Month: September 2019

By: Jessica Fox

My grandfather and I were wrapped around each other’s fingers. Growing up, he jumped on the trampoline and played everything with me from soccer to ping pong, and our favorite sport, basketball. I always rode in the combine with him during harvest and we always ate “too much” ice cream together. (I get my sweet tooth from him). No matter how busy he was, he always made time for his family. My grandparents were junior high sweethearts and had been married for 64 years before he passed away from Alzheimer’s in 2011. I was in high school and watching his mind deteriorate was, and still is, the hardest thing I’ve ever experienced. My grandmother, mother, and I would visit him in the nursing home as much as possible. We were “his girls.” Even when he started to really fail, if one of us would place our hand on his, he would try his best to squeeze it. He could not talk or show any emotions, but he knew we were there with him.

My grandfather and I were wrapped around each other’s fingers. Growing up, he jumped on the trampoline and played everything with me from soccer to ping pong, and our favorite sport, basketball. I always rode in the combine with him during harvest and we always ate “too much” ice cream together. (I get my sweet tooth from him). No matter how busy he was, he always made time for his family. My grandparents were junior high sweethearts and had been married for 64 years before he passed away from Alzheimer’s in 2011. I was in high school and watching his mind deteriorate was, and still is, the hardest thing I’ve ever experienced. My grandmother, mother, and I would visit him in the nursing home as much as possible. We were “his girls.” Even when he started to really fail, if one of us would place our hand on his, he would try his best to squeeze it. He could not talk or show any emotions, but he knew we were there with him.

Ever since my grandfather was diagnosed with Alzheimer’s, my family has been donating to the Alzheimer’s Association. It was not until 2015, though, that I became personally involved with the organization. That year, I competed in the Burlington, Iowa RivALZ Blondes vs. Brunettes Powderpuff Flag Football Game. I played in memory of my grandfather and wore his high school number on my jersey with “Grandpa Gene” on the back. I have played on the Blondes team each year since then, and each year I set a goal to raise more money than I did before. So far, I have met that goal and I have raised more than $5,000. However, this year, the game was canceled so things are a little different. I’m also still raising money for the Quincy Walk to End Alzheimer’s, which took place on Saturday, September 14, 2019. I hope to raise at least $2,000 by the end of this year.

In addition to these events, I have spread awareness for the Alzheimer’s Association by using my pageant crown as a spotlight. I have participated in various pageants through the Miss America Organization since 2015 and currently, I hold the title of Miss Quincy (IL) 2019. As a titleholder, one must have a platform they are passionate about to promote and support throughout their year. My platform is “Memory Matters – Alzheimer’s Awareness” in honor of my grandfather. During parades, I pass out bookmarks with information about Alzheimer’s to bystanders. These bookmarks are provided by the Quincy Alzheimer’s Association. I also added the Alzheimer’s Association logo to my magnetic car signs. Throughout my year, I have focused on raising awareness and funds through various events, volunteering, and becoming an official spokesperson for the Alzheimer’s Association.

My favorite appearance as Miss Quincy is anytime I can perform my 90-second talent. I performed this talent at Miss Quincy and again at Miss Illinois. My talent is speed painting a tree. The painting symbolizes the Alzheimer’s disease and my hope for a cure. The leaves are purple, the color for Alzheimer’s awareness, and the background is grey to represent the grey matter in the brain that is affected when someone gets Alzheimer’s. There are multiple butterflies flying away from the tree, which symbolizes a sign from a loved one in Heaven and/or memories floating away. Among the roots is the Alzheimer’s Association logo in purple glitter. I perform this talent at local memory units and donate the 36”x48” canvas for the residents to enjoy. To help the residents remember and understand the meaning of the painting, I included an “In Loving Memory of Eugene Thorell” framed write-up, which explains the painting while also honoring my grandfather.

Being involved with the Alzheimer’s Association is near and dear to my heart because I do not want anyone to experience the pain my family did. Alzheimer’s is hard on the person living with the disease but even harder on the family. Near the end of my grandfather’s life, he could not talk or show any emotions, but he knew when his family was there with him. During his final day with us, I laid beside him with my head on his chest and my grandmother and mother held his hands while he passed away. Again, I know he knew we were there as God took him to his eternal home in Heaven. My grandfather showed love to everyone he met, worked hard for his family, and was a true servant of God. His name was Eugene Thorell, and he was the best man anyone could have ever met.

Until we meet again, Grandpa.

With love,
Jessica

More than 350 people are expected to attend the 13th annual Memory Rock Chicago fundraiser on Thursday, October 3, 2019 at Old Crow Smokehouse in River North. Memory Rock Chicago Committee Chair, Andrew Wiedner, says he became involved with the event when Alzheimer’s disease touched his life personally.

