A Cure for His Past, Present and Future

“I’m no scientist or doctor, but I can take my passion in music and use it to hopefully make a positive impact,” shares Chicago musician Bryan Adamick. With his band the Struggs, Bryan is fighting Alzheimer’s disease by raising awareness and funds on the road.

Alzheimer’s has always been a factor in Bryan’s life. “My maternal grandfather suffered from Alzheimers in the late 80’s and early 90’s when I was in grade school,” says Bryan. “We lost my wife’s paternal grandmother to Alzheimer’s in 2013.” About 10 years ago, Bryan’s mother was diagnosed with early onset Alzheimer’s disease. She is now in an assisted living facility as she faces the advanced stages of the disease.

“Alzheimer’s disease takes smart, talented, proud people and turns them into a shell of themselves,” confides Bryan. “While all illness is difficult, Alzheimer’s really puts another level of mental and emotional strain on loved ones, because it feels as though the person you knew and loved for so many years is already lost, and yet, more than ever, they need a great deal of love, care, and extra attention.

Bryan and his family have found help through the Alzheimer’s Association. Both Bryan and his father regularly attend an Association-led support group. Support groups educate and inform participants about dementia and help attendees develop methods and skills to solve problems.

“When my grandfather was suffering from Alzheimer’s…my parents told me that by the time they were older, there would probably be a cure for Alzheimers,” shares Bryan. “Fast forward 30 years and there still is no cure.”

For Bryan, Alzheimer’s disease factors in his past, his present and possibly his future. 

“I’m now married with my own children (7 and 5 years old)…I recognize that there is still no fix in place, and with both my wife and my family prone to this disease, it dawned on me a few years ago that it’s about time I start taking action and doing my part.

Bryan joined the fight to end Alzheimer’s through his musical talents. He is a founding member of Chicago-based band the Struggs. Bryan is a prolific songwriter for the group. He also provides vocals, bass and acoustic guitar at live shows and on their records. 

The Struggs took their music around the region last year through a Summer Tour of Midwest Garages. Many venues were closed due to the pandemic, so they played their blend of rock and alternative country in open garages. Bryan shared his connection to Alzheimer’s disease at every stop and collected donations. With more than 6 million Americans living with Alzheimer’s disease, the band met many individuals who had similar stories. Many fans were inspired to give.

In October, the Struggs lent their energetic sound to the Chicago Walk to End Alzheimer’s. Their music was an up-beat backdrop to the day’s activities. Bryan even got his whole family involved. 

“My favorite part of the Walk this year was seeing my kids starting to understand a little more of what Grandma is going through,” Bryan says. “They learned about the Promise Flowers and what the colors represented and held them up in honor of their Grandma and Great Grandma.”

Are you interested in using a talent or existing hobby to fight the darkness of Alzheimer’s disease? Start a fundraiser with The Longest Day

The Struggs’ newest record Common Sense & Accidents comes out Friday, January 7. It will be available digitally on Spotify, Apple Music, Amazon and most major platforms.

From www.thestruggsmusic.com: Based in Chicago, the Struggs formed from numerous different bands and musical influences to create their own brand of rock/pop/alt country weaving catchy choruses and harmonies with soaring guitar riffs and solos. Established in 2015, they have played a variety of clubs and festivals, most recently raising money for the Alzheimer’s Association on a Summer Tour of Midwest Garages while clubs were closed. In 2022, the band will release its 3rd LP entitled Common Sense & Accidents.

New Phase for U.S. POINTER Study

A large-scale study aims to discover whether lifestyle changes including an increase in physical activity, socialization, cognitive training and healthy diet can prevent dementia.  There has been no drug proven to protect brain health, and researchers are excited about the possibility of finding a different preventative option for those at risk for dementia.

The trial is called the U.S. Study to Protect Brain Health Through Lifestyle Intervention to Reduce Risk (U.S. POINTER).  It aims to enroll 2,000 people and will take place over two years in five major locations throughout the U.S., including Chicagoland. 

The results of a similar study conducted in Finland in 2014 showed that lifestyle changes could make a big impact on brain health.  One of the co-Principal Investigators of the U.S. POINTER study, Dr. Christy Tangney, professor with the Departments of Clinical Nutrition and Preventive Medicine with Rush University Medical Center, states that the Finland study was a “trial where diet, exercise, social engagement, and health monitoring all appeared to protect brain health.” 

That’s great news for those who have been searching for a way to reduce the risk or prevent Alzheimer’s disease and dementia.  Investigators are hoping to build on those positive results in the similar U.S. POINTER study.

Researchers are enrolling men and women, including up to 30% individuals of color, so that the participants represent the American population.  “We want to make sure that in the end, the results apply to everyone,” states Dr. Darren Gitelman, Director of Cognitive Disorders at Advocate Medical Group and Senior Medical Director with Advocate Medical Center.  Dr. Gitelman is also a co-Principal Investigator for the U.S. POINTER study. He states that he is excited about the idea of improving people’s health while preventing or reducing the risk of Alzheimer’s disease and dementia through lifestyle changes.

