Category Archives: Stories

Tendercare

A special thanks goes out to Tendercare for being a Title Sponsor again at our 2017 Bowling Extravaganza! Not only did they sponsor the event and have a team of bowlers come out, but Leslie Deitchman, President of Tendercare, was a sport and experienced the entire event from a wheelchair!

Since Leslie interacts with patients in wheelchairs, she thought she had a good idea of what it would be like to be reliant on one. To her surprise, it was much harder than she thought. We had the chair ready for her when she parked, and she didn’t get out of it until we wheeled her out to the car when it was over. It was a manual chair that she had to maneuver on her own and bowl from, and she said it was much more difficult to steer than expected.

Leslie had to rely on her husband Jim and others to help her with many things. She said Jim helped her get her food, but then sat her drink down where she couldn’t reach it or get her wheelchair over to it. Simple things took more planning and assistance. Sitting in a chair while others are standing posed its own issues. She felt like people were talking down to her and constantly had to be looking up. She said not only were her arms and shoulders hurting by the end of the day, but her neck was sore from looking up to people all day.

By the end of the day, Leslie reflected on her experience encouraging anyone who has the opportunity to do something like this should. Leslie said “I take care of lots of patients in wheelchairs. I will now sit down to talk to them at eye level. It was interesting and it really helped me relate to people in wheelchairs.”

Leslie who was working as an RN and Jim started Tendercare in 1994 after recognizing a need in the health care industry for quality home healthcare. As the President and Administrator, Leslie is very involved in every aspect of the operation of the business. She has 14 years experience in critical care areas, including adult and pediatric intensive care, open heart, coronary care, and emergency room nursing. Leslie had also worked part time doing skilled home care nursing visits prior to starting Tendercare. She realized that Indianapolis and the surrounding areas had an unfilled opportunity for an agency to provide better quality, service oriented home care.

Today, Tendercare provides personalized in-home care delivered by experienced, competent, and supportive nursing professionals, skilled therapists, and caring home health aides. They provide only the best in pediatric and adult home care, ensuring that every person is treated with the utmost respect so that they can live the best life possible.

Dreaming Big

In an effort to spread awareness of Muscular Dystrophy (MD) in September, I got the pleasure of interviewing various people who live daily with MD as well as caregivers who are gladly sacrificing their careers and hobbies to care for their loved ones. Sharing their stories not just for the sake of awareness, but also to encourage others with MD that need to hear…..

…….stories of love.

……..stories of perseverance.

……….stories of service.

………..stories of perspective.

………….stories of accomplishments.

…………..stories of strength.

It’s an understatement to say MD is a tough disease to live with.

  • It can be radically different in the degree and severity of muscles it impacts in different individuals making the unknown incredibly scary.
  • The loss of mobility and reliance on people and assistive devices is truly hard to understand unless you know someone personally and get a glimpse into a full a day and the strength it takes to do simple things like get out of bed and get dressed.
  • Since it is a rare disease, progress is slow at best towards a cure and even advances in care.

Yet there are countless people and families who are stronger than me and choose to focus on the great things in their lives. They see a challenge, and persevere until they find a way to overcome it. Families who don’t complain or feel sorry for themselves because of the disease, but instead trust their faith and God that this is the life they have been given, and they will live it. People who are selfless and despite the enormous hardships they face, they are still more concerned about other people who have cancer or live in 3rd world countries.

It’s been an eye opening and encouraging month. Encouraging because when you spend time around people that choose to live life to it’s fullest, it impacts your daily outlook. When you listen to others dreams, you tend to dream more. When you see others deep love and care for one another, you are inspired to love and care for others more deeply.

For those of us with healthy bodies and fully functioning arms and legs, we can’t really grasp what it’s like to be dependent on others. Nonetheless, I do have a better understanding than I did 30 days ago and I hope you do too.

