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David (Dave) Arnold

Sandra Johnson Name: David (Dave) Arnold

Age: 36

Where do you call home? Grand Rapids, Michigan

Education/Career: Before knowing about my FA I aspired to be a Physical Therapist (PT or DPT) or a Physician Assistant (PA). The disease progressed steadily during undergrad but I was still able to attain a Bachelor’s degree in Clinical Exercise Science with a minor in Public Health. Many of my classes were tailored towards prerequisites of graduate programs in PT or PA. During that time I was also able to become certified as an Emergency Medical Technician (EMT). I worked very hard achieving good grades, and building my academic resume for grad school. Unfortunately, two hours before taking my last exam as an undergraduate student I received a phone call from my Neurologist that delivered some devastating news. “Your genetic test is consistent with a diagnoses of Friedreich’s Ataxia (FA)”, he said. I don’t even remember what else was said. I couldn’t breathe for about 30 seconds. I laid in my bed after the call and didn’t want to move. My physician had previously discussed FA with me. I researched it, knew exactly what it was, and what it did. I was just so certain that I did not have it. I was going to skip my exam as it didn’t seem to matter much. I remember thinking “why, I did all of the things I was supposed to do”? Everything I worked for and geared towards would become abilities that I would most likely lose in the near future. It would be really hard to successfully be a PT or PA when your own motor functions are being depleted. Not saying it can’t be done, but with FA progression it may be much more trouble than it’s worth (at least from my perspective). I was in rough shape. For me it was a pivotal point. Stay in bed and quit, or go take the exam and finish what I’d been working hard to attain for four years. Even though I did not want to, something drove me to go take my exam and finish my Bachelor’s degree. My education gave me a foundation for healthcare from the provider point of view and I wanted to stay in that field. I switched gears and pursued more administrative roles. After all I did end up going to graduate school and completing my Master’s in Healthcare Administration degree. Today, I have a good job and like what I do. Which is still in the field that I wanted to be in. I may seek further education one day as I do enjoy it, even though it can be very challenging at times. I am certain though that if I would’ve quit and stayed in bed that particular day, the after accomplishments would be non-existent.

Who do you live with? I live with my wife, 5 year old son and 2 year old daughter.

What is a typical day for you? I am very fortunate to still be able to live very independently. My work as well as my wife’s have been flexible to our family’s specific needs, which makes a world of difference. I get up around 6am. I work remotely from home (which I was doing before the pandemic) so it makes life much easier. I drink coffee and work via computer for about an hour and a half. Then I get my son up around 8am, get him ready, and to school by 9am. I return, continue working and do my best to be all finished by 3pm when it’s time to pick my son up from school. I try to make dinner a few times per week, and help keep up with daily chores (garbage, dishes, lawn mowing, bathing the kids, shopping, household cleaning, etc). Getting to the gym at least three times or more per week is something I always aim for. After some family time, the kid’s bedtime routine (reading books & pre-bed wrestling), I get to bed around 11pm. Then I get up and repeat it all over again.

 

 

How long have you known you are living with FA? I was diagnosed officially in May-2012. I was misdiagnosed pre 2012 like many other FAers. Certain signs and symptoms were becoming visible before that time.

Sandra Johnson Are there any others with FA in your family? My oldest brother, who is 7 years older has FA. My brother that is 4 years older is not affected.

Describe your transition from walking to walker/wheelchair. Right now I use a cane most of the time in public places, or somewhere where I have to walk a long distance (75% of the cane use is for me and 25% is so the general public is aware that I am disabled and will leave me alone). Only fellow FAers will understand the previous part which is in parenthesis.

What do you like to do to stay active and what type of exercises work for you to stay strong? I very much enjoy exercising and staying active. I always intend to go to the gym at least 3x per week. I also have a heavy bag for boxing at home that provides a fun high intensity workout. I do both cardio and resistance training. My cardio mainly comes from a basic elliptical and some rowing. My resistance routine is somewhat all over the place lately, but I try to hit the main muscle groups. Over the past year I emphasize my core muscles as it seems to help make me steadier. Resistance includes both machines and free-weights, but as FA progresses I have to be more careful with the free-weights.