Benefits of participating in the study include:

  • Professional guidance on eating healthy and increasing physical activity.
  • Tools and connections to continue lifestyle changes even after the study has ended.
  • Benefiting future generations on how to maintain brain health.

It is known that lifestyle changes improve cardiovascular and physical health.  The big question this trial attempts to answer is – can they also improve brain health?

Researchers are optimistic that this study may do what medications have not been able to do so far, which is offer hope for the prevention of Alzheimer’s disease and dementia. 

In the Chicagoland area, the Alzheimer’s Association Illinois Chapter is partnering with Rush Medical Center and Advocate Health Care to facilitate this new trial.  Study groups that will start in the next few months in Chicagoland include Lake Zurich/Barrington, Naperville/Aurora, and Chicago/West Pullman. 

Criteria to qualify for the study include:

  • Between the ages of 60-79.
  • Interested in changing lifestyle habits like activity level and diet.
  • Risk factors such as high blood pressure, high cholesterol, diabetes or family history of dementia.
  • Live in the geographic areas where the study will take place.

If you meet the criteria above, you may be able to participate and contribute to our understanding of how to prevent dementia.  To learn more and be contacted for a screening, please visit:
Rush.edu/pointer or https://www.advocatehealth.com/health-services/advocate-memory-center/research-trials/

Contributor: Ellen Grover, Alzheimer’s Association Volunteer

 

Alzheimer’s Association® Illinois Chapter Names Legislators of the Year

For More Information
Contact: Jen Belkov
Vice President, Public Policy
jbelkov@alz.org

ALZHEIMER’S ASSOCIATION ILLINOIS CHAPTER RECOGNIZES REP. KATHLEEN WILLIS AS LEGISLATOR OF THE YEAR

CHICAGO (Monday, December 13, 2021) — The Alzheimer’s Association Illinois Chapter is excited to name State Representative Kathleen Willis as 2021 Legislator of the Year. This designation is in recognition of Willis’s support of the Alzheimer’s Association, the world’s leading voluntary health organization in Alzheimer’s care, support and research.

During the 2021 legislative session, Representative Willis served as chief House sponsor of Senate Bill 677, Alzheimer’s Association-backed legislation to create the nation’s strongest dementia-specific education mandate for healthcare providers. Thanks to Rep. Willis’s leadership, the bill passed the House unanimously and was signed into law by Governor Pritzker in August.

“Alzheimer’s disease impacts so many people in my district and across Illinois,” said Willis. “I’m proud that Illinois is now leading the nation in our efforts to ensure people living with a dementia receive a diagnosis, and look forward to continuing to collaborate with the Alzheimer’s Association to make Illinois a dementia-capable state.”

The Alzheimer’s Association is excited to continue our critical and effective partnership with Representative Willis and sincerely appreciates all the work she has done on behalf of the 230,000 Illinois residents living with Alzheimer’s disease or another dementia and their nearly 400,000 caregivers.

L to R, David Olsen, Alzheimer’s Association, Rep. Kathleen Willis, Kate Bobbit, Alzheimer’s Association. 

ALZHEIMER’S ASSOCIATION ILLINOIS CHAPTER RECOGNIZES REP. MARIE NEWMAN AS LEGISLATOR OF THE YEAR

CHICAGO (Thursday, December 16, 2021) — The Alzheimer’s Association Illinois Chapter is excited to name Congresswoman Marie Newman as 2021 Legislator of the Year. This designation is in recognition of Newman’s support of the Alzheimer’s Association, the world’s leading voluntary health organization in Alzheimer’s care, support and research.

As a newly appointed Member of Congress, Newman instantly became a leader on the Alzheimer’s Association’s policy initiatives. She was the first member of the Illinois delegation to cosponsor our three current policy priorities: the Comprehensive Care for Alzheimer’s Act (H.R. 2517), the Equity in Neuroscience and Alzheimer’s Clinical Trials (ENACT) Act (H.R. 3085), and the Alzheimer’s Caregiver Support Act (H.R. 1474). All three initiatives are aimed to strengthen the delivery of care and support for those living with and caring for someone with dementia.

“Alzheimer’s disease touches far too many families across Illinois and our entire country. I’m grateful for organizations like the Alzheimer’s Association, which do pivotal work to conduct research and advocate for individuals living with this terrible and heartbreaking disease,” said Congresswoman Marie Newman. “I know personally the pain of seeing a loved one battle Alzheimer’s disease, and that’s why I am deeply honored to be named Legislator of the Year by the Alzheimer’s Association Illinois Chapter. I will continue to advocate in Congress for individuals living with Alzheimer’s and those who care for them. I am thankful that as I do so, I have a partner in the Alzheimer’s Association.”

We look forward to the continuation of this critical and effective partnership and appreciate all the work Representative Newman has done on behalf of the 230,000 Illinois residents living with Alzheimer’s disease or another dementia, and the nearly 600,000 Illinoisans who care for them. For more information, please visit www.alzimpact.org.

L to R, Kate Bobbit, Alzheimer’s Association, Rep. Marie Newman, Brittany Altemus, Alzheimer’s Association. 

