The Walk to End Alzheimer’s – One Family’s Fight

By DARRIN HEATHERLY 

The Walk to End Alzheimer’s, held annually by 600 communities nationwide, is the largest event to raise awareness and money for research, care and support for victims of Alzheimer’s and their families. Hispanics are 1.5 times more likely to fall victim to the disease. After the loss of a close family member to Alzheimer’s, Ivonne Lara and Rocio Mandujano began their journey to find a cure.

ATLANTA – Every 67 seconds in the United States, someone develops Alzheimer’s disease. The sixth leading cause of death in America is the only disease within the top 10 causes of death without a cure. Five million Americans battle the disease that does not just affect its victims, but also the 15.7 million caregivers who must sacrifice time, patience and energy in hopes of being remembered or saving a life.

For cousins Ivonne Lara, 23, and Rocio Mandujano, 21, these statistics became their unfortunate reality. Their grandmother, Maria Concepcion Rodriguez Alvarado, began experiencing significant symptoms of Alzheimer’s disease.

“It went from ‘Where are the keys’ to ‘I don’t know how to walk anymore,’” Lara said.

Alzheimer’s disease, a progressive, irreversible neurological disorder, strikes most of its victims aged 65 or older but can strike in the 40s and 50s. Victims to the disease experience symptoms such as gradual memory loss, disorientation, impairment of judgment, personality change, difficulty in learning and loss of language skills.

Lara’s family came together and realized that Alvarado’s struggles were not a result of aging, but a serious medical condition that needed to be handled properly.

“I grew up with my grandmother,” Lara said. “She raised me. She is a very lovable person. Anyone she met loved her.”

Mandujano and Lara spent hours providing care for their grandmother. However, Alvarado began to lose touch with her family and caregivers, forgetting their names or treating them as somebody from her past.

“My grandmother would think we were her daughters,” Mandujano said. “She thought my grandfather was her dad.”

Alzheimer’s Disease – A 24-Hour Job

Alzheimer’s victims require assistance throughout all stages of the disease. Early within the diagnosis, patients need help adjusting to the future. Both the victim and the care-giver will experience significant life changes. In 2014, 15.7 million American caregivers provided an estimated 17.9 billion hours of unpaid care valued at $217.7 billion.

“Taking care of our grandma, going to school and working,” Mandujano said. “That became our life.”

When Alvarado deemed her granddaughters as other family members or strangers, Lara and Mandujano would have to assume the character.

“Sometimes you have to play along with the role,” Lara said. “You have to have patience because there are a lot of people who don’t have patience. She would become stubborn or angry, but you would need to work with her.”

Alvarado became more upset during the early evening, experiencing a setback of Alzheimer’s disease called sundown syndrome. Fading light became a trigger that worsened her symptoms.

“My grandma would get really angry about the same time the kids would get out of school,” Mandujano said. “She would start screaming at everyone or would want to leave the house.”

When their grandmother insisted on leaving the house, Lara and Mandujano would drive her around the neighborhood and return her home to calm her down. The sedative five-minute drive would become Alvarado’s soothing get-away but an illusion to the reality that is Alzheimer’s disease.

In late 2013, Alvarado began experiencing very severe declines in her health. In March of 2014, at the age of 72, Maria Concepcion Rodriguez Alvarado lost her battle to Alzheimer’s disease.

“The last time we spoke, I asked her who I was,” Lara said. “She looked me in the eye and said ‘You are Ivonne Lara.’ She hadn’t remembered my name in so long. It was my most significant memory of her.”

The Hispanic Killer

A month after the passing of their grandmother, Lara and Mandujano began fundraising for a cure in April of 2014. The two started Team Conchitas in Atlanta’s chapter of The Walk to End Alzheimer’s. The two shined a very bright light on who the disease affects the most.

“Our main focus was to bring attention of Alzheimer’s disease to the Hispanic community,” said Lara.

The Alzheimer’s Association reports that Hispanics are about 1.5 more times more likely to develop Alzheimer’s disease than non-Hispanic whites.

This may be attributed to vascular diseases such as diabetes, high blood pressure and high cholesterol usually within the Hispanic or African-American diet.

“My grandma and her twin are a great example of this,” said Lara. “They both suffered from Alzheimer’s and diabetes, but my grandma refused to change her diet while her twin ate healthier so my grandmother suffered worst.”