For every story you see of a person who is not letting MD define them or stop them, there is someone else who is confined to their home and has lost hope. Many are homes with a single parent because their spouse couldn’t take the emotional and physical challenges. The remaining parent has had to quit their job to take care of their child for their rest of their lives. Financially, they are in poverty, not even having simple things we take for granted like a home computer and internet. It is our hope and desire that with more awareness of MD and the support MDFF offers, we will be able to reach more of these families in the coming year. Let them know that there is hope. Connect them with some of the families that have inspired us. Provide them a community, a family and a network of care and support. Your financial support enables us to do that.   Thank you for following us, and be looking for ways you can get involved. Our dreams are bigger than they ever have been, and we know where there is a will, there is a way!

A New Perspective

It’s been an eye opening and encouraging month as we share stories about Hoosier families living with MD as a part of spreading MD Awareness. For those of us with healthy bodies and fully functioning arms and legs, we can’t really grasp what it’s like to rely on a wheelchair, mobility devices and other people to do simple things for us. To be dependent on others.

At our Bowling Event earlier this month we gave two people an opportunity to get a small glimpse into what its like.  Leslie Deitchman from Tendercare and Jacque Oppelt from DOZ both got straight out of their cars into a wheelchair, and stayed in the wheelchairs until the event was over and we escorted them back out to their cars.  We’ll be sharing more about Leslie soon, but here are some highlight’s from Jacque’s experience.

 

 

Called to Care

Like many moms, Glenna Fitzpatrick wears many hats. She has worked in the public school system for 21 years with students who have severe behavioral issues. She is the only one in her home that is employed, so she is the sole financial provider. She is also a single mom with 2 adult handicapped children living at home for whom she is the primary caregiver. She adopted sisters 20 years ago after being a foster mom to them. April was 3, and her older sister Abby was 8 when she adopted them. Twelve years ago, she also took guardianship of another girl she considers a daughter named Grace. Grace and April are still living at home and both have special needs.

Glenna loves her girls deeply and stepped into motherhood knowing that raising her daughters would come with extra emotional and medical care beyond the average parenting. She chose a life of sacrifice that in turn has given her much love and joy in return. When April was around 6 years old, Glenna learned from doctors that she had Duchenne Muscular Dystrophy (MD). Duchenne is form of MD that is not very common in girls, and a disease that would likely require her to be in a wheelchair by the time she was a teenager. While Glenna did not know April had MD when she adopted her, she did know that she had some physical and developmental issues and says it would not have impacted her decision to adopt April.

Both times I’ve spoken with Glenna she seems really laid back, especially considering she works a high stress job and has more than your normal challenges to conquer when she arrives home each day. Glenna says although today she is a “glass is half full person” she hasn’t always been. Years ago she began reading and attending training for work that helped her focus on the positive.   She says this change in perspective along wit her faith has significantly impacted her outlook.

Glenna says the hardest part of caring for April is when she asks “why can’t I be normal.” Glenna reminds her that “God made you this way, you are special and he gave you to me. “ She truly considers April a gift. Glenna sometimes wonders why April has to live with MD, but she never wonders why she was called to be her mom saying “I know this is what I’m called to do.”   She says April is a happy child. Glenna said “She is funny, smart, and has a great sense of humor. She make me laugh and brings joy to our home.”   Glenna says laughter is good medicine and you‘ve got to have some!

Glenna encourages other caregivers to go to support groups and spiritual counseling that will help them deal with the stress of caregiving. She said “Take advantage of the offers from people to help. Ask for help too. Don’t do everything on your own. I tried it on my own, but learned I had limits. You’ve got to ask for and accept help.” Glenna is blessed that her mother Marjorie lives right next door and helps when needed and that she has the help of home health care nurses as well. This help has been critical the last 5 months after Glenna tore a ligament in her shoulder in May and had surgery. It’s estimated to be a 1 year recovery. Since April is in a wheelchair, this is a serious obstacle in caretaking to assist April with daily activities. Luckily her 78 year-old mom has jumped in to help when the home healthcare nurses are not around.

A common issue with caregivers is lack of self-care. Not taking time to rest, eat well, exercise, or get away from caretaking. Glenna said that she makes it a priority to take mini vacations where the whole family will go some place close by for rest. More importantly, she also takes a ladies vacation every year with some friends where she can completely unplug. Glenna also enjoys nature and being outside, so taking the time to garden and be outside is something she does intentionally to deal with the stress of her job and home life. While that’s not an option all year round and winter can make her blue, she has also learned to let things roll off that she can’t control.