About the Alzheimer’s Association Illinois Chapter: The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer’s research, care and support. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Since 1980, the Illinois Chapter has provided reliable information and care consultation; created supportive services for families; increased funding for dementia research; and influenced public policy changes.

Finding Support and Advocating for a Cure

Brandy and her mother.

For Batavia resident Brandy Fernow, “everything changed” for her and her family once they received her mother’s Alzheimer’s disease diagnosis. Despite meeting with several physicians, Brandy noted that there was a huge learning curve that she felt wholly unprepared for.

Brandy had just become a mother herself when her mom was diagnosed, and felt that her mother was slipping away right as she needed her most. Her father took an early retirement to help care for Brandy’s mother as her disease began to progress.

Brandy and her family turned to the Alzheimer’s Association and found comfort and support.

Brandy and her mother surrounded by her grandchildren.

They attended educational webinars about dementia-related behaviors and utilized the Safe Return program. By arming herself with information about her mother’s disease, Brandy felt more prepared to support her dad as he entered into his new role as a caregiver and to support herself as she was raising her own family.

What Brandy wants others to know is that Alzheimer’s is a progressive disease and is fatal. “I had no idea how people actually die from it,” Brandy shared, and she added that the disease involves so much more than forgetfulness and memory changes. She felt particularly ill-equipped to handle her mother’s personality changes and difficulty with speaking and eating that would emerge. These challenges would ultimately result in the family’s difficult decision to move her mother into a memory care nursing home for additional care.

Brandy participated in the Walk to End Alzheimer’s with family, friends and even her mom before her passing. She feels strongly that more advocacy about the disease is needed. She encourages others in her position to “treasure every day,” because Alzheimer’s disease is “the longest goodbye.” Now, Brandy finds meaning by volunteering with the hospice organization that cared for her own mother at the end of her life. She visits patients living with Alzheimer’s disease each week to provide the social and emotional connection that she remembers her own mother enjoying.

Brandy and her family at Walk to End Alzheimer’s.

Since COVID-19 and the onset of new visitor restrictions at several nursing homes, Brandy still finds a way to connect with those living with Alzheimer’s—she and her kids write letters each week to patients living in local nursing homes. Though Brandy’s mother is no longer with her, she has made it her mission to continue to provide the support and connection that people living with Alzheimer’s disease need most.  

Contributor: Amanda Wisinger, Alzheimer’s Association Volunteer

Walk Elite Grand Champion Honors Selfless Grandmother

“A grandmother is something special. Sometimes we don’t realize that until they are gone,” shares longtime Alzheimer’s Association supporter Kari-Ann Ryan. Her grandmother “Nani” lived with Alzheimer’s disease for almost fifteen years until she passed away in 2016. Kari-Ann has been fighting against the disease ever since. 

“My grandmother was all about her family,” says Kari-Ann. “A normal Saturday for me as a child would include spending the day with my grandmother either cleaning her house with her, or a full day of shopping, lunch and more shopping.

“Nani was a beautiful, unselfish, caring, loving, individual who put many things above herself…We all came first in her eyes.” 

Kari-Ann helped care for Nani during her fifteen-year battle with Alzheimer’s disease. Kari-Ann says she “mourned my grandmother’s death years ago” as she progressed into the later stages of the disease.

“I tried to be strong every step of the way because all I could hear was Nani telling me, ‘Please stop crying Kari-Ann, it will all be ok. It is going to be ok.’

“So I ask, how does someone with so much to give deserve to be stripped of herself, her memories, her personality, her love?” 

This is where Kari-Ann’s record-breaking Walk to End Alzheimer’s story begins. 

She started team Lost Souls in 2009 in an effort to control an otherwise uncontrollable situation. Kari-Ann first walked in the Naperville Walk to End Alzheimer’s, and increased her involvement to become the Chair of the Northwest Suburban Walk for many years.

Beyond her personal volunteerism, fundraising and efforts to raise awareness, she captains team Lost Souls—the second highest fundraising team in the state! Over the past 7 years, they have raised almost $250,000 for Alzheimer’s care, support and research.

“We have nothing if we do not have our memories and experiences,” Kari-Ann shares. “I fight so no one else has to go through what I went through as a granddaughter. I fundraise so no other daughter or son has to watch their mother or father forget who they are and the things they have experienced together. I share my story so people know they are not alone.”

Kari-Ann and Team Lost Souls host events throughout the year to raise money and awareness. Their efforts include hosting baseball games, restaurant fundraisers, t-shirt sales, virtual bourbon tastings, raffles and motorcycle runs. 

Most recently, Kari-Ann partnered with Studio 19 in Schaumburg to promote a purple hair extension fundraiser in honor of National Alzheimer’s Disease Awareness Month. Half of all purple hair extension sales go towards Kari-Ann’s Walk to End Alzheimer’s fundraising. 

Whether it’s partnering with local businesses, recruiting family and friends or leading a committee of passionate volunteers, Kari-Ann is an invaluable champion in the fight to end Alzheimer’s. As Kari-Ann says, “Together a cure is in sight.”

Support team Lost Souls and learn more about the Alzheimer’s Association’s vision of a world without Alzheimer’s and all other dementia.