“My grandmother, Alyce, lived with Alzheimer’s disease for over 20 years,” says Wiedner. “She was a wonderful person and full of life, but the disease slowly took over and diminished her quality of life. The impact on both the individual and family are significant and something that no one should have to experience. “

Year after year, the Memory Rock Chicago Committee is united by a desire to see an end to this devastating disease. However, according to Wiedner, there is one unique fact about the event’s inception:

“Memory Rock was actually started by someone who has no personal connection to the disease.”

Steve Monroe, Committee Member and Founder of Memory Rock Chicago, came up with the idea for the rock concert benefit after witnessing his friend’s experience with the disease.

 “Years ago, I worked with a young woman whose father had passed away after living with younger-onset Alzheimer’s. Unbelievably, her mother was also diagnosed with it,” says Monroe. “As I learned a bit more about Alzheimer’s, we thought it was important to do something and to raise awareness. Thus, we asked Joe’s Sports Bar to host a concert, and we got a couple of local bands to play. It took off from there.”

Memory Rock Chicago brings people together from all across Chicagoland for an unforgettable evening of live music, drinks, dancing and more. Guests can also enter to win lavish prizes during the raffle and silent auction, such as Cubs tickets, boxing classes, a signed Rolling Stones album, restaurant gift certificates, Chicago tour tickets, yoga and meditation classes and a signed Tiger Woods Masters Flag. All proceeds from Memory Rock Chicago benefit the Alzheimer’s Association Illinois Chapter, and last year’s event raised more than $116,000 for Alzheimer’s care, support and research efforts. According to Monroe, the concert’s impact has grown substantially over the past 13 years.

“We raised about $3,500 at the first event. As the event grew, we gained wonderful sponsors like Bill and Dan Barry, and now we raise over $100,000 per year.”

Tickets for Memory Rock Chicago include guest entry, appetizers, open bar, silent auction, raffle, live entertainment and more. Tickets are now on sale and can be purchased online at www.memoryrockchicago.com.  

“It’s a great time with fun people and big energy from the live bands, all while raising money for a great cause – truly a night not to miss!”

My mother Betsy was diagnosed with early-onset Alzheimer’s at the young age of 55 years old.  We saw signs that something was wrong before her diagnosis, and her employer even called us to express concern over her behavior at work.  We initially thought my mom had a hearing problem because we would talk to her and she would do something other than what we discussed or immediately would forget what we talked about, but we never imagined that she had Alzheimer’s, as we learned after multiple doctors visits and tests. 

My parents divorced when I was very young. Sadly in her mid-50’s, my mom was no longer able to work, and we did not want her living alone.  We sold my mother’s home, and she moved in with my beloved Grandmother so she could care for her.  We saw the incredible toll caring for my mother took on my Grandmother, but she watched over her until it was too much for her, and she could no longer leave my mom alone because she started to wander.

My mom lived in a facility for two years before she died in 2013 at the age of 62, but she was never far from my grandmother’s thoughts.  In fact, my grandmother died 10 days after my mother’s death, because her job was done.  

In 2017, the Alzheimer’s Association Illinois Chapter established a task force to explore the impact Alzheimer’s has on women. This led to the creation of Illinois Women Conquer ALZ (IWCA), the first women’s group for the Illinois Chapter.  I was asked to Chair the group and joined the Board of the Illinois Chapter in the summer of 2017.  Now, almost two years later, IWCA has grown to over 70 members and has raised over $100,000. IWCA has provided multiple education programs and networking opportunities connecting women that share our passion for ending this disease. IWCA also held two very successful fundraising celebration luncheons called Power of Purple–which raised critical funds and awareness of Alzheimer’s impact on women. In 2018, we also had our first IWCA Walk team participate in the Chicago Walk to End Alzheimer’s!

I do the work I do for the Alzheimers’s Association because watching my mom slowly slip away way was heartbreaking and took a tremendous toll on our family.  I want to do more to make an impact.  And unfortunately, stories like mine are not unique.

Women are at the epicenter of the Alzheimer’s epidemic, and the stats are astounding. Of the 5.8 million Americans living with Alzheimer’s, two-thirds of them are women. Women in their 60s are more than twice as likely to develop Alzheimer’s disease over the rest of their lives as they are to develop breast cancer.  Not only are women more likely to have Alzheimer’s, they are also more likely to be caregivers of those with the disease.  In the United States alone, about 13 million women are either living with or caring for someone with Alzheimer’s disease.

It is because of all of these reasons that IWCA was formed to engage and empower more women in the fight against Alzheimer’s. This year we are once again Walking as a team, so together we can raise critical funds to help provide education programs, care and support to those struggling with the disease in Illinois and to drive research towards treatment, prevention and ultimately a cure.  