Glenna’s mom Marjorie says that Glenna is just a good-hearted person and is made for taking care of others who have special needs. She also says Glenna loves the Lord and that plays a big part in who she is. It is clear that Glenna is a special person. She states it simply saying “people with disabilities, whether physical, developmental or intellectual need care. Have fun and do the best you can with life. You’ve only got one shot. Make Memories.”

 

Life Goes On

Kevin Perry is a positive, easy going young man, who has had more than his share of life challenges. Yet his perspective on enjoying life and pursuing his interests hasn’t been derailed by those challenges. Kevin was diagnosed at the age of 5 with Duchenne Muscular Dystrophy (DMD). Since he was the first and only one in his family to have the disease, it was a big surprise. Kevin was reliant on a wheelchair by the time he was 10 years old. His mom Lori says he’s always had a good attitude about it. Lori and Kevin’s dad, Drew divorced when Kevin was just 1, but they maintained shared custody and continued to work well together to love and raise Kevin.

Lori and Drew kept Kevin involved and active as possible doing boy scouts, playing baseball in the neighborhood, and eventually doing power soccer at 11 years old. Kevin has been a 5 time National Champ on his power soccer team, playing as the goalie. He loves playing power soccer and traveling with the team to places like Arizona and Florida. He also enjoys it because it is something he can do on his own and it gives him a feeling of independence.

Kevin is not only an athlete but also an artist. He has had his art selected for shows in High School. Since graduating High School, he has taken some college classes and has an interest in pursuing a career in Graphic Design. Lori said “I’m very proud of Kevin for graduating High School and always doing his work. I never really had to press him to keep up. “ She shared how he is fun, smart and bit of a natural leader when it comes to doing group projects.

In addition to rising above the daily challenges of MD, Kevin had to face a serious emotional challenge most people can’t imagine dealing with. It was last winter when he and Lori got news that his dad was murdered. It has been hard on Kevin and Lori, but Lori says Kevin is resilient and knows that even though bad things happen, life goes on. Lori says Kevin is a very positive person, which helps him in handling the challenges he faces.

How does life go on? Lori said they had to adjust to spending everyday together since they use to have breaks from each other. Kevin and Lori still make it a priority to get out and enjoy a lot of activities and entertainment. Two of his favorite things he did this last year was going to the Indy 500 and to a game at Notre Dame. He also enjoys NASCAR and NHRA. At home, Kevin spends time playing video games and has shown some interest in designing video games. He also likes dining out as he is a self-proclaimed “Foodie.” His dad was a recreational gourmet chef, which gave Kevin a pallet for trying new and different foods. One of his favorite places to eat is “Rook” in downtown Indy.

When I questioned how Kevin always remained so positive, Kevin and Lori both said he’s just that way. Lori said it’s also been invaluable for them to attend the MDFF Holiday Party after he was diagnosed and the MDFF summer picnics(I didn’t pay her to say that). She said it has been great for him to be around peers that have Muscular Dystrophy and to see that he is normal.

When I asked Kevin if he thinks he is an inspiration, he said “I think so. People see how I handle my disability and that inspires them to act the same way. They see how I try and it encourages them to try too.

Kevin encourages others with MD to not give up. He said “Do everything you want to. Don’t let it keep you from doing anything you want to do. Your disability doesn’t need to hold you back.”

Brotherly Love

Jake Cowen is a sweet and charming 16 year-old boy.   He was diagnosed as a baby with Congenital Myotonic MD Type I. While he’s had his challenges, he’s joyful and has parents who have made quality of life a priority.

Andy’s parents, Greg & Susie, say Jake is outgoing, very funny, and strong willed. Everyone in his family says he is very loving, and one way he shows it is by hugging people. As a matter a fact, he hugs people so much that he has earned the nickname “Heimlich” after the caterpillar in “A Bugs Life”. He’s also been known to just go up to pretty girls at parties and hug them then ask their name. It seems to work for him. In short, Jake loves being with people, and people treat him really well.

