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Yolonda SimonMy name is Yolonda Simon and I live in Carbondale, Illinois - home of Southern Illinois University (SIU). I have two adult daughters, a son-in-law and a beautiful eighteen-month-old granddaughter, Mariana Joy. I am a retired educator, love to talk, learn, and to meet new people. My favorite pastimes are reading, walking (preferably outdoors), and genealogy. One of my goals is to place grave markers at grave sites of ancestors that have gone on but have none. I realize that I am here because they once were. I also volunteer for an after-school program called I Can Read!, which helps fourth and fifth graders enhance their reading, writing and presentation skills. I am also very active in my church – teaching, singing and being a part of our health ministry.

What led to your involvement with the Alzheimer's Association?

When my mother was diagnosed with Alzheimer’s, my brother and I were her main caregivers. We learned "on the job," but since we loved our mother, it was indeed a labor of love. I am from a family of twelve and my brothers, sisters, as well as my mother’s brothers (and their wives), were super supportive. I was still working at the time and spent weekends giving respite to my brother who was my mom’s caregiver on a daily basis. During the summer I spent weeks at a time giving support. Our saving grace was the book, The 36 Hour Day. We read it and used it to encourage each other as we encountered each stage of the disease. After my mother passed, her brother was diagnosed with Alzheimer’s before his death, and my oldest sister is currently living with the disease. Experiencing this pain as a result of this disease has motivated me to become active in informing others and doing all that I can to help other families better understand what we can do to promote a cure as we care for others.

What duties do you have as an AACR?

As an Alzheimer’s Community Educator, I share information at health fairs and speak to different groups in the community about understanding Alzheimer’s and dementia. If you give me a moment, I will share! Being informed about Alzheimer’s, in my opinion, is very important.

Why did you choose to become an AACR?

When I first volunteered to help with the Alzheimer’s Association, I was not aware that becoming an Alzheimer’s Community Educator was even an option. I love to learn, but I thought that I would mostly be filing papers and helping do office work to prepare for our local Education and Outreach Manager to go out and speak to others. In the meantime, (I thought) I would be reading and learning more about the disease. When I attended the first meeting and found that I would be able to actually share with others, my heart leaped for joy! I desire to help other families/caregivers to be better educated on ways to help their loved ones with Alzheimer’s. I really think that I experienced all that I have with my family so that I would be able to give back in this way as an educator, and I am honored to do so.

Have you had any special volunteer experiences?

When I went to my first health fair, I was so nervous. I thought that I had jumped into something that was so over my head. Very soon after, a man stopped by and he told me about his mother. He and his brothers were struggling to care for her. I listened and then told him about some of my experiences. He moved to the side of the table and asked me if he could give me a hug. He said that I was the first person that he had talked to that really understood what he was experiencing. We hugged, and a few minutes later he came back with his wife, telling her that he had met me, and wanted her to hear my story. She, too, said that they were experiencing those same things. I gave them the website and the 800 number, assuring them that help and hope were on the other side of both. For the first time, I felt like my mother’s experience had served a purpose. Her story helped me connect to someone else. That felt good!

Why do you think others should join the AACR program?

I think that others should join the program to become informed so they can help others to become informed. Everyone can teach someone else about Alzheimer’s. One does not, however, have to be an educator or even run tables at health fairs. If you like to walk, volunteer to participate in a Walk to End Alzheimer's. One can volunteer to be a part of a health ministry at the church or organization in which you are involved, and then become the person to share about this topic. Lastly, one can volunteer to be a part of a TrialMatch. When in doubt about how you can help, visit your local Alzheimer’s office and speak to one of the people there. I think there is something for EVERYONE to do so that we can find a cure for Alzheimer’s. That has to be our collective goal!

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