Maryann Gonzales Shares her Research Experience on her Health Condition

My name is Maryann Gonzalez and I am 56 years old. I am a part of Special Olympics Florida and have been for 48 years. I have done data entry and work with athlete leadership at special Olympics. I have participated in golf, bocce, bowling, volleyball, and softball. I am a health messenger and I am currently leading the 2022 AIC health challenge where we track the healthy activities that we do each day and how long we do it for. There are multiple teams that are broken down by divisions to track healthy activities such as exercise and healthy activity. Our team name is Shine as One.

My health story is for doctors and researchers. I have myotonia congenital which is a muscle disorder I was diagnosed with a long time ago. I was put on medication after my diagnosis which did not help my condition as much as it had helped other people. So I researched my condition online and found what had worked for other people with my same condition. As soon as I heard about my diagnosis, I started researching it and learned that one of the medications I was taking for seizures helped improve myotonia conditions and so I asked my doctor to be put back on that medications. I am now able to do a lot of the things I used to be able to do, but I am still not 100% and I have to be conscientious about what activities I participate in. I have to listen to my body to know when to stop doing an activity. A lot of people don’t understand that I know my own body the best and I know when to stop before it gets worse. You need to know when to rest and when to keep going. I think it is important to research conditions with doctors and be an advocate for your own health. With research, I was able to learn which activities were good for my body. I like researching new topics and finding new information. If I want to know symptoms of certain medications, I can research them and find ones without side effects that I don’t want. By researching medications, I can ask my doctors to put me on the ones that would best fit with my conditions – such as maintaining weight.

I graduated from college in Florida with a computer science degree. My first semester of college I had to take a seminar where you learn how to take classes in college. A teacher midway through said that I would not make it through that class. I took as a challenge that not only would I make it through the class but I would do better than just passed. It pushed me to show all my teachers in college that I wasn’t just a seat in class but I was there to learn. I graduated with honors and with an honors sorority group. I also received an outstanding computer award and the presidents award for my class. I really enjoyed my college experience and all of my teachers. They made accommodations for me, like sitting in the front of class so I can hear or getting enlarged text so that I can read better. I was so happy when I graduated college. I felt like I was on top of the world and it was a really great experience.

I am currently writing a book called “Don’t tell me I can’t”. The book is an autobiography about my life from when I was put in foster care until now. I don’t think you should tell people who have disabiltiies the word “can’t” because they will just work harder to prove you wrong. I want to show people that you can always get around the barriers that were set in front of you if you work to find those ways.  I am about a third of the way done with the book and when I am finished I am hoping to put it on amazon. One thing I wrote in the book was about my experience in elementary school when I fought for my right to be put in regular classes and not special education classes. I went to the principle because I wanted to be challenged and be in classes that would challenge me. I had a teacher in high school that told me “don’t underestimate yourself, you can do whatever you put your mind to”. I look back to that quote during hard times.

I am wondering how other people research their health conditions or thing in their life that they’re interested in?

6 thoughts on “Maryann Gonzales Shares her Research Experience on her Health Condition”

  1. Great story, Maryann! I agree with Sheri, you are an inspiration. I do lots of research to educate myself and my friends and family. I adopted a puppy in November, and I am constantly doing research on how I can improve my dog’s health, such as the best food brand to get or different mental exercises that I can give for him.

    When I got the second dose of the vaccine, I kept researching about the symptoms that I was experiencing to make sure it was common!

    Research is a powerful tool, and I am happy to hear that you have been using it to advocate for your own needs and advocating the importance for others to do the same. Because you are right, when you meet with your healthcare providers, it is a two way street! You can educate your doctors :-).

  2. I can only hope that this is seen by other people
    With developmental and intellectual disabilities. As you were motivated by your teachers; you are are a strong role model and motivator for individual health advocacy for all people with IDD! Keep up the good work!

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