Jake is high-functioning, still able to walk short distances and has full use of his arms. He’s been on an oxygen machine for about 2 years. Jake has had the opportunity to do some really cool things in his life. He has been the coin toss boy for the Colts, he has been to Disneyworld, and he’s been a Riley Calendar Artist. While all those things were special, some of his favorite things are church and Guy Night.

Jake attends church weekly, along with the High School Group at North Beach, and 2 LifeGroups. He’s even had the opportunity to do a short sermon and sing on stage. He got a podium for Christmas last year and he practices giving sermons and having concerts. His faith is very important to him and has been critical in keeping things in perspective. Jake said “If I didn’t believe and have faith and trust in Jesus, I would be miserable. You need faith and trust.”   He also knows when he gets to heaven, his physical limitations will be gone and he can ask God why he had MD.

The other thing Jake gets excited about is Guy Night. Jake is a middle child with a younger sister named Rachel, and an older brother Andy who graduated college 2 years ago. Greg & Susie said Andy and Jake have a very special bond. They have never seen an older brother take such good care of a younger sibling. Andy is 8 years older than Jake and doesn’t live at home anymore. Susie said “Andy makes it a priority every week to come home and spend time with Jake – making it so much fun, and getting his friends to come too.”   Andy would say Jake is the one that brings the fun. Andy smiles saying “Jake is very funny and always laughing and trying to make something into a joke. “

Guy Night evolved out of the intentional time Andy spent with Jake weekly, and eventually evolved into inviting other friends. Why is it special? Jake said “Its important to both of us because my brother works so hard everyday. It gives him a chance to have fun. I work hard at school too.” Guy night has 4 rules:

  1. Always has food
  2. Always has a Game
  3. No Girls
  4. Always start with singing the National Anthem, no matter what restaurant or public place you are in.

Jakes favorite game is Apples to Apples, even though Eddie(one of Andy’s friends) cheats. He laughs and says “its funny that he cheats.” They go out to eat at lots of places, but Freddy’s is one of his favorites. He loves the Freddy sauce. One more highlight of Guy Night, Jake has been known to break the rules and invite girls occasionally.

Jake would encourage others with MD that aren’t getting out to “drink some coffee, and go and smell the flowers.” He also said “If you have a brother who is healthy and strong, talk to him about having Guy Night.”

As final evidence of the mutual love and appreciation Jake has for Andy, he became very articulate saying “Andy has helped me in growing up, to be cheerful, loving, and caring. He has helped me to love my sister and mom and dad. He helps me to be much more obedient. Andy is the best brother I could ever have. He not only is my brother but has a big heart, and loves his friends as much as he loves me. He’s also a coach and an accountant. God has plans for his life and my life too. Just like Andy, you will see how much caring will make a better world, and it teaches you to work hard. Thank You. “

 

 

A Life of Impact

Everyone hopes to have a full life, be successful and love others well.   Gary Byrkett was a man who accomplished all of that. Gary was one of 3 kids and enjoyed participating in a wide range of activities. They include: 4-H, baseball, wrestling, jazz music and motor sports. Although very active, his younger sister Theresa remembers him being clumsy when he was younger. At the age of approximately 14, he was diagnosed with Friedreich’s Ataxia, a form of muscular dystrophy. He was the first and only one in his family with the disease. While this was hard news, it didn’t stop Gary and he continued to pursue every dream he had and not let the disease slow him down.

Gary went on to college and graduated from IUPUI with an Engineering degree in 1972. He spent his entire career working at St. Francis Hospital and retired after 32 years. He had many achievements over his lifetime he was proud of, but didn’t let his work life keep him from having a personal life. In 1984 he married his true love, Sharon. She was a social worker and a determined, caring woman that complimented Gary well. She too had Muscular Dystrophy. They were both reliant on wheelchairs when they got married, yet were still self-sufficient enough to live independently with limited visits from home healthcare.

Gary and Sharon were devoted advocates for the disabled. Gary served on the Board of Directors of the Indianapolis Resource Center for Independent Living (later known as accessABILITY) for several years and received his first of two gubernatorial appointments by Evan Bayh to the Indiana Council in Independent Living (ICOIL) in 1996 and was elected State Chairman 2 years later.