Lara and Mandujano were discovering that other Hispanic families close to them were also experiencing a family member suffering with Alzheimer’s from conversations at church or through school.

The Alzheimer’s Disease Facts and Figures report in 2010 predicts that the number of Hispanic elders with Alzheimer’s and related dementias could increase more than six-fold, from fewer than 200,000 in 2010 to as many as 1.3 million by 2050.

Lara and Mandujano’s Public Impact

Since beginning their campaign in 2014, Lara and her team have made significant strides in publicity for the program. Lara was featured in the July 2015 issue of People En Español Magazine.

The two were able to garner the local masses in a radio interview with Atlanta’s Cumulus Media in 2015, which airs on several of Atlanta’s local radio stations. This year, Lara is working with El Patron 105.3, the biggest Spanish speaking radio station in the city of Atlanta.

Lara and Mandujano were featured in a national Spanish advertisement for the My Brain Campaign, a movement created by the Alzheimer’s Association of America. The creators of the movement are the directors behind the movie “Still Alice.”

A Walk of Vindication

This month, Lara and Mandujano begin planning for the Walk to End Alzheimer’s in September.

The Walk to End Alzheimer’s is held annually in more than 600 communities over the United States. Starting in 1989 as the Memory Walk, $149,000 was raised from 1,249 participants. In 1993, just four years later, the Memory Walk became a nationwide event raising $4.5 million at 167 locations. In 2015, the fundraising campaign has nearly 50,000 teams and 600 walks countrywide.

Leila Rodrigo, 38, is a member of the Duluth chapter of the Walk to End Alzheimer’s. Last year, she experienced the growth of the program from 100 participants in 2014 to nearly 400 in 2015.

“Truly our work is becoming more public and bigger than I could imagine,” Rodrigo said. “It may be due to all the celebrities getting involved, the movies and the publicity.”

Rodrigo is referring to celebrities such as professional skateboarder, Tony Hawk, whose grandmother is a victim from Alzheimer’s disease. Actor Seth Rogan has started the movement “Kick Alz in the Balls” alongside his wife. Together they created a documentary titled “This is Alzheimer’s” following the life of several victims including a 35 year-old man.

Lara and Mandujano’s chapter has grown increasingly since their first walk in 2014. The first walk took place at Central Park in Atlantic Station. In 2015, the group rented out the lot where Cirque du Soleil takes place annually. The streets were filled with purple and gold. Children, naïve and unaware, laugh and run for a disease they cannot yet pronounce.

Parents are gathered alongside bright young supporters. One thing is clear; the runners need a bigger space.

“We are currently looking for a new, bigger area because our cause has gotten a lot more media attention than before,” Lara said.

Lara and Mandujano were the first Spanish speaking members of their committee within the Walk to End Alzheimer’s. Due to their involvement, they were able to convince most of their family to begin fundraising for the first time in their lives.

“Most of my family is coming from Mexico,” Lara said. “So this is their first time really being involved with anything like this. The first year we raised about $2000 as our family alone and we want to keep raising the bar by $2000 more each year.”

Eliminating Alzheimer’s Once and For All

The Walk to End Alzheimer’s continues to grow in numbers and supporters have raised nearly millions of dollars to vindicate the lives of their loved ones. The Walk to End Alzheimer’s was born out of a selfish love and aspiration to weather the curse this wretched disease places upon its millions of victims. Those who sacrifice precious time do so to cherish the thousands of memories their loved ones can no longer have.

“She’s not alone,” Lara said. “Everything that we are doing in the moment is for her. I hope that she is looking down and seeing us. I hope that she is proud.”

A cause often whispered about now has a pounding voice that echoes across the world. The work that Mandujano and Lara continue to do is in the memory of their grandmother, Maria Concepcion Rodriguez Alvarado.

“I miss her,” Mandujano said. “Everything I have done with the Alzheimer’s Association is in memory of my grandmother. This was a positive way for me to grieve. I’m thankful for the committee for helping me get through this process and everything I continue to do will be for her.”

Visit www.alz.org/Georgia to learn the warning signs and symptoms of Alzheimer’s disease. Call 800–272–3900 or email lucretia.smith@alz.org for a 24 hour helpline in assisting with Alzheimer’s disease. Donations to Team Conchitas can be submitted here.

 

 

 

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