Why I Walk…Christie’s Story

Christie Boody is participating in the Chicago Walk to End Alzheimer’s on Saturday, October 9 in honor of her father, who she lost to Alzheimer’s disease. This will be her sixth time walking in his honor. 

Christie shares, “Every year we do it it’s so inspiring to see everyone come together to end this terrible disease. I always find hope that we will find a cure and we are getting closer each Walk!”

Held in 24 locations around Illinois, the Alzheimer’s Association Walk to End Alzheimer’s is the world’s largest fundraiser for Alzheimer’s care, support and research. This inspiring event calls on participants of all ages and abilities to join the fight against the disease. 

Illinois has 230,000 residents living with Alzheimer’s disease and 381,000 caregivers. “This is a terrible disease and you don’t know if you will be put in a position of someone having it close to you,” says Christie. 

Christie wants those that haven’t experienced the disease first-hand to know that “it’s one of the hardest things to watch a loved one forget who you are and all the memories you made with them. To have to remind them who you are is an unexplainable feeling that just breaks your heart.” 

Christie is joining other Walk participants across the state this fall to raise critical funds and awareness for families and individuals. Every dollar they raise funds 24/7 care and support services and advances research toward methods of prevention, treatment and ultimately a cure.

Register for your local in-person Walk to End Alzheimer’s at alzheimers-illinois.org/walk. We will continue to closely monitor CDC, state and local guidelines to ensure Walk events adhere to recommendations and are safe for attendees. If you prefer to Walk From Home, you can still engage in many Walk-day experiences through our mobile app.

Why I Walk…Trista’s Story

“It means a lot to be able to give back,” says Trista Waters. This is her first year participating in the Peoria Metro Walk to End Alzheimer’s on Saturday, October 2. Trista’s mother was diagnosed with Lewy Body Dementia two and a half years ago. 

“They told her at that time she had been living with dementia for four years already. My mother is 68 and lives in Alaska, and I may never be able to have a conversation with her again over the phone. I know one thing I can do is try and help fight this disease…I feel in life we can’t control everything that happens but we can control how we deal with it.”

Trista is determined to raise funds and awareness for Alzheimer’s disease. “We have to fight this,” she says. “More and more people are losing their lives to this disease and we need all the funding we can get to help families get the resources they need.

“It’s heartbreaking watching your loved ones deteriorate. Dementia takes everything from you, they don’t know who and where they are and they forget their loved ones. You pretty much are just constantly mourning the loss of your loved one that is still here.”

Trista has felt helpless living so far away from her mother. Yet participating in the Walk to End Alzheimer’s gives her purpose. 

“This is the only thing I know I can do. I just know with me raising as much money as I can, I will help end Alzheimer’s and other dementia…we need a cure!”

Walk with Trista towards a future without this disease at one of our in-person Walk to End Alzheimer’s events, or Walk From Home with the new and improved Walk Mobile App.

Why I Walk…Christine’s Story

For Christine Read, the Walk to End Alzheimer’s gives “hope that one day no one else I love and care about will have to struggle with this awful disease.” This is Christine’s sixth year participating in the Lake County Walk to End Alzheimer’s. Christine walks on Saturday, October 2 in honor of her grandmother, who lived with Alzheimer’s disease.

“I lost my favorite person on this earth to it. Mourning the loss of someone while they are still living and breathing in front of you…It’s the most heartbreaking way to see someone live day in and day out.”

Christine reminds everyone that there is no cure for the disease and no way to prevent the inevitable after diagnosis. “The most important people in your life could one day look at you like you are a complete stranger and not want to be around you, trust you, etc. It can also be frustrating at times if you are a caretaker. No amount of love, care, or compassion will make them remember anything you want them to.”

Christine offers two tips for connecting with your loved one as they face the disease. If your loved one has a first language different from your own, Chrstine suggests learning it. “Eventually, they resort to that language and then it will become extremely difficult to communicate with them.” Secondly, Christine stresses the value of music to lift your loved one’s mood. “Music that they love will always trigger a happy place,” she shared. “They will even remember the lyrics. It’s heartwarming and gut wrenching at the same time. You’ll want to know why they can remember the words to a song, but not remember who you are to them.”

Having experienced the difficulty of losing her grandmother to Alzheimer’s disease, Christine encourages everyone to join her in pursuit of a cure. She says, “even $1 every month or year will go a long way.”

Join Christine at Walk to End Alzheimer’s this fall. Register at alzheimers-illinois.org/walk to raise valuable funds and awareness for Alzheimer’s care, support, and research.

Why I Walk… Airen’s Story

“Stay strong, you are not alone, and we will continue to fight for those who forget how to,” said Airen DeCarli. Airen is participating in the Lake County Walk to End Alzheimer’s on Saturday, October 2 in honor of her mother. For Airen, the Alzheimer’s Association signature fundraising event gives the opportunity to “walk closer to having a white flower, a survivor of this terrible disease. To get funding to run the tests we need so people no longer suffer and lose their memories. They worked so hard to make them.”