I Walk because I lost my mother, my children lost their grandmother and my grandmother lost her daughter far too young… and I am not alone.  I Walk so that one day other families won’t suffer as mine did.  I Walk so hopefully one day there will be a world without Alzheimer’s.  

Please click on the below links to register to Walk with the IWCA team at either of the three Walks listed below.  Registration is easy!  If you are unable to participate please consider making a tax-deductible donation-any contribution helps those impacted by this horrible disease.  

Chicago Walk to End Alzheimer’s

North Shore Walk to End Alzheimer’s

Naperville Walk to End Alzheimer’s

To learn more about IWCA, click here.

I hope to see you in a sea of Purple joining us to Walk to End Alzheimer’s this fall.

By: Emily Wisner

With a degree in business education, Karen Weede knew something was wrong when she could no longer balance her checking account. As the keeper of the household finances, she loved paying the bills, keeping financial records, and handling investments. “Initially, I was frustrated and angry that I wasn’t able to keep up with my bill paying and investments,” Karen said. She had to explain her processes and share passwords with her husband Jim, and he gradually took over. “I am still part of any financial decision but no longer handle all of the paperwork and routine decisions,” she said. “Taking care of our money was a very important part of my personality and life.” 

Karen’s financial capabilities weren’t the only major part of her personality that she saw changing. “I was a person who was full of ideas and could present these ideas, organize groups of people to complete the tasks, and carry the goal through to the end,” she said. “I was blessed with the ability to organize and work with people.” Karen found herself turning down requests such as running a fundraising effort and gathering volunteers for a church bazaar. “People did not understand why I was no longer a leader and someone who could get things done,” she said. “I was embarrassed and frustrated that I couldn’t handle the stress involved in taking on responsibilities that I always found fun.”

In the spring of 2017, Karen began having trouble with daily tasks such as filling the car with gas, putting a CD in the player, and finding an elevator button. She shared her concerns with her internist, and after much testing including an MRI, EEG, PET scan, and a three-hour cognitive test with a neuropsychologist, she was diagnosed with mild cognitive impairment due to small vessel disease. The PET scan showed amyloid plaque, but the cognitive testing led to the conclusion that she did not have Alzheimer’s disease.

Karen was told that there was nothing she could do except to control her stress. “I felt like I had walked into a brick wall, and an important part of my life had ended,” she said. “I was devastated but decided to find ways to fight my disease.” After extensively researching Alzheimer’s disease, memory loss, and dementia, she found many suggestions, some substantiated with clinical studies and others not. She now exercises more (which sends oxygen to the brain), eats food believed to be good for brain health, and immerses herself in music, art, and learning new subjects to continue stimulating her brain.

In addition, Karen signed up for the Alzheimer’s Association’s TrialMatch and has participated in five clinical trials. None of the trials included drugs; instead, they gathered biomarkers that go into a database, so scientists can more easily access and analyze large amounts of data. It is important to Karen to participate in clinical trials because she believes they will lead to a cure. 

Although Karen’s diagnosis has caused some major changes in her life, she is grateful to have discovered it early. “My early diagnosis has enabled Jim and me to meet with our lawyer and rewrite our trusts, powers of attorney, and health care directives,” she said. “We live in a large house and have begun cleaning out all of the extra stuff we have accumulated. Jim and I are on a journey together, which is already changing our relationship. We are gradually learning how to react to each other as my behaviors change.”

Recently, Karen had an encouraging appointment with her geriatrician. “My annual cognitive testing showed that I have remained stable, and she says I am an anomaly,” Karen said. “I am, however, taking Namenda, a drug approved for the treatment of vascular dementia and Alzheimer’s disease. It has made a huge difference in my functioning.” Karen and her husband continue to travel often, and she is a volunteer tutor in an after-school program for disadvantaged children. “Life is a journey, and we have chosen to be thankful for every day that I am still able to participate normally in everyday life,” she said. “I work hard to be positive, and I thank God each day because my memory is holding steady.”

This summer, Karen joined the Alzheimer’s Association 2019-2020 National Early-Stage Advisory Group. “Our ESAG group will be the face of Alzheimer’s and dementia this year,” she said. “We want to do our part to remove the stigma of memory loss that interferes with daily living and, also, to bring the Alzheimer’s Association’s education and community support services to areas outside the major cities in our states.” As part of ESAG, Karen says she will also, “advocate with our legislators, speak to groups, interact with the media, and even create a team for the Walk to End Alzheimer’s.”

This year’s Walk to End Alzheimer’s is particularly meaningful for Karen. “I am ‘coming out’ to many friends and acquaintances in Quincy who did not know I had been diagnosed in 2017,” she said. “If I am trying to put a face on Alzheimer’s disease and dementia (besides the image of someone who can’t remember or take care of themselves) then I have to be open about my diagnosis.”