35 of their friends and family members to raise a Walk-leading $9,520, which they aim to top in 2018.

What to do after the diagnosis

For many people, like Joanna Fix and Rick Edmondson, receiving an Alzheimer’s diagnosis is not the last step – it’s the first. One important step is participating in research to find a treatment or cure. The Alzheimer’s Association is the world’s largest nonprofit funder of Alzheimer’s disease research. Currently, the Association is investing more than $110 million in nearly 400 best-of-field active projects in 19 countries.

A challenge of supporting that many research projects is finding enough willing participants – in part because of the stigma that comes with the disease. The Alzheimer’s Association TrialMatch® program is a free, easy-to-use clinical studies matching service that connects individuals with Alzheimer’s, caregivers, healthy volunteers and physicians with current studies. People fitting all of those descriptions are needed to participate in any of more than 260 promising clinical studies being conducted at more than 700 trial sites across the country.

The study

The Alzheimer’s stigma study was supported by grants from the Alzheimer’s Association, the Penn Neurodegenerative Disease Ethics and Policy Program and the Healthy Brain Research Center; and supported in part by a grant from the National Institute on Aging, and cooperative agreements from the Centers for Disease Control and Prevention, Prevention Research Centers Program.

University of Denver Researcher Receives Alzheimer’s Association Grant

Aurelie_Microscope_DU research grant.jpgA researcher from the University of Denver has been awarded a grant of $150,000 over three years from the Alzheimer’s Association for an investigation of whether changes in protein levels from an individual’s blood can be measured to predict the onset of Alzheimer’s disease.

Aurélie Ledreux, Ph.D., a research assistant professor at the Knoebel Institute for Healthy Aging at University of Denver, received the Alzheimer’s Association grant to examine disease-related changes in levels of Alzheimer’s disease (AD) specific biological markers, or “biomarkers.”

“If successful, this research could form the basis of a safe and inexpensive blood test for diagnosing Alzheimer’s at its earliest stages,” said Dr. Ledreux. “By detecting Alzheimer’s early using blood tests, we may be able to better treat people with the disease. And with early detection, when new therapies become available, we will be in a better position to know who needs treatment at the earliest point in time.”

According to Dr. Ledreux, two biomarkers (tau and amyloid-beta) can be detected in small vesicles called exosomes that are produced by most cells and can be found in blood. For examples, in the brain, neurons produce exosomes (termed neuron-derived exosomes) that contain proteins and lipids that capture their cell of origin health or disease status. Recent studies have demonstrated that it is possible to isolate these neuron-derived exosomes from blood, and measure how much amyloid-beta and tau they contain.

“This has been found to correlate well with the degree of cognitive decline in AD, and thus would make the neuron-derived exosomes a good biomarker for AD,” she said. “However, we don’t know if these exosomes isolated from blood reflect what truly goes on in the brain. My research will determine if changes in the brains of patients with dementia are reflected in parallel changes in exosomes isolated from their blood.”

The Alzheimer’s Association is the largest non-profit funder of Alzheimer’s research in the world, ranking behind only the governments of the United States and China in the total impact of research funding. Since 1982, the Alzheimer’s Association has funded more than 2,700 scientific investigations with $410 million. More than 400 of these research projects are currently active in 19 countries totaling more than $110 million.

“There are three primary categories of Alzheimer’s research: assessing people’s risk of developing the disease, effective methods of diagnosis, and treatment of persons living with the disease,” said Amelia Schafer, acting executive director of the Colorado Chapter of the Alzheimer’s Association.

“Finding an effective, minimally invasive means of diagnosing the disease early in its progression would be invaluable for helping individuals with the diagnosis, as well as their caregivers, take full advantage of therapies and resources that can improve and maximize their quality of life,” said Schafer.

I’m Glad I Was Diagnosed with Alzheimer’s – A First-Person Account

DSC_0096At age 41, Joanna Brooks Fix was a rising academic star. She earned three college degrees. She was the chair of criminal justice and management at a major university…a specialist in organizational psychology who consulted with America’s Most Wanted.

Flash forward eight years. Who could have imagined that at age 49, Joanna would have been out of work for six years? She can no longer drive. The task of loading her dishwasher leaves her totally flummoxed. And she recently put her life in danger by going outside in the middle of the night in a blizzard to check the mail.

