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Madison Hardwick

Sandra Johnson Name: Madison Hardwick

Age: 20

Where do you call home? Waco, Texas!

Education/Career: My major is in Psychology and I will graduate in the spring from Austin Community College with my Associates of Arts and transfer to Tarleton to get my Bachelors. I want to be a Marriage and Family Therapist, because therapy saved my life this past year and I want to help others cope in healthy ways. I owe my improved mental health to therapy and it’s why I’ve come so far in my acceptance of my FA diagnosis.



Who do you live with? I live with my parents and younger brother & sister who are twins!

What is a typical day for you? I do my classes online in the morning and help watch my 4 month old niece all day. I do physical therapy twice a week, and do home exercises on the days I’m home. I hang out with family, read, and cuddle with my dogs!

 

 

How long have you known you are living with FA? I started showing symptoms my junior year of high school but didn’t think anything was wrong until the summer after I graduated. That’s when I realized something was wrong and I couldn’t blame it on being “clumsy” anymore. After two MRIs, neurologist appointments, specialists, blood work etc. I did genetic testing and was diagnosed with Friedreich’s ataxia in June 2020. Last month marked one year since my diagnosis.

Describe an adaptation and/or transition you have had to take due to living with FA. I am blessed to not need a mobility aid yet, but it’s in my near future (for safety & to maintain independence) I definitely have progressed in the past year since my diagnosis and usually hold onto someone now when I walk in public. I look for accessibility and avoid stairs at all costs.

What do you like to do to stay active and what type of exercises work for you to stay strong? I do Physical Therapy, Occupational Therapy, and Aquatic Therapy. PT is my only form of treatment and has prolonged my ability to walk and maintain my strength. I focus on coordination, balance, core, and strengthening. I also love to stretch and do yoga, and above all just KEEP MOVING.

Sandra Johnson Do you have any hobbies or special interests? I love to read and write. Journaling is therapeutic to me, and reading is my escape! I’m on my 23rd book of 2021! I also love to watch movies- I’m a hopeless romantic and watch my favorites over and over again! I also love fashion, I love to shop and wear cool clothes- it’s my favorite way to express myself!

What is a good trick to make daily life easier? I prioritize rest! Rest is equally as important as exercise. FA fatigue is real and we have to listen to our body! The biggest thing for me and making life easier is too not be so hard on myself. Living with a neuromuscular disease where your body is constantly fighting against you, give yourself grace for every win no matter how small.

When FA gets you down, what do you think/do to feel better? FA is really hard to deal with and gets me down often, but the therapist voice in my head reminds me that it’s impossible to process the hard stuff all the time. Healthy distractions are essential! I love to distract myself with a good book, a target trip, ice cream, hanging out with family, and playing with my dog!

What is one way living with FA has POSITIVELY affected your life? Of course I’m sad at all of the things has taken from me, but it has given me the greatest thing- gratitude for my health, family, and being alive every single day. It’s helped me use my voice to advocate for awareness of disabilities. It’s given me so much perspective on life and strengthened my faith in God in a way that never would have been possible without my FA diagnosis.

What is a favorite motivational quote of yours "There is strength in my struggle." I had a Tshirt fundraiser with that quote on the back and raised $1700 for FARA.

What is the best advice YOU could give a person who has been newly diagnosed with FA? What is piece of advice that someone with FA has given you that encourages and inspires you? The first person I talked to with FA was Frankie Perrazzola who has become my best friend. She is one of the best people I know. Her motivation, compassion, and vulnerability inspire me to keep going every single day. Everything she says encourages and inspires me, but something she said to me one day when I was dropping things, off-balanced, and just having an off day was, “It happens, and it’s going to keep happening.” Her realism and no sugar coating or fake positivity approach so early on my diagnosis shaped me and my own personal approach to FA. She’s positive and uplifting while also remaining so real.

What is piece of advice that someone with FA has given you that encourages and inspires you? Feel all of your emotions. Allow yourself to grieve the person you thought you were going to be and all the original plans for yourself. Take as long as you need, because this is a life-altering diagnosis. There’s no time for denial or pretending you don’t have it. It’s a journey of acceptance and your emotions are completely valid. Never stop doing the things you love, move your body every single day, and know that life is still worth living- and you can still have a fulfilling life. It just may be different than you originally pictured.

What's the first thing you want to do when a treatment/cure is found? My dream is to travel to Greece. There are a bunch of stairs which I’m unable to walk up and down, when a treatment is found… I want the full experience of Greece. The food, views, people, and not worrying about how I’m going to get around.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? That FA doesn’t define me. I’m so much more than my diagnosis. If FA was cured tomorrow, who would I be without FA. What can I say I’ve done with my life? I will get a degree, live my life and enjoy it- while remaining hopeful for a cure.



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