The Longest Day: Gerry Smirga and the Mark Twain Casino

After watching Alzheimer’s disease take a hold of his beloved aunt, Gerry Smirga knew he had to help try and make a difference.

“My Aunt Gayle’s experience made me want to help others not to experience the same sadness,” Gerry said “ I saw the impact it had on her and her children, which made me want to get involved.”

Serving as the Vice President and General Manager of Mark Twain’s Casino, Gerry decided to invoke his passion for fundraising by participating in an Alzheimer’s Association charity dinner at the casino’s La Grange location.

Gerry’s participation and contribution supports key research and care efforts needed for those living with this devastating disease. His donations also fund several care and support programs which help reduce strain on families, an issue Gerry is all too familiar with.

“I was always taught the importance of giving back to our community, and helping raises money to help others in need is important. It was hard to see my aunt suffer with this disease,” Gerry said. “Anything I can do to help those who are suffering and ultimately help raise money for a cure is my goal.”

This year, Gerry will continue to raise critical awareness and funds for the Alzheimer’s Association by participating in The Longest Day.

Mark Twain Casino will be holding a slot tournament on June 21 from 8 a.m. until midnight. It is $10 to enter and all the proceeds will go directly to the Alzheimer’s Association,” Gerry said. “Mark Twain Casino will provide the prize pool for the winners. It is open to anyone 21 years of age or older and individuals can play multiple times.”

Gerry believes participating in The Longest Day is not only vital for fundraising, but also an opportunity to get involved with the community.

“Others should participate in the Longest Day not only to raise money for the Alzheimer’s Association but to also have some fun. The Longest Day event definitely helps put the “fun” in fundraising.”

For more information about the slot tournament on June 21, visit www.marktwaincasinolagrange.com To learn more about The Longest day, visit alz.org/thelongestday

Crafting for a Cause

The Northminster Presbysterian crafters have been crafting for over a decade. An array of women, the crafting group has members of all ages who enjoy to craft, sew and give back to their community.

fidget quilt 1A few years ago, a member encouraged the group to start using spare scraps of fabric and gadgets to create fidget quilts for the Alzheimer’s Association, Central Illinois Chapter.

These unique quilts are small “lap blankets” made up of a variety of different patterns, textures, and objects that can be moved and manipulated to provide sensory stimulation. Fidget quilts are often used by those in the late stages of Alzheimer’s disease or dementia, when they may lose interest or awareness of surroundings. The sensory stimulation from the fidget quilts helps release pent-up energy and provides a meaningful activity for those with dementia.

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Fidget quilt squares before being sewed together.

The women of the Morthminster Presbyterian Crafters all play a role in making the fidget quilts. From cutting the fabric squares and sewing on gadgets, to adding the backing and inscribing a special phrase, the fidget quilt truly is made with love from a number of people. Since the inception of the idea, the Northminster Presbysterian Crafters have sewed around 100 fidget quilts.

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The handmade fidget quilts are available through the Alzheimer’s Association, Central Illinois Chapter., 612 W. Glen Ave., Peoria, IL 61615 or 309.681.1100. Donations are accepted.

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A completed fidget quilt made by the Northminster Presbyterian Crafters

Thank you to the Northminster Presbyterian Crafters for your donations of fidget quilts.

 

A Forgotten Lifetime: Story by Ian Heinze

The following segment is a personal essay from Ian Heinze during his time at Quincy University

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“In the early stages once my family had discovered what was afflicting her, my Grandma (Norma Heinze) was still coherent enough to realize that something was wrong.  I’ll never forget one of the most horrifying moments of my life; my father went to Grandma’s house to check in on her, only to find her surrounded by Bibles and crucifixes exclaiming that the devil was pursuing her.  She had fallen victim to a tragic disease (Alzheimer’s), which was toying with the mind of its unsuspecting host. Unfortunately we misperceived additional subliminal messages, the amazing cook of years past now began to burn dishes; and the precise seamstress couldn’t remember how to sew a simple shirt.

My Grandma was once one of the strongest women I knew; deeply rooted in her faith, never complained, and always did anything and everything she could, to help others.  Now, as this horrible disease takes over her brain, I discover she has become a shell of her former self.  The wisdom, happiness, and strength I once knew, has turned into anger, absentmindedness, and sorrow.  Even now, after watching her progression slowly get worse month after month, I still find it incredibly difficult to witness.

As a child, whenever I would bounce into her house, I would always find her either cooking or working on a crossword puzzle.  Now as I plod into the nursing home to see her, I see her staring at a blank wall, emotionless.  As I struggle into the Alzheimer’s section, it really tears me up to see the state of the patients there.  Many sit, staring off into space, daydreaming and locked in a state of incomprehension.