Least of all, who could have predicted that Joanna would acknowledge that she is living with Alzheimer’s disease, and is happier than she’s been in years? That last statement requires some explanation, which Joanna will gladly provide.

To understand Joanna’s state of mind today, let’s go back a few years. The daughter of a Marine, Joanna was raised to tough it out…to go to work unless you weren’t physically able. Even though there was a history of Alzheimer’s disease on her mother’s side of the family, it didn’t cross her mind.

The first signs

In 2010, she was living a hectic lifestyle. She even walked away from a serious automobile accident in which the other driver – who rear-ended Joanna’s car – died at the scene. But within a year, the first cracks in the façade of her memory began to appear. The accomplished multi-tasker was exhausted. She’d fall asleep in her work clothes. She began to worry that her students weren’t getting value from her.

Her first visit to a neurologist came at age 43. An MRI showed extreme atrophy in her brain. While there was mention of Alzheimer’s in her medical records, doctors didn’t deliver a diagnosis. Various theories were put forth, ranging from depression to a brain tumor, a parasite or Multiple Sclerosis. Her own family members began to question why she couldn’t – or wouldn’t – keep living her dream life.

“I went years without a diagnosis,” Joanna said. The uncertainty played havoc with family relationships. Still, Joanna pressed on until, after about four years of consultations with doctors, she finally received an Alzheimer’s diagnosis.

“The worst thing is not knowing”

While no one, least of all Joanna, will ever celebrate the onset of Alzheimer’s disease, she did acknowledge that she feels more hopeful now than at any time since her diagnosis.

“When you don’t know what you’re dealing with, it’s like you’re sitting at a red light forever,” she said. “The worst thing that can happen (for a person living with Alzheimer’s) is not knowing. You have to keep going until you get an answer. Life is better when you know what you’re facing.”

The difference now is that Joanna and her husband, Forrest, can plan their lives. He has retired from his chiropractic practice to care for her, and having him present has given her great consistency and comfort.

“His touch calms my brain,” she said. “Nothing else can do that.”

Joanna is quick to dispel the notion that Alzheimer’s is easy to deal with. In addition to the decline of her memory, she has seen her senses of taste and smell diminish, and she wrestles with insomnia. Each creates its own challenges.

“Who doesn’t want to taste their food?” she said. “There’s some depression with losing that. I started spicing my food so much to taste it that I got an ulcer.”

Her insomnia also led her to take an ill-advised, middle-of-the-night trip to the mailbox in front of her house in the midst of a blizzard. Joanna reached the mailbox – a mere 30 feet from the house, but as she turned around, all the houses looked the same. With her husband sound asleep in the house, Joanna panicked. Luckily, she recognized her name on the mail, and was able to match the address to the number on the house, averting a tragedy.

What does the future hold?

The future holds many questions for Joanna and Forrest, but they have found an outlet for their passion of educating people about the disease through the Alzheimer’s Association of Colorado.

“You don’t need to wait to reach out to the Alzheimer’s Association to talk with an expert,” Joanna said. “They have supports in place. They are here to help you.”

Joanna also acknowledges that devoting her energy to the Alzheimer’s cause is a way of paying forward.

“I’m doing this for you, not for us,” she said. “I’ve already got Alzheimer’s. I’m only 49, so people need to understand it could happen to anyone. You don’t get it (Alzheimer’s) because you are a smoker. You don’t get it because you drink too much. You don’t get it because you do or don’t go to church. And you don’t get it just because you’re old…”

Reflecting Joanna’s focus on the importance of an early diagnosis and getting support, the Alzheimer’s Association has several programs that are geared toward helping persons who suspect they may be living with memory loss.

The first is a program for the medical community: Rapid Referral, which directs an individual diagnosed with dementia – or their caregiver – to the Alzheimer’s Association for the full range of services provided at no charge to families. These individuals can also contact the Association directly through its free 24/7 bilingual Helpline at 800-272-3900.