Christmas Eve 2020 through the glass at Airen’s mother’s care facility.

Airen’s mother was diagnosed with Stage 3 Dementia four years ago. “Due to the past year with the COVID-19 pandemic and her facility on lockdown for 13 and a half months, she has progressed to stage 6,” shared Airen. “There was minimal interaction during this time not only with her loved ones but also with facility members. Zoom calls depending on the day were usually confusing for her…Window visits were easier once allowed but my mom didn’t understand that she could see me and hear me through the headset, but couldn’t touch me because of the glass between us.

Early November 2020.

“It didn’t stop us though. In the cold months, I would wear layers and bring blankets and gloves and a hat while I showed her books with animal pictures. In July of 2020, I received a call saying my mom had tested positive for COVID-19, she wasn’t eating or drinking and they were taking her to the hospital. There were no Zoom calls at the hospital, only phone calls, to which mom didn’t understand anymore. She was scared and didn’t trust anyone.

“My mom pushed through…Even through the tough times, we made it work.”

Airen is grateful to now have easier access to her mother. “Visitations are in person now minus a few lockdowns every now and then for COVID-19 cases that arise. We go for walks around the pond at the facility complex, blow bubbles with bubble guns and she eats snacks that I know she loves. Sometimes a clarity moment pops through and she starts singing parts of a song that’s playing on my phone.”

Airen and her mom on the 4th of July, 2021.

Airen’s advice to other caregivers is to “be patient and know it’s okay that some days are better than others.” She wants those who haven’t faced Alzheimer’s or dementia to understand that “the caregivers are struggling just as badly as the ones with the disease. It doesn’t just affect the person with it, it affects all their loved ones, too.”

“We take one day at a time; some are better than others. Sometimes I cry after I leave her, sometimes I’m happy—it all depends on how the visits are. Each day is a roller coaster.”

Airen remains hopeful for a future without Alzheimer’s and dementia. “I will be strong and I will fight for her, for my family, and for all others going through it. I’m hoping together we can get that white flower.”

Join Airen in seeking an end to Alzheiemer’s and all other dementia by participating in your local Walk to End Alzheimer’s event. Register at alzheimers-illinois.org/walk.

At the 2020 Walk Promise Garden.

Why I Walk…Melody’s Story

Melody Mulvaney is participating in the Mattoon/Charleston Walk to End Alzheimer’s on Saturday, September 25 in honor of her mother. When asked what the event means to her, she replied: “It means potentially putting an end to Alzheimer’s by raising funds for a cure. It’s also a great feeling coming together with so many people that are like family. Everyone has a different story but are all there for the same reason.” She has been involved with Walk for eight years.

Melody encourages others to join her in raising funds and awareness for Alzheimer’s disease. She shared, “It truly is a horrible disease for the person living with it & for their family. They say Alzheimer’s is the long goodbye & I totally agree. You lose a little more of the person every day over time. As an Alzheimer’s daughter it is truly one of the hardest things that I’ve dealt with in my life. It robbed my mom of the things she enjoyed most in life! As a daughter/caregiver I felt completely helpless because I knew there was nothing I could do to make her better. I know that’s how [other] family members…feel as well.”

Melody’s mother lived with Alzheimer’s for about 10 years. Sadly, she passed away from the disease in June 2019. “I know in the beginning,” Melody said, “My mom was forgetting things but she still knew she was forgetting & it was very embarrassing for her. She thought everyone thought she was stupid. All we could do was try to reassure her that no one thought that. Do not argue with someone with dementia, it only makes them feel worse…Always remember, that’s the disease causing this, not your friend or loved one…They are still your friend or your loved one no matter what! We kept Mom at home as long as we could, but eventually, as hard as it was, we had to put her in a nursing home. She was on a regular Alzheimer’s floor & received very good care there.

“We were there with our Mom every step of the way. We never let her fight this battle alone….Her fight was our fight too!”

Melody and her two sisters visited their mother in her nursing home on a regular basis. They always went for holidays & their mother’s birthday. Melody was able to find support as a caregiver from her family and online community.

“Life with Alzheimer’s/dementia is a roller coaster ride, full of ups, downs, sideways & upside downs. If you are a caregiver, please get a support system. This disease is hard on the person that has it but also very hard for the family & the caregiver! Talk to someone,  have a backup so you can take a day away. I joined some Alzheimer’s support groups on Facebook & it helped a lot. As a plus I’ve made a lot of great friends (family really) through these pages. You just have to take it one day at a time & pray for the best!”

Join Melody in raising awareness and funds at Walk to End Alzheimer’s this fall. Find your Walk at alzheimers-illinois.org/walk.