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.

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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.”

#  #  #

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

Physician Takes His Alzheimer’s Message to the Streets

byron-conner.jpgDr. Byron Conner recently retired after more than a quarter of a century as an internist with Kaiser Permanente, but relaxing isn’t high on his agenda. Now he’s a full-time volunteer, taking his message of the connection between brain health and a healthy lifestyle to churches, barber shops, salons and community forums through the Denver area.

While Dr. Conner has spoken to a wide range of audiences on behalf of the Alzheimer’s Association of Colorado, his passion is focused on the African-American community where the risk for Alzheimer’s disease is highest – and he finds far too many people who choose to ignore the warning signs.

“We know that vascular disease – diabetes and hypertension – are much more common in minority populations (African-Americans and Hispanics), and vascular dementia and diabetes are linked with Alzheimer’s,” said Dr. Conner. “I see too many young people with hypertension…not only more prevalent, but starting at a younger age, including people in their 30s with uncontrolled hypertension and diabetes.”

The predisposition to vascular disease is among the factors that contribute to African-Americans being twice as likely as whites to be diagnosed with Alzheimer’s or other forms of dementia, and Hispanics are 50 percent more likely than whites.

Despite that elevated risk, Dr. Conner is frustrated that many people he encounters remain in denial.

“Some people who I meet in our sessions in the community (through the Colorado Black Health Collaborative) say they don’t want to know about high blood pressure,” he said. “Obesity is skyrocketing. Our whole population is more sedentary, and that’s a problem.”

While there isn’t a cure, treatment or prevention for Alzheimer’s, Dr. Conner stresses that the key to lowering the risk of dementia is living a healthy life, particularly as we age.

“I have seen elderly people who have almost no diseases at all,” he said. “To a person, they go out to walk daily, they don’t smoke. And I’ve seen the opposite – people who have major health issues in their 40s and 50s. There is the lure of unhealthy fast foods. The best way to eat a healthy diet is to not eat anything advertised on TV.”

Exercise is the other missing piece. Dr. Conner notes that we are fortunate to live in Colorado, where the climate allows for being active outdoors virtually year-around.

“You don’t have to be into sports, but you need to run or walk or do anything,” he said. “There is a strong correlation to and a strong payoff from living a healthy lifestyle.”

To learn more about Alzheimer’s Association guidance on the impact of a healthy lifestyle – and the “10 Ways to Love Your Brain” tipsheet – go to www.alz.org/co or call the Association’s free 24/7 Helpline at 800-272-3900.

Monica Londoño has found her purpose: Helping people

Volunteer Profile

LMonica Lodono - preferred pixife wasn’t supposed to turn out this way for Monica Londoño. She was living happily in her native Colombia when, at age 21, she met a man from the United States who married her and whisked her away to live in Loveland, Colorado.

That marriage lasted only six years before divorce. Then, tragically, their daughter later passed away at age 7. Suddenly, Monica found herself alone, 3,000 miles from her home, feeling an absence of purpose in her life.

“I had to reevaluate my life and move forward,” said Monica. “I think about how painful it was and how hard it was to wake up in the morning.”

Monica found her purpose and her motivation through giving, and people living with Alzheimer’s disease have been among the primary recipients of her generosity.

“Just giving…just helping…has giving me purpose,” she said. “I would say that we don’t have to think we need to change the world, but we can change the life of one person at a time. I feel that I have been able to make an impact on those people I’ve been able to help. There’s so much need in this world, but I know the person I am helping appreciates it.”

The super volunteer

To say that Monica volunteers her time is an understatement. Somehow, she finds “free time” where others might not. Her days already are full as owner and operator of a franchise of the SENIORS Helping SENIORS business that provides in-home care services. Despite the fact that she has not experienced Alzheimer’s or dementia through her own family, Monica has adopted the cause with a passion.

Monica began her engagement with the Association through the Greeley regional office, volunteering on the Walk to End Alzheimer’s.  Seeing the benefits of her labors, she sought out additional Alzheimer’s training from Regional Director Kelly Ostoff.

“Monica is a priceless volunteer for our organization’s work and has the biggest heart for the people we serve,” said Ostoff. “Despite how busy I know she truly is, she always says yes to lending a hand and her time to our cause.”

From student to teacher

Before long, Monica was certified to teach classes herself…The Basics of Dementia…The 10 Warning Signs…Leaders in Dementia Care… And, being fluently bilingual, she has taught them in both English and Spanish.

