My Reasons to Care

In this entry, 17-year old Aliya Farmanali shares her experience with Alzheimer's disease and her motivation to get involved as a chapter president of AFA Teens in Las Vegas, NV. 

No one in my family has Alzheimer’s disease. That in itself is such a blessing; yet to some, it, therefore, may seem incongruous that I am the president of the AFA Teens Chapter at my school and the Alzheimer’s Awareness Club associated with it. I am sure people wonder, “Why are you involved with the Alzheimer’s cause if you have not been personally affected by the disease?”

But I have. Some of my grandparents’ closest friends have battled the disease, either as individuals diagnosed with Alzheimer’s or as caregivers supporting their loved ones. My parents run a small residential home for individuals with Alzheimer’s disease, and I treasure the companionship of the residents I meet there. I have friends whose families have dealt with Alzheimer’s disease, or who are curious to learn more about the disease itself. These are some of my connections to Alzheimer’s disease, and they stimulate me every day to continue to raise awareness of the disease and visualize a world in which there is a cure for Alzheimer’s there.

Every day I am reminded of why I joined the cause. Looking through my emails, I find my inbox filled with emails concerning Alzheimer’s disease (ongoing research, proposed legislation, and caregiving issues, to name a few). I receive magazines in the mail that discuss various aspects of Alzheimer’s disease, and I keep textbooks and novels on my bookshelf that illustrate the effects of the disease through detailed pictures of the brain, sweeping descriptions of potential causes and prevalent symptoms, and heartrending prose in a “third-person limited” point of view that offers a striking view on what life and thoughts might be like for a person with Alzheimer’s disease.

Perhaps the most poignant reminder for me is that more and more frequently, characters in television shows and books are depicted with Alzheimer’s disease. That Alzheimer’s disease is no longer being discussed just in documentaries and nonfiction books, but in fictional works, disturbs me. It disturbs me because its inclusion in storylines emphasizes just how prevalent and how brutal Alzheimer’s disease is. There is, however, a more positive side to this situation as well. The fact that Alzheimer’s is showing up in visual and literary works of many genres illustrates an increased awareness of the disease in the world today. Moreover, I find it inspiring that in some works of science fiction, the future holds a cure for Alzheimer’s disease. And even when the comments regarding Alzheimer’s disease are brief within the plotlines, they focus people’s attention on the disease.

Like cancer and diabetes, Alzheimer’s disease affects millions around the globe. Unlike these two diseases, right now, Alzheimer’s can neither be prevented nor cured. I raise awareness for Alzheimer’s disease because right now, it is my way of being a part of the solution to this problem.

A Fundraiser for Grandma

Paige McCoy, a high school senior from Warwick, R.I., held a fundraiser for Alzheimer’s disease in honor of her grandmother who passed away in May 2013 after her struggle with the disease. In a previous blog entry posted on January 15, 2014, Paige reflected on her relationship with her grandmother. In this installment, Paige reflects on her fundraising event and its impact.

When choosing the topic of my senior project, I knew that choosing Alzheimer’s disease would allow me to honor my grandmother whom I was very close with. I decided to add a second, voluntary aspect to my project by hosting an awareness event and fundraiser that would benefit the Alzheimer’s Foundation of America (AFA).

The event took place on the evening of October 26, 2013 at an armory in East Greenwich, R.I. The hall that I rented was very large, and the venue supplied many tables and chairs at no cost, which was absolutely outstanding. The room also had a stage where I could make a short speech and announce raffle winners.

It was important to me that the event included personal touches that my grandmother would love, so I incorporated her favorite color. Using a lavender and white color scheme for the invitations and the tablecloths allowed my grandmother’s presence to be felt.

 I charged an admission fee of $10 for adults and $5s for kids ages five to 13; children four and younger were free. Through the support of stores and businesses that made generous donations,  the event had had a wide variety of food, including  finger sandwiches, calzones, party pizza, cookies and brownies, and many types of beverages such as juice pouches, waters, coffee and soda.. I was also fortunate enough to receive 27 gift card and basket donations for raffle prizes.

Prior to my event, I decided that I wouldn’t prepare anything word for word to say during my speech because I wanted it to come from the heart. I started to tear up while I was talking about my grandma, but I also dedicated my speech to all of the other people with Alzheimer’s disease and their families. I mentioned some statistics about Alzheimer’s disease and talked about what AFA does to help people affected by the disease. I thanked my family, my friends, etc. At the end of the night, I made one more speech: I announced that we had raised $1,100 for AFA. And with this news, there was a standing ovation.

Growing Up With My Grandmother

Paige McCoy, a 17-year-old high school senior from Warwick, R.I., lost her grandmother, Frances Medeiros, to Alzheimer’s disease last May. In this blog entry, Paige reflects on her relationship with her grandmother and how she continues to feel her grandmother’s presence in her life.

To me, there is no bond that is greater than the one between a grandchild and his or her grandparents. In my family, the word grandparents is an understatement; I might as well call them parents because of the love, support and encouragement that they’ve given me in the last 17 years.

My relationship with my grandmother was a very special one. There is not one day that goes by that I don’t start my day with a glass of orange juice—a habit that she started when I was seven years old. She was everything that a grandmother should be. She came to every birthday party, my first communion, the father and daughter dances, and every dance recital.  She always had to be the one to hand her grandchildren their birthday and Christmas presents. She would swipe it right from my papa’s hand and say, “Here you go, honey bun!” Nothing could beat the overall positive vibe and warm embrace that came from my grandma.

She taught me many things in life. She taught me about the importance of religion. She taught me to have class. And she also taught me little things in life, like how to fold clothes. My grandma was an educational inspiration, having been the valedictorian of the first graduating class at Salve Regina University. My mother and uncles always tell me how great she was with words, that she could define any word she was asked about with a brief definition and always carried a small dictionary with her. I still keep that tiny dictionary in my jewelry box.  

Since my grandma passed away, there has not been one night where I don’t pray to her. I tell her how my day went, about a big test I have coming up, or about how stressed out I am about work, school, and college applications. I truly believe that she can hear me. One night, about three months after she passed away, I talked to her about my papa. I told her how depressed he was, and how seeing him so sad made me want to cry. I asked her to help him feel better.

A few days later, I was sitting at the kitchen table with my papa and my mom. All of a sudden, my papa’s face lit up, and he said to my mother, “I almost forgot to tell you, I had a dream about mama two nights ago!” He explained the dream, and how beautiful he thought she looked when all of a sudden it hit me: my grandma had heard me. That was such an emotional moment. I cried tears of joy, sadness and shock. I felt like I had talked to my grandma and I would never trade that feeling for anything in this world. I didn’t tell any of my family what happened, because I wanted it to be something that stayed between my grandma and me

I refuse to say goodbye. No distance or amount of time can break the bond between a granddaughter and her grandmother. Someone who nurtured you from the start does not just “go away.” I just had to change my perspective. Instead of driving to her house, now I just put my hands together and speak—and she’s all ears.