Gary was not only determined to pursue his dreams and not let MD stop him, but he was also committed to help other people with MD keep living a full life. He and Sharon often met with families or individuals dealing with an MD diagnosis to encourage them and let them know that life doesn’t have to be over for you. He also supported others with disabilities in more formal roles such as Chapter President and co-facilitator of an adult support group, and occasionally did motivational speaking.

With all these amazing accomplishments, it wasn’t surprising when Gary won the Muscular Dystrophy Association’s Outstanding Achievement Award, an award Sharon also received. Gary and Sharon accomplished a lot together before Sharon passed away in 2009 after 8 years of battling breast cancer. A few years later Gary was awarded the IUPUI Spirit of Philanthropy Award in 2012 for creating a scholarship fund at the IU School of Social Work in Sharon’s name. His hope was to keep Sharon’s keen sense of helping others burning brightly in students for years to come. The Sharon Kay Arvin Byrkett Social Work Scholarship is awarded at Indiana University School of Social Work to assist students with disabilities.

Gary continued to live independently for another 7 years after Sharon passed away. The only additional care he required was in his last year when he started having people come over to stay the night in case he needed assistance. His little sister Theresa says Gary is her hero. She said “he never felt sorry for himself, and was always a go-getter.” He inspired others, advocated for people with disabilities, mentored families all while having a successful engineering career and loving marriage. He eventually passed away from heart issues caused by Muscular Dystrophy.

He continued his generosity until the very end, leaving significant amounts of money in his will to four different not-for-profit organizations. Living to the age of 66, he lived a full life and didn’t let MD get in the way of accomplishing all the things he was created to do. Today, his story continues to inspire others and encourage people with MD to pursue their dreams and not let MD stop them.

           Gary Byrkett                                                                                                            August 21, 1950 – June 20, 2016                                                                             A life of Purpose.                                                                                                                     A life of Service.                                                                                                                      A life of Influence.                                                                                                                 A life of Impact.

Fighting for Family

Sara Banghart is a single mom of 2 kids ages 6 and 4. She had a heartbreaking experience her first pregnancy, finding out there was a problem with the baby at 18 weeks and he wouldn’t survive. She carried him 34 weeks and he lived only 1 day.

When she became pregnant again, she had another very difficult pregnancy with various issues. Nonetheless, she was grateful the day she delivered her daughter Raelyn who was perfectly healthy. Or at least that’s what it appeared. After getting home, Raelynn was not eating and sleeping way too much, an estimated 22.5 hours a day. After 8 weeks she had only gained 15oz since birth and Sara began asking questions of the doctors. After several false diagnoses, long days of testing and various doctors she was diagnosed. It was the Tuesday before Thanksgiving and they told Sara her 3 month old had Pompe, a very rare neuromuscular disease.

Luckily, a drug had been released just 5 years earlier that helps slow down the progression of Pompe and they began infusions for Raelyn immediately. A central line was put in her chest at 6 months, and a port in at 1 yr old for her enzyme infusions. This prevented her from crawling as a baby. As the disease impacts the muscles, Raelyn has also never walked. Sara is grateful for the early diagnosis, as only 1000 people in the US have been diagnosed with Pompe, and the disease is hard to diagnose. Having an early diagnosis enabled them to begin the enzyme infusions early, which is a blessing.

Sara had left her job to take care of Raelyn when she was diagnosed. When she was 1, Sara tried to work part-time, just 4 hours a week. It was important to her to just to get out of the house. But it only lasted a few months and she realized Raelyn needed her fulltime. Although she had been taught to work hard, and be independent, she had to fully let go of working outside of the home to care for Raelyn.

Raelyn is now 6 years old now. Sara says she is a trooper and an overcomer. Sara said “She goes non-stop, is spunky, wants to do everything, is positive and keeps me positive. There are sad times when she says things like I want to be a ballerina, but I know I can’t.” Sara says those times break her heart, but they never last too long. Overall, doctors say Raelynn is doing really well and Sara is grateful for that.