“There is research that shows if people with dementia can be identified earlier in their diagnosis, it can have enormous implications for the individual and their caregivers in terms of quality of life,” said Amelia Schafer, interim executive director of the Alzheimer’s Association of Colorado. “In addition, studies show that it can save up to 15 percent of the eventual cost of care.”

The second program is TrialMatch, a free matching service to connect individuals with Alzheimer’s, caregivers, healthy volunteers and physicians with current Alzheimer’s studies. The continuously updated database contains information on more than 260 promising clinical studies being conducted at more than 700 trial sites across the country.

“I don’t know how anyone can get along with this disease without the help of the Alzheimer’s Association,” Joanna said. “We attended support groups with another couple, which is helpful to understand that other people are going through this too and having a similar experience. The Association gave us so much stability, education and support.”

In the meantime, Joanna and Forrest press ahead with their lives.

“This disease is not my identity,” she said. “There are days I forget that I have Alzheimer’s. I have a whole other life, even if it is different from other people my age.”

Alzheimer’s: The Last Chapter

Twenty years ago, investment manager Gary Premer and his mother began collaborating on her memoir – telling some hard stories about her life growing up in a dysfunctional family in Northern Colorado and Southeastern Nebraska. What he didn’t know at the time is that, for so many people, including his mother and two of his siblings, Alzheimer’s disease is the last chapter of the book.

Gary’s mother, Maxine, grew up in the Depression era when money was scarce and too much of it went to support her father’s craving for alcohol. To say ‘life was hard,’ is a cliché, but it fits. Maxine never realized her dream of finishing high school and becoming a telephone operator. Her mother now divorced, Maxine was moved out of her home by her grandfather and forced to be a live-in caretaker for another family. Other parts of the story she blocked out in order to move on.

“Mom was very reluctant to talk about her life,” he said. “She suppressed a lot of it, and I was always curious, particularly about her dad. She had few remembrances of her dad. One was a large oval portrait of him that resided on a wall in an unfinished part of her basement.”

Gary decided that it would be informative for his family and therapeutic for his mother to talk about her early life so, in 1998, he bought her a gift: a booklet on “Writing Your Life” by Mary Borg that is based on her class at Aims Community College. As part of the gift, Gary said he would sit with his 77-year-old mother and write down her memories, turning them into a book about the family’s life in Depression-era Colorado and Nebraska. Maxine reluctantly agreed.

Gary’s goal of finishing the book by his mother’s 80th birthday was not realized. Then, at age 81, she was diagnosed with Alzheimer’s, followed a month later by a stroke. Two years later, Maxine passed away.

The book took a back seat as other events drew Gary’s attention. At age 57, his brother, Doug, a health professional, was diagnosed with early-onset Alzheimer’s. Just 18 months earlier, Doug and his wife had moved to Montrose, Colo., to enjoy their early retirement years traveling.

“The toughest part of Alzheimer’s is receiving the diagnosis when you’re aware of the implications,” said Gary. “Doug had spent his career in vocational rehabilitation, and he knew what the diagnosis would mean – particularly after seeing our mother go through it.”

More recently, Gary’s older sister, Darla, was diagnosed at age 78. Unlike Doug, who fought valiantly and cried many tears over the news, Gary sees more resignation in Darla.

Gary Premer - preferredWhat about me?

Twenty years after Gary first sat down with his mother to pen her biography, his book, “Time Would Tell,” is finished. But he understands that his last chapter, like Darla, Doug and their mother before, may be written by Alzheimer’s.

“I have been tested, and I do have the DNA markers for the disease,” he said. “It doesn’t mean that I’ll get it. You can’t live in fear of getting Alzheimer’s.”

“The more I learned, the more proud of my mother I became,” said Gary as he learned of the challenges his mother faced and the sacrifices she made. He hopes to emulate her resilience as he ages, understanding that his family’s Alzheimer’s legacy may write his last chapter.

“I think about what I want to do in what could well be my last 10 years,” he said. “I consider the time I have to be a gift, and I have a responsibility to give back.”

Gary is giving back by talking to groups about Alzheimer’s disease, and donating proceeds from his book to the Alzheimer’s Association of Colorado.

“I want to be relevant to the movement to solve the Alzheimer’s challenge,” he said. “While I’m skeptical that a cure will be found in my lifetime, I’ve seen firsthand the drain that this disease is on families emotionally, logistically and financially. And I understand the cost to our nation in terms of healthcare costs. We need to figure this out on so many levels.”