​“Monica is an invaluable resource serving Spanish-speaking families living with Alzheimer’s disease,” said Marissa Volpe, Diversity and Inclusion coordinator for the Colorado Chapter. “Monica is able to connect immediately with constituents and her Spanish fluency allows her to gain trust, offer critical insights and resources, and bridge communities to the Alzheimer’s Association. She has taught classes on Alzheimer’s disease in Spanish, led a Spanish-speaking caregiver support group, conducted outreach within the Latino community and most recently helped with a Telemundo phone bank. She is, as we say in Spanish, imprescindible — essential!”

Later, Monica heard of a need at the Association’s new Boulder County regional office, so she contacted Regional Director Ralph Patrick and offered her services both on the Walk to End Alzheimer’s and in delivering services.

“Monica is always willing to provide whatever help is needed,” said Ralph Patrick. “She has a very ‘can do’ attitude and is extremely committed to the cause.”

As if that’s not enough, she served a year as a volunteer legislative advocate to U.S. Rep. Ken Buck of Colorado, sharing with him the importance of Alzheimer’s-related issues.

“Monica is an ardent advocate for the Latino population and readily contributed her input regarding their special needs,” said Cheryl Parrish, former vice president of Programs for the Colorado Chapter, who worked with Monica on her advocacy efforts.  “She is an inspiration and I was enriched by my time working with her in my ambassador role, and interacting at Alzheimer’s Association Walks and other events.  She is an ardent advocate on behalf of seniors who struggle with Alzheimer’s and other health challenges.  An added bonus is her contagious enthusiasm as a new American citizen.  The Alzheimer’s Association is lucky to have her in the volunteer ranks.”

While the Alzheimer’s Association is blessed to have Monica as one of its “super volunteers,” we share her with other worthy causes. She leads an annual medical mission team to Nicaragua where they rent and run a hospital to perform free surgical procedures for about 10 days. And then there’s the Longmont Meals on Wheels program, the Greeley Philharmonic Guild, the Greeley Chamber of Commerce…

Monica’s mentors

“The reason I help so much is because I grew up with three amazing women…my grandmother, my mother and my aunt,” said Monica. “My grandmother and mother were business owners, and my aunt is an incredible woman. I’ve learned that the best way to help community is to give more than you receive.”

Through her business, Monica sees the impact that Alzheimer’s disease has on caregivers. It helps motivate her to engage even more as a volunteer, just as her own company gets busier by the day as the aging population requires more and more help.

“I love all the training I’ve taken with the Alzheimer’s Association,” she said. “I can use everything I’ve learned in my personal life, business…everywhere. Through my business, I’ve been able to see the struggles family members go through when one is affected by this disease. I feel compassion for the 24/7 caregiver because it not only affects you mentally, but physically. Plus, it’s a very expensive disease.”

And, seeing the impact the disease has on both the individual as well as caregivers, she has a wariness of Alzheimer’s.

“With Alzheimer’s…I’m afraid of that one,” she said. “I look at my boyfriend and imagine him not remembering me someday. It’s so emotional.”

That fear drives Monica – as it does nearly 1,000 other Colorado volunteers – to support the Association as it raises funds to find a cure for the disease. Until that time, she has no plans to slow down her pace.

“I will just help and help until I can’t get out of bed anymore,” she said, “or until people stop asking.”

Denver Broncos Continue to Show Support

broncos-banner.jpgThe Denver Broncos – team and family – continue to show their support for the Alzheimer’s Association of Colorado as we raise funds to support the mission of eliminating Alzheimer’s disease through research, providing care and support and promoting brain health.

Team Super Bowlen – the family and friends of team owner Pat Bowlen – currently stands as the No. 1 fundraising team for the Denver Walk to End Alzheimer’s, having exceeded its $100,000 goal. “This one’s for Pat!!” is the slogan for the super fundraisers.

Beyond the Bowlen family, the Denver Broncos team, a community partner of the Colorado Chapter, has been a consistent supporter of the Association. The team is continuing that support by displaying a banner on the side of Sports Authority Field at Mile High Stadium through the end of the year.

“The Denver Broncos and the Bowlen family have been amazing partners for the Alzheimer’s Association of Colorado,” said Gene Sobczak, executive director of the Colorado Chapter. “We greatly appreciate their support, which has grown over the years and helps raise the profile of the Alzheimer’s Association throughout the state.”