My Grandma has always been bad with names.  For as long as I can remember I’ve been called almost every male name in the family.  Maybe it’s because of this that we didn’t catch the warning signs of Alzheimer’s, or that we brushed them off as just Grandma being Grandma.  Today we’re stuck wondering what could have been if we would have realized the storm that was brewing.  For years now, we’ve watched helplessly as Grandma slowly lost her memory and became dependent on help for even the simplest of tasks.

Absentmindedness, trouble conversing, remembering names, or questions having to be repeated—these are serious indicators that a loved one has Alzheimer’s.  The characteristics my Grandmother most proudly displayed are now but a whisper in the wind, a distant memory.  Her faith has been stolen, her family has transformed into strangers, and her mind has been erased. How could she ever recognize family members when she does not possess the ability to recognize herself?  She has become in essence, a living corpse.

Though her body is no longer controlled by a mind filled with a lifetime of knowledge, her heartbeat still pounds on strong as a horse.  The steady pulse of her 009.JPGheart could continue on for a multitude more years, condemning her to remain in her current state of constant bewilderment.  Her mind was once a beautifully painted canvas nearing completion; only to have each stroke torn away to reveal a stark white sheet.  She has been defied of  perhaps the most important and cherished aspect of human life— ones memory.

To this day it is still extremely hard to see what has become of one of the strongest women I’ve ever met.  Words still force their way out of her lips, but sentences rarely form.  Cloudy eyes stare out windows and see figures in the tress; these same eyes that don’t recognize friends, family, anyone.  The smiles I was once used to seeing as a child are now worthy of a phone call to the family if I’m lucky enough to get one.  Alzheimer’s has stolen much more than just her mind.  It has taken away her future, her memories, and her happiness.

I’ve already lost my Grandma to this horrific disease; I don’t want to lose anyone else, especially family members.  As a nation, there needs to be more support and funding going into 012.JPGAlzheimer’s research.  A cure needs to be found at any cost.  All that’s necessary is to walk into an Alzheimer’s section of a nursing home for five minutes to understand how truly horrifying this disease is.  In five minutes, you can experience all the sorrow, suffering, and torture that the afflicted have to go through every single day.  This disease is unfair and is destroying lives at an astonishingly fast rate

When I was younger, sometimes I was asked what I feared the most.  I answered with my childhood phobia of heights or dying.  Now if you questioned me, I would respond that my greatest fear is falling prey to this terrible disease.  This disease is 100% worse than death.  I can’t imagine the state of terror people with Alzheimer’s must be in.  To not know who you are, to not have any memories, to not even be able to communicate or function without assistance.  I’d be hard-pressed to come up with a more bleak future.”

To learn more about the Alzheimer’s Association and Alzheimer’s disease visit alz.org/illinoiscentral 

Why I Walk: Tyler

“I’m Tyler Frump and I’m going to tell my story about how Alzheimer’s has affected me. When I joined Sigma Kappa, a sorority on my college campus, I didn’t really join because of the philanthropies like other girls did. Although I’ve supported the service Sigma Kappa has done during the three years I’ve been a part of it, it wasn’t until recently that I realized  just how important one in

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Tyler and her sorority sisters at the 2015 Quincy Walk to Eparticular would become in my life

 

particular would become in my life.

Have you ever got that feeling when your stomach drops to the floor and you just want to scream inside and cry until you can’t cry anymore? That was how I felt when two years ago my great aunt started to have the same conversations with me twice or even three times. I thought maybe she just forgot.

When my mother called me after classes a little under a year ago to tell me that my great aunt had fallen and had been diagnosed with Alzheimer’s at the hospital, I was devastated. She was told that she had 6 weeks to 6 months left to live. During the past year, I’ve had two relatives and my best friend pass away and I wasn’t able to say goodbye. I wasn’t going to let that happen again.

When I went home for my family reunion, I realized that two other relatives had the onsets of Alzheimer’s, too. After composing myself, I drove to the nursing home to say my goodbye hoping that she would remember me. I sat down and started talking. It was about halfway through my sentence that I realized the look in her eyes. She didn’t remember me. She wouldn’t remember the first time I ran screaming through her house eating all of her chocolate, she wouldn’t remember the times she taught me how to be a lady and how to sew, she wouldn’t remember my goodbye. I just want her to be able to remember.

Although she has been blessed with more than the 6 months they gave her to live, her Alzheimer’s isn’t going away and she still doesn’t remember me. Sigma Kappa sisters around the country have been and are coming together to raise money for the study of Alzheimer’s.

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Sigma Kappa sisters creating a human Alzheimer’s Association logo 

I need your support to do my part! Please make a donation to help the Alzheimer’s Association advance research into methods of treatment, prevention and, ultimately, a cure for Alzheimer’s.  For the millions already affected by the disease, the Association offers care, education, support and resources in communities nationwide. The end of Alzheimer’s disease starts with you and I hope someday that all these donations will help me and my family never forget.”