“Time Would Tell” is available directly from Premer at garypremer@comcast.net, the publisher at Lulu.com/spotlight/TWT2018, or from the Alzheimer’s Association of Colorado by contacting Ashley Flores at asflores@alz.org.

To learn more about Alzheimer’s research and to participate in a clinical trial, call the Association’s free 24-hour Helpline at 800-272-3900 and ask about the TrialMatch program.

Hispanic Legislator/Activist Polly Baca Puts Focus on Alzheimer’s

As a child growing up in Northern Colorado, Polly Baca was motivated by the discrimination she experienced as a Coloradan of Mexican descent and used it to fuel her career in politics. It inspired her to become the first minority woman elected to the Colorado Senate, the first Hispanic woman to serve in leadership in any state senate, and the first Latina to co-chair a Democratic National Convention. She also served in the White House under Presidents Lyndon Johnson and Bill Clinton.

polly-baca-fb-photo.jpg

Today, Baca is working to overcome another inequity: the higher risk that Hispanics face from the only leading disease for which there is no prevention, treatment or cure: Alzheimer’s.

Baca watched her own mother’s health decline after she was diagnosed with Alzheimer’s. She observed how the disease affected her mother’s behavior, and required around-the-clock care. Sharing that experience with her daughter, Monica, who provided live-in care for her grandmother and Polly’s mother, has helped fuel Baca’s commitment to Alzheimer’s research and care.

Baca and her family members face the reality that Hispanics are 50 percent more likely than whites to develop Alzheimer’s. Higher rates of cardiovascular disease combined with diabetes, high blood pressure and cholesterol create greater risk for Alzheimer’s and stroke-related dementia. When combined with longer projected lifespans for Hispanics, the risk for dementia is significant.

“I realize that as a woman and a Hispanic, I face a greater risk of Alzheimer’s than the average person,” said Baca, reflecting on statistics showing that nearly two-thirds of people diagnosed with dementia in the United States are women. “My daughter and my sisters and many other Hispanic women share these risk factors.”

For those reasons, Baca is doing more than merely working to raise awareness of the disease. She has volunteered to participate in Alzheimer’s research.

“With my family history, that is one proactive step I can take,” she said.

The Alzheimer’s Association is conducting clinical trials at hundreds of locations around the country, involving people with the Alzheimer’s diagnosis, caregivers and healthy volunteers through the free TrialMatch program.

To learn more about Alzheimer’s research, go to www.alz.org or call the Alzheimer’s Association free 24/7 Helpline at 800-272-3900

True Grit: Colorado Couple Won’t Give an Inch to Alzheimer’s (It’s Only Yellow Jell-O)

Newly minted grandparents, Rick and Traci Edmondson of Lafayette, Colo., were looking at retirement on the distant horizon and planning a long-awaited trip to Paris. After 36 years of marriage, they were anticipating many great years and experiences ahead.

Then,DSC_1733 Rick got lost. Driving home from work on a route he knew by heart, he got disoriented. He called his son for directions and got home safely, but he knew something was wrong.

“In the moment it was happening, I was scared to death,” said Rick of the experience. “It was terrifying.”

At age 57, Rick had enjoyed a long, successful career split between landscape architecture and airline management. That soon changed as the couple met with a series of doctors to get to the root of Rick’s memory loss.

“Rick was in a very high stress job,” said Traci. “I figured that was part of it.”

The news no one wants to receive

Three days before Christmas of 2016, they met with Rick’s neurologist. “You have Alzheimer’s,*” he said.

“Hearing the diagnosis is like a bomb going off,” said Traci. “It fragments every aspect of your life.”

The following months were spent in grief and disbelief. Rick’s grandmother had passed away with Alzheimer’s, and he lived in fear of the disease.

“I didn’t know what was coming at me,” he said.

A new approach

Then, one day, Rick had an epiphany.

“Traci,” he said, “this is our destiny.” And from that day forward, his approach to the disease and outlook on life changed.