The Walk to End Alzheimer’s is the principal fundraiser for the Colorado Chapter, and it supports the Association’s ability to provide programs and services at no charge to Colorado families. The Colorado Chapter’s collective 2017 target for its 11 Walks to End Alzheimer’s is $2.3 million, and it will continue working to meet that goal through Dec. 31. To make a donation to the Alzheimer’s Association of Colorado in the name of Denver Broncos’ owner Pat Bowlen and Team Super Bowlen, click here.

 

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The Surprise Christmas Letter

DSC_0100For the first 41 years of their marriage, Harold and Barb Arnold didn’t send out a Christmas letter to friends and family. Not about vacations. Not about the births or graduations of their six children, 11 grandchildren or six great-grandchildren.

It wasn’t until the holiday season of 2016 that something happened to change their lives that they felt required a special message. So when their friends and family members opened the Arnolds’ holiday card in 2016, they were in for a surprise. Not only was there a holiday letter enclosed, but the couple shared the news that Barb was recently diagnosed with Alzheimer’s disease.

With his wife’s permission, Harold penned the letter in her voice, introducing “the new Barb,” and describing a few of the ways the disease was affecting her. It concluded with their honest assessment: “(We) continue to have fun and enjoy life every day. We still value you as our friend.”

The candid letter elicited the kind of warm response you would hope for, with the vast majority of recipients calling to express their support and offer to help.

Families facing an Alzheimer’s diagnosis, like the Arnolds, struggle with how to tell their friends and family the news. The couple believes that many of their inner circle suspected the diagnosis might be coming. The toughest was telling some of the most distant relatives who haven’t been around frequently enough to observe the subtle changes in Barb’s memory.

While some family members may be a bit in denial, one of the reactions the letter generated was welcome visits and promises of visits from children, grandchildren and great-grandchildren.

The solution creates another problem

Ironically, for the Arnolds the toughest part of the process of publicly acknowledging Barb’s diagnosis was what to do with the outpouring of genuine care and support.

“We did the first step right (sending the Christmas letter), but we didn’t know what to do with all the offers to help,” said Harold.

“We’re not used to receiving help,” Barb added, noting that they are more likely to offer support to others than seek it in return.

Channeling good intentions

The challenge for both the recipient of sincere offers of help and those delivering them is how to make them meaningful. Barb notes that she responds to the anticipated question of “How are you feeling” with her standard response: “I feel fine,” emphatically adding: “And I am!”

But the couple doesn’t want to dismiss those offers of support because they realize that there may be a time when they will be needed more.

So this year, the couple is going to revisit Barb’s Alzheimer’s diagnosis in their second annual Christmas letter, this time offering some specific examples of what people can do, starting with the idea that friends and family can contribute photos and memories that they have with and of the Arnolds back to them for inclusion in a new scrapbook.

They also will share some of the tips from the Alzheimer’s Association of Colorado on what well-intentioned loved ones can do to help those with a diagnosis. Some of those tips include:

  • Educate yourself about Alzheimer’s disease.
  • Stay in touch.
  • Be patient.
  • Offer a shoulder to lean on.
  • Offer to help the family with its to-do list.
  • Volunteer with the Alzheimer’s Association.

The tipsheet also offers a few ideas on understanding the diagnosis from the perspective of the person with it, including:

  • “I’m still the same person I was before my diagnosis.”
  • “My independence is important to me. Ask me what I’m still comfortable doing and what I may need help with.”
  • “I can still engage in meaningful conversation. Talk directly to me if you want to know how I am.”
  • “Don’t pull away. It’s OK if you don’t know what to do or say. Your friendship and support are important to me.”

Barb offered a simple example that hit right at the heart of the issue. Since her diagnosis, she has given up driving, so when Harold is busy and she wants to get around town, she’s stranded.

“So if I want to buy him a surprise present, I have to ask him for the money, and then ask him to take me to the store,” she laughed.

Everyone’s adjusting

An Alzheimer’s diagnosis changes everything, but the Arnolds are adapting. Harold is learning how to cook, with mixed results. And he’s trying to pick up more of the household chores that Barb routinely handled.

The other big adjustment is that the couple is planning their inaugural venture into social media. They intend to enlist one of their grandchildren to set up a Facebook page for them so they can share the photos and memories their friends and family contribute, and to stay in closer contact with their distant relatives.