Tyler is participating in the Quincy Walk to End Alzheimer’s as a Sigma Kappa: Beta Mu Chapter team member. She hopes to raise $1,500.

Want to join Tyler in her fight against Alzheimer’s and other dementias? Register for your local Walk to End Alzheimer’s today!

Want to share your “Why I Walk” story? Email lgunty@alz.org for more information 

 

 

Why I Walk: Carissa

“I walk to support my grandma, Nan, who has Alzheimer’s. Right now, she still lives at home with my grandpa, and they have a home health aide come in from 7 a.m. – 1p.m. Nan has always been my rock. I am a nursing major and she loves telling everyone that I am the family nurse. I am already a CNA, so I know a lot about Alzheimer’s and dementia. The effects of it are unbearable to watch. Right now, I would say that Nan is between the 5th and 6th stages, with some leeway. She still knows who everyone is and she knows my family, and we are very thankful for that. She is starting to imagine things or even hallucinate, we are not quite sure, since this is very recent.

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Carissa and her Nan

Sometimes, I will be sitting with her and she will ask, “Well where did you go?” I would ask her who she is talking about and she said me. I said “I’m right here, Nan”. She thought that I had left the room. She has also tried talking to her youngest grandson, who is 3, when he is not there. She acknowledges him and believes he is there, but he is not. It is hard for us to watch this disease take over her mind, but I know she is still my Nan, and she is still in there.

About a year and a half ago, she had a small stroke that fast forwarded her Alzheimer’s. Ever since then, it has been progressing very fast. She has many falls, but luckily she has only had one tiny fracture in her wrist.

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Carissa’s tattoo that she designed in honor of her Nan

A year ago in May, I decided I wanted to get a tattoo for her, because I did not know how long it would be before she would degrade even more. I designed the tattoo myself, and it says “Forget me not”. The “o” on the “forget” is the Alzheimer’s Association symbol. When I showed her, she cried and  cried and she told me she would not forget.

 

 

After that summer, it was time to go off to college at Bradley University. It was my freshman year and the thing to do was to join a sorority. This was the best decision I’ve ever made. When visiting Sigma Kappa, the first thing I saw was the “Alzheimer’s Association” written in the “a” of the Sigma. It was one of their many philanthropies. As soon as I saw it I knew this could easily be my new home. After learning more about the ways Sigma Kappa helps Alzheimer’s Association, I was compelled to join. I received a bid and could not wait to tell Nan everything we would be doing to raise money to help people like her.

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Carissa and her Sigma Kappa sisters at the Peoria Walk to End Alzheimer’s in 2015

Our first event was the Walk to End Alzheimer’s. All together, we raised a little over $10,000. This year, we hope to raise even more. Walking that day with my sisters was something I will never forget. It showed me how many people knew exactly what it was like to have a family member living with Alzheimer’s. I felt the care and support through Sigma Kappa that will never be forgotten.

Sigma Kappa chapters all over America have recently reached our goal of $1,000,000 three years WAY ahead of schedule! This is outstanding to me. It really does mean a lot to me, and I do it all for Nan.

Recently, our family has been struggling with trying to make decisions on what we should do about care for Nan because we know that she needs more than just 7 a.m. – 1 p.m. care. However, my grandpa, being the stubborn one, refuses to go anywhere because of the expenses. He also rejects the idea of a nighttime nurse to help out because of the expenses as well.

It has been a little rough lately with Nan as now she mostly does not have any more “good days”- they are mostly bad. Each day she progresses worse and worse and this disease takes a little more of her memory one piece at a time. However, I know that she will never forget me, she will never forget my family. Nan will always be Nan on the inside, and I ask people to help in any way they can for her. To help for the others in the nursing homes, to the ones that don’t remember their own family, and to the ones that need the care the most.

In my sorority, my “big” is currently the philanthropy chair, and I wish to take over her spot when it comes time to pick new chairs. Sigma Kappa does an extraordinary job at getting the word out and raising money for the Alzheimer’s Association, and I am so so beyond blessed to be a part of such a wonderful organization.

Very recently, within the past three weeks or so, I have been interested in pursuing a minor in Neuroscience. I wish to do this to know more about the brain and Alzheimer’s. Maybe even find a cure. There is a cure out there, it is just a matter of finding it.

Alzheimer’s does things to a person that many cannot understand. For example, a lot of Nan’s actions don’t make sense, and she knows that. Recently, she tried to flush her sock down the toilet just because. We asked her why and she says “I don’t know, I just can’t remember”. Her sentences have become a word salad. Most of the time it is very difficult to comprehend what she is trying to say. If she can’t  get it out, she shakes her head in disappointment because she knows she is trying so hard to remember and to get it out. She knows that she is not doing well. She knows that she cannot remember. She knows that the things she does is silly and do not make sense. But what she does not know is why. She asks me constantly, “Missy, why can’t I remember?” I have to respond with “It’s just the Alzheimer’s Nan, it’s not you. It’s the Alzheimer’s.”