Since that day, the couple has aggressively addressed his diagnosis – with one qualifier: Rick hates the disease so much that he won’t call Alzheimer’s by name. Instead, he refers to it as Yellow Jell-O, a label shared with a traditional family dessert recipe made with the namesake gelatin, green onions, green olives, cheese and mayonnaise. Rick doesn’t like it either.

Together, Rick and Traci have made significant changes in diet, exercise and sleep. And they have participated in a wide variety of educational and informational programs through the Alzheimer’s Association of Colorado’s Boulder Regional Office.

“It is so paralyzing to get a diagnosis like this,” said Traci. “You need help to get out of that grief cycle. The Alzheimer’s Association gives you the tools to get back on your feet. It has changed the course of our journey.”

Not only have Rick and Traci been avid program participants, they are active volunteers for the Alzheimer’s Association. Together, they serve as resources for a class titled “Dementia Conversations,” and Rick has served as a resource for classes, events and programs for people with a diagnosis.

“Rick and Traci’s firsthand experience enables them to connect with others in a compassionate and meaningful way,” said Ralph Patrick, regional director for the Alzheimer’s Association office in the Greater Boulder Region. “For me, they’re not just people who’ve been clients, but they’re people with whom I’ve formed a close connection and friendship to further the cause of helping people with dementia.”

Leading fundraisers

In addition, Rick and Traci formed a team for the 2017 Boulder Walk to End Alzheimer’s, and emerged as the leading fundraising team for the year in Boulder, engaging 35 of their friends and family members to raise a Walk-leading $9,520, which they aim to top in 2018.

“Many people don’t realize that the Alzheimer’s Association doesn’t just provide free services to families like ours, but it is a leading funder of research to find a cure,” said Traci. “That’s an important motivator for us.”

In fact, the Alzheimer’s Association is the world’s largest nonprofit funder of Alzheimer’s disease research. Since 1982, the Alzheimer’s Association has invested more than $410 million in nearly 2,700 scientific investigations. Currently, the Association is investing over $110 million in nearly 400 best-of-field active projects in 19 countries.

That role of helping find a cure has provided Rick with some added incentive to get involved.

“The Walk (to End Alzheimer’s) gave me purpose,” said Rick. “It gave me a reason to get going in the morning.”

It also reengaged him with an extensive, international network of friends. In his youth, Rick was part of the Up with People, an international touring group that blends music and social action. He has reached out to all of his friends from that program, along with coworkers from his years of living in Washington, D.C., to inform them of his diagnosis and involve the local ones in his Walk team, dubbed True Grit by Rick.

The origins of True Grit

Rick’s sister, Shane, helped get the team organized and committed to being there even though it overlapped with her 50th birthday. When she asked her brother what they should call the team, he replied “True Grit,” giving it a name that came with multiple meanings.

When Rick was a lad of 10, the blockbuster Western movie “True Grit” starring John Wayne was filmed near where Rick’s family lived in western Colorado. He was tapped to help groom the movie star’s horse each day.

The other meaning relates to Rick’s approach to Alzheimer’s.

“We’re going to get through it – no matter what,” he says without ounce of doubt. “It means you are going to finish your job.”

Advice to those who follow

Having lived through the bomb blast of the diagnosis more than a year ago, Rick and Traci are now able to reflect on the changes that Alzheimer’s disease has brought to their lives and offer thoughts to other families facing the same challenge.

“Patience,” said Rick. “You need to be patient with yourself, and with others who are finding out about your diagnosis.”

Traci offered a similarly thoughtful approach.

“If there is a blessing to this, it’s that you receive notice so you can make the most of your time,” she said. “You realize that moments are precious. When you first receive the diagnosis, you worry about whether you have three months or six months or a year. The reality is that you have time to make new magic moments.”

With that philosophy in mind, Rick knows his job is to get the better of Yellow Jell-O. His goal is to survive…to enjoy his grandchildren and take that trip to Paris. And to make True Grit one of the biggest Walk teams in the country. (Click here to join or support True Grit.)

And Traci is standing side-by-side with him.

“We want to make the best of what we’ve got,” said Traci. “Whatever we have is a gift.”

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(*Rick was ultimately diagnosed with posterior cortical atrophy, a form of dementia usually considered an atypical variant of Alzheimer’s disease)