Do you have any hobbies or special interests? Exercising, hunting, fishing, camping, exploring nature on my side-by-side, cooking, trying new foods, and doing everything that I can with family and friends.

What is a good trick to make daily life easier? Light colored shoes opposed to dark. My peripheral vision seems to pick-up light colored shoes better against certain backgrounds (green grass, dark pavement, wood floors, and unlit areas). This may help with walking, transferring, or many other feet/leg movements. FAers rely on their vision often to know where their feet are in space. Another helpful trick is 77 oversized pens if you have hand tremors like me. Type “tremor pens” into amazon search if interested. I also use travel cups for most things when drinking.

When FA gets you down, what do you think/do to feel better? Exercising and spending time with my family are things that I do often to keep me sane. Sometimes just sitting on my deck with my dog while enjoying coffee, beer, etc, helps me relax and forget about FA as well.

What is one way living with FA has POSITIVELY affected your life? My empathy for others and trying to understand their perspective is a skill that I feel has greatly improved over the years since personally dealing with FA. It also reminds me to use time wisely and enjoy things. FAers very often become conditioned to live in fear of almost everything we do (especially outside of our home). I do my best to keep the psychological boundaries from over taking me.

What is a favorite motivational quote of yours? I draw inspiration from many quotes belonging to numerous outstanding individuals, but two of my favorites include: "Don’t give up, don’t ever give up." -Jimmy Valvano. "You can’t change the cards that you are dealt, just how you play the hand” –Randy Pausch (The Last Lecture). Simple messages yet it can be very hard to maintain the fortitude required to uphold, when going through trying situations. Especially in circumstances such as ours.

What is a piece of advice that someone with FA has given you that encourages and inspires you? Even if you don’t know which direction to take, keep moving. –Kyle Bryant

Sandra Johnson What is the best advice YOU could give a person who has been newly diagnosed with FA? Adaptability will be paramount for your future. Everyone has to learn to adapt, but unfortunately for FAers the changes move considerably faster. Utilize FARA and speak to other FAers. Some may be able to give you advice, while some may need your advice. Knowing you are not alone and there are people like you can definitely help with the stress/anxiety/questions that come along with this disease. I have met, spoken with and been inspired by some truly great people because of FA.

What is the first thing you want to do when a cure/treatment is found? Play sports again (especially ice hockey with my kids). I played many different sports growing up and throughout high school. I really miss physically competing for myself but I wish I could teach my kids the fundamental knowledge I have by showing them. My mind knows the way but unfortunately my body can no longer do those things.

"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? One word comes to mind, “perseverance”. This is an overarching term that describes me and the many aspects involved, when I think of how I deal with FA. Every time I fall (physically & mentally) I do whatever I have to in order to get back up. I may complete tasks different than “normal”, but I complete them. Without a doubt I look different when at the park with my kids than the other dad’s (walk, talk, movement in general), but I am still at the park with my kids. I hope that my children never have to deal with anything like this themselves, but they will learn from me and how I react to the adversity. I want them to learn how to persevere and overcome obstacles because I helped set a good example for them. As our friend, mentor, and fellow FA’er Kyle Bryant once said; “stop dwelling on what you can’t do and start focusing on what you can do”. Those words are powerful and I like to keep that mindset every day. My attitude definitely has a significant impact on me taking control of my FA.

Tell us a little more about you… I use a walker to get around long distances, I have a normal life, even though I'm facing great difficulties. I try to keep my mind healthy to have my body stable, I fight to make my dreams come true and I'm not afraid of new challenges. If I'm going to live, I'll live it in an adapted way, of course, until the day I can. Fear and regret are not my motto.


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