I constantly pray that there will soon be a cure for this disease.  This is a beyond heart-wrenching disease that I believe some people do not witness first-hand and I hope that my story inspires others to donate or to spread the word, for people like Nan. One of my favorite quotes that we use in Sigma Kappa for the Walk to End Alzheimer’s is, “Never Forget Those Who Cannot Remember.””

Carissa is participating in the Peoria Walk to end Alzheimer’s as a Sigma Kappa Beta Nu team member. She hopes to raise $500 in honor of her Nan.

Want to join Carissa in her fight against Alzheimer’s and other dementias? Register for your local Walk to End Alzheimer’s today!

Want to share your “Why I Walk” story? Email lgunty@alz.org for more information 

 

Why I Walk: Melanie

“On December 12, 2013, my family received the news my 59 year old mother had been diagnosed with frontotemporal dementia (FTD). It didn’t take long to search the internet and figure out how terrible this disease was and how our lives were going to change very quickly.

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Melanie and her mother

While the Alzheimer’s Association is easily identified as a resource for those living with and caring for individuals with Alzheimer’s disease (the most common form of dementia), many people do not realize their services are available to caregivers and those diagnosed with other forms of dementia.

I walk to raise awareness for other types of brain diseases. Numbers of people, even the most educated doctors, have not heard of FTD and are not familiar with the signs and symptoms. Much like Alzheimer’s it is difficult to diagnose and can be mistaken for other illnesses or disorders.

 

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Melanie, her dad and her sister at the 2015 Quincy Walk to End Alzheimer’s.

Last year was my first year participating in the Walk to End Alzheimer’s but it won’t be the last. While there is no cure for dementia, and it is ultimately fatal, I hope with the work the Alzheimer’s Association is doing and the awareness walk participants are bringing to the disease, there one day will be. By calling attention to the disease, I hope others become familiar with the signs, symptoms and overwhelming statistics.

 

The company I work for, Dot Foods, became a National sponsor in 2015. The founder of Dot Foods was stricken with Alzheimer’s so it hits close to home for many employees. Last year, as a company, we contributed over $151,000 to the Association. Our largest fundraiser in our Illinois location this year will, be the Beat You Muddy obstacle run. Dot will match dollar for dollar all proceeds from this fundraiser.” Find out more about Beat You Muddy here.

Melanie is participating in the Quincy Walk to end Alzheimer’s as an Illinois DotFoods team member. She hopes to raise $500 in honor of her mother, who passed at the age of 61 on May 16, 2015.

Want to join Melanie in her fight against Alzheimer’s and other dementias? Register for your local Walk to End Alzheimer’s today!

 

Want to share your “Why I Walk” story? Email lgunty@alz.org for more information 

 

 

Why I Walk: Kelsey

Kelsey Moore of Abingdon, IL attended her first Walk to End Alzheimer’s with her family at the 2015 Macomb Walk to End Alzheimer’s and since then, she has launched full force in the fight against Alzheimer’s.

12087315_10153038035891583_9148761045603417686_o.jpgKelsey is motivated to help end Alzheimer’s by the loss of her three family members. Her great-grandfathers, Charles Sharp and J.L. Cook, both passed from the disease, as well as her grandpa, Glenn Moore.

“I’ve been able to see firsthand the caregiver side of the experience, as well as witness what the person with Alzheimer’s disease goes through,” said Kelsey. It is these experiences that are motivating Kelsey to raise more funds and awareness to end Alzheimer’s disease. She is participating in the Knox-Warren Walk to End Alzheimer’s on Saturday, September 24 and hopes to raise over $500 in honor of her family.

 

Alzheimer’s disease is the 6th leading cause of death in the U.S. and is the only one in the top ten with no way to prevent, slow or cure it. With over 220,000 persons with Alzheimer’s and 590,000 caregivers in Illinois, Kelsey wants people to know that the funds raised through the Walk to End Alzheimer’s serve an important purpose. Each dollar raised helps provide care and support to local people living with Alzheimer’s and their families and helps advance crucial research, with hopes that we will soon find a cure.

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Kelsey and her family at the 2015 Macomb Walk to End Alzheimer’s

 

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Participants of the Macomb 2015 Walk to End Alzheimer’s participate in the promise garden ceremony

 

“My favorite part about the Walk was the promise garden flowers- being able to see the different groups of people in the community  come together and how Alzheimer’s affects way more people than you realize.”

 

 

 

Want to join Kelsey and your community in the fight to #ENDALZ? Visit alz.org/walk to sign up for your local Walk to End Alzheimer’s today! 

 

 

Interested in sharing your Why I Walk story? Email lgunty@alz.org