How to help those with an Alzheimer’s diagnosis

To learn more about how you can support loved ones with an Alzheimer’s or dementia diagnosis, call the Alzheimer’s Association’s confidential and free Helpline at 800-272-3900. It is staffed by trained professional counselors who can offer counsel and direction to local programs and classes, all at no charge, as well as resources for legal and lifestyle planning. You can also visit us online at alz.org/co.

About Larry Schwartz

By Cherie Karo Schwartz, his loving wife

My husband, Larry Schwartz, was just Larry to most everyone who knew him, yet he was really Dr. Lawrence Schwartz: MIT- and UCLA-educated aerospace engineer, chief scientist and Top Fellow at Hughes and Raytheon for 43 years.

Larry’s salient attribute, beyond his genius and magnificent mind, was his gentle sense of humor filled with puns. Blessed with a kind heart, Larry had always been a quiet man until the onset of Alzheimer’s disease in 2006 gave him the gift of gab. He loved finding out about others’ lives, and he had seven strong personal stories of survival and strength that he loved regaling anyone and everyone with, usually in a running dialogue.

One of Larry’s loves was supporting the arts in all forms: liberal, Jewish and educational causes, and organizations for social justice. Always creative, he designed my wedding dress per our shared vision of it, my engagement ring, our wedding invitation, and our entire home. He even made some of the furnishings.

Larry also was an outstanding artist who, after his Alzheimer’s diagnosis, contributed several drawings to the Alzheimer’s Association Memories in the Making (MIM) arts gala, which he attended for several years, helping to raise funds for the Association. He watched with pride as two families got into a bidding war for one of his standalone pieces, “Pigasus,” in the silent auction. He offered commentary and got to talk with the winners. He was flying with joy.

Larry derived great happiness from the dual support groups, poetry, croquet, befriending some special people, and being on the advisory board for the Alzheimer’s Association’s Early Stages Fall Forum. He loved working under the guidance of Alzheimer’s staff members Vicky, Ken and Sharon. One of his proudest moments came as he was chosen to address the crowd at the Denver Walk to End Alzheimer’s. He spoke beautifully before thousands of people.

Larry lived with Alzheimer’s for more than nine years, doing big jigsaw puzzles, playing games, dancing, singing, and loving life. Sadly and tragically, his life ended too soon. Until the end, he still knew those he loved and who loved him, and was as kind and sweet as he had always been throughout his life. He died very peacefully on Nov. 22, 2015. His memory is a blessing, and his stories live on in those he loved.

In Larry’s memory, I am proud to underwrite the Early Stages programming of the Alzheimer’s Association of Colorado for the coming year through the Larry Schwartz Remembrance Fund. These were interactive programs that Larry loved dearly, and supporting them for other families living with Alzheimer’s is a fitting way to honor his memory.

Top Denver fundraiser enjoys Broncos victory

Devin Olsen, the top individual fundraiser for the 2017 Denver Walk to End Alzheimer’s, was a guest of the Denver Broncos at their recent victory over the Dallas Cowboys. Devin shares her excitement at attending the game, as well as her motivation for creating her first fundraising event for the Alzheimer’s Association of Colorado, a community partner of the Broncos. The sold-out stadium saw information about Alzheimer’s disease, and the family of owner Pat Bowlen presented the Colorado Chapter with a check for $100,000.

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“I was completely in shock when I got a call on Wednesday to attend the Broncos game on Sunday, Sept. 17, with the Alzheimer’s Association and have field access as well, because I was the highest individual fundraiser for the Denver Walk to End Alzheimer’s. I was extremely excited to experience the game and see the Denver Broncos players from the field level for a bit. It was so cool to look up at the 76,000 + people who were cheering for my team, the Denver Broncos, and who were also going to be educated a bit about the Alzheimer’s Association, and how the Bowlen family got involved to honor Broncos owner Pat Bowlen, who is living with Alzheimer’s.

“Yes, I may have been the highest individual fundraiser, but since I have lost two family members to this horrible disease in the past years, I wanted to raise the most money I possibly could in memory of my family members, and for my team, LCC Stonegate, where my team members and I work with residents affected by Alzheimer’s/dementia and their families.

“Thank you, Alzheimer’s Association and Denver Broncos, for inviting me to the game! I greatly appreciated the opportunity and enjoyed the experience of being on the field and the game.”

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