Name: Mark Kuchmas
Age: 46 years old
Where do you call home? Baltimore, Maryland
What is your education [degree(s)]? I have an AA Degree in General Studies from the Community College of Baltimore County. I went to the University of Salisbury and my goal was in Business Management. When I went to Salisbury University, I did everything on my own. I got up, got my shower, got dressed, wheeled myself to classes or wherever I had to go, washed my clothes, folded them, and put them in the drawers and fixed my meals.
Who do you live with? I live with my mom. My older Brother, Billy, visits me and helps me if I need help.
What’s a typical day for you? I am blessed to have a caregiver from 9:00 a.m. to 7:00 p.m. every day. The first thing we do is my caregiver feeds me my breakfast in bed, then he gets me up for my shower, puts me back in bed, and dresses me. Then he gets me up in my electric wheelchair. We have the TV on, but I have trouble seeing it because my optic nerve is damaged. If I need help at any time, my caregiver tends to my needs. Then around 3:00 p.m. he gets me back into my bed, and around 4:15 the caregiver feeds me my dinner. The caregiver addresses my needs before he leaves, then me and my mom check my emails and messages from Facebook. Then at 8:30, my mom gives me my medicines and a snack and I go to sleep around 9:00 p.m.
How long have you known you are living with FA? When and how were you diagnosed? I was diagnosed with FA on July 18, 1991. I was at Johns Hopkins Hospital for my brother, Scott, who was there to be examined by Dr. Singer. Dr. Singer called Dr. Crawford in to examine him, and he asked Scott to walk down the hallway. I went out there with him and my parents. We went back into the room and waited for the two doctors to come back in after they conversed outside of the room. Dr. Crawford said, “We know exactly what it is. It is called Friedreich’s Ataxia, a form of muscular dystrophy.” He pointed to me and told us that I have it too. I was 13 years old and Scott was 15 years old.
Are there any others with FA in your family? As I stated above, my brother Scott had it. Scott passed away on December 2, 2017 at the age of 41. On February 21, 2017, my dad was diagnosed with ALS. He passed away 2 months after Scott on February 21, 2018, just one year after he was diagnosed. His mom, my grandmom, died from ALS too and passed away on my dad’s birthday, September 10, 1983.
Describe your transition from walking to walker/wheelchair. I walked as long as I could. I would hold onto someone’s arm and then I would push Scott, whose wheelchair I could hold onto and still walk. It was when I was 18 years old when I got my first manual wheelchair. I insisted on wheeling it myself. I used to wheel around the neighborhood every day when the weather was nice in the summertime. I met lots of nice people that were kind and helped me if I had a problem.
What do you like to do to stay active and what type of exercises work for you to stay strong? I don’t really exercise anymore. I do my daily routine of getting up and getting dressed and then get into my wheelchair. There are days, like if it is a holiday, that we go to the graveyard to honor my dad and Scott and lay flowers on their grave. Sometimes we may have a birthday party to go to. Occasionally, we have taken a ride, and have also gone to dinners to celebrate birthdays.
Do you have any hobbies or special interests? I like to watch football when the Eagles and the Ravens play other teams. I like to play Fantasy Football with my friends. I like to watch the Oriole games. However, it is on the TV, but I have trouble seeing it anymore. I also like to get on Facebook and check my messages and check my emails with my mom.
What is a good trick to make daily life easier? I don’t have any special tricks, but having faith in God helps me get through the day. Having a positive outlook would help, but sometimes it is hard to do that. My disease has progressed severely, where I cannot use my hands and I have trouble seeing. I have hearing aids that help me a little and my speech is bad. Sometimes it is hard for people to understand me and with the hearing, it may be hard for me to understand them. I also hear voices, but they are in control. I take medications that help me now and they don’t bother me at all anymore.
When FA gets you down, what do you think/do to feel better? I pray to God for help. I say the Our Father, the Hail Mary, and the Prayer to St. Francis. Sometimes I listen to music or a certain song. When I was able to see the TV, I would watch certain movies that inspired me, such as Rudy, Rocky II, IV And V, As Good As It Gets, and Castaway. I also used to read the Tim Tebow book “Through My Eyes” and the Tony Dunge book “Quiet Strength”.
What is one way living with FA has POSITIVELY affected your life? When I was 15 years old, I got to go to California to grant Scott’s wish to meet Kathy Ireland, the supermodel, through the Make-A-Wish Foundation. Then, when I was 17 years old, Make-A-Wish granted my wish to meet the cast of Friends. I was still walking, holding on to my brother’s wheelchair.
What is a favorite motivational quote of yours?
“No man is a failure who has friends.” It is from the movie “It’s A Wonderful Life”.
“Vision will ignite the fire of passion that fuels our commitment to do WHATEVER IT TAKES to achieve excellence” by Tony Dunge.
“HARD WORK beats TALENT when talent doesn’t WORK HARD” by Tim Tebow.
“We are all different.” by Stephen Hawking.
“The victim should have the right to end his life, if he wants. But I think it would be a great mistake. However bad life may seem, there is always something you can do, and succeed at. While there’s life, there is hope.” By Stephen Hawking.
John 3:16, a famous Bible verse, states, “For God so loved the world that he gave his only Son, that whoever believes in him should not perish but have eternal life.” It’s a foundational verse in Christianity, emphasizing God’s love and the way to salvation through faith in Jesus Christ.
Proverbs 3:5-6 says, “Trust in the Lord with all your heart and lean not on your own understanding: in all your ways submit to Him, and He will make your paths straight.
Mark 10:27 says, “With man it is impossible, but not with God. For with God all things are possible.” This verse is part of Jesus’ discussion with his disciples about wealth and salvation, where he emphasizes that God’s power transcends human limitations.
Joshua 1:9. “Be strong & courageous. Do not be afraid. Do not be discouraged for the Lord your God will be with you wherever you go.”
I have a lot of special quotes, but these are some to share.
What is a piece of advice that someone with FA has given you that encourages and inspires you? My Brother, Scott, had inspired me by hanging in there at Towson University to get his BA degree in Mass Communications/Film. Meeting and knowing Kathy Ireland has also inspired me.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? I would tell them to never give up and fight through the challenges of the disease. If you fall, get back up. Don’t let anything stop you from doing what you want to do.
What is the first thing you want to do when a cure/treatment to FA is found? I would exercise so I can build up my muscles. I would go on trips. I would get a job.
“I have FA but FA doesn’t have me.” What does this statement mean to you? I fight through the disease. I don’t let it stop me from doing what I want to do.
How do you live your life in the face of adversity?. I have faith in God to get me through it all. I say prayers.
Tell us a little more about you…. I have gone to the David Letterman Show three times with family and friends and one of those times Kathy Ireland was on it. I went to Philadelphia with Fr. Mike, my guidance counselor from my high school, Archbishop Curley, to see the Eagles vs. the Giants. The Eagles were my favorite team at that time and the Giants were his favorite team. I used to go to lunches and dinners with him and Mrs. Davis, who worked with Fr. Mike. I also go to lunch or dinner with family and friends.
I worked for the Baltimore Orioles from 2000-2002 in Ticket and Fan Services.
I went to the Super Bowl XXXIX with my friend, Greg, when the Eagles played against the Patriots in 2005. My Eagles lost, but at least I was there to see them play. I went to the Super Bowl XLVI with Scott, our Friends, Tony and Greg, when the Giants played against the Patriots in 2012. Scott’s favorite team, the Giants, won the game.
Interview By
Morgan Talevich