Being a mom of 2 young kids and one in a wheelchair is very demanding. Yet Sara still makes time to help her mother who was diagnosed with Anaplastic Thyroid Cancer in 2014, when Raelyn was 3 years old. Sara became her mom’s live-in caregiver for 3 months after her mom, Denise, had 4 surgeries and couldn’t move on her own.

As Denise healed, she was able to become more independent, needing Sara less during the day while her husband was at work. Today, Sara still helps her mom by cleaning her house weekly, taking her to doctor appointments and helping her run errands. Her mom is in a wheelchair because the cancer has deteriorated her bones. Running errands sometimes includes taking Denise in her manual wheelchair, putting Raelyn in Denise’s lap, and requiring her 4 year old Jaxsen to stay close since Sara has to push her mom and daughter in the wheelchair.   When I asked, why not let one of your siblings or a home healthcare company take care of your mom, Sara said “ my mom is my best friend, my biggest supporter growing up, and I enjoy giving back and helping her because she has helped me so much.”

When I asked Denise about Sara, she said “Sara is an angel of a mom and I believe God picked her to be Raelyn’s mom because she would be the best parent for Raelynn. She is persistent in fighting for Raelyn’s needs, and does so without getting angry. I’m so proud of her and the mother she is.” Denise says Sara handles challenges and pressure well, although she gets a lot of headaches because of the stress.   Nonetheless, Denise said she never complains and just keeps moving forward.

Being a caregiver can be overwhelming but it also has its benefits. Sara said “Taking care of my mom is fulfilling because she is in a situation where she is tired and in pain. It gives her a sense of relief to get out and simply feel the air on her face. So much independence has been taken from her, and I’m able to give her a little of it back.   It’s the simple things others take for granted.”   As for the sacrifices she makes to care for Raelyn, it’s fulfilling for Sara because of the baby she lost. Sara said “I now have this beautiful, smart, funny little girl and I get to be her mom. Even with her limitations, it’s fulfilling to stay home with her, do crafts and see her face light up as she laughs and plays.“

Sara’s advice to other caregiver parents: “Hug your kids, and try to remember you can’t control everything, so focus on the things you can. Research and learn. Don’t give up. Try to stay positive, even though it is difficult. Fight your hardest to make everything ok, and never give up. Give it everything you have. These are the cards you’ve been dealt. Never stop trying to provide them as much normalcy as possible. It means everything to them.”

A Quote Sara Lives by: “Strength grows in the moment you think you can’t go on, but you keep going anyway!”  Thank you Sara for inspiring us with how you lovingly care for your family, your selflessness, and your persistence to keep fighting for the things that matter most.

 

 

A Leader Worth Following

Chloe was diagnosed with Spinal Muscular Atrophy Type II right after her 1st birthday. She has never walked. She is a middle child and only girl. Both her brothers also have the same type of Muscular Dystrophy, although she was the first one diagnosed. The boys’ diseases progressed much slower and they were not reliant on wheelchairs until the ages of 13 for her younger brother, and 18 for her older brother. In contrast, Chloe learned to navigate a power chair at the young age of 2. Seems crazy that a 2 year old would be driving a power chair, but once you get to know Chloe, it doesn’t seem so odd because you realize she’s remarkably smart and driven.

She enjoys the same things any typical teenage girl does like going to the mall, shopping and just hanging out with friends. She enjoys singing, and not just when she is alone. She has competed in talent shows and won the talent show her Freshman year at Carmel High School. Her mom Alicia describes her as spunky and a good self-advocate, standing up for herself in pursuing her dreams. Alicia says “she is brave enough to say what needs to be said.” She also stands up for others. She is very empathetic towards others who have physical challenges. She is eager to help the elderly who struggle to walk or anyone else she sees that struggles with mobility since that’s all she has ever known.

Like so many teens, she has bouts of depression. Chloe combats it with interacting with other people so her mind won’t go to dark places. She says it’s important to keep positive people around. She is used to the disease since she has lived with it since she was one-year old. Chloe says “I know things will get worse but I don’t let it ruin my life.”

Chloe is a senior in high school and is on track to graduate early, despite missing approximately 1/3 of the school days from getting sick with colds and pneumonia. She has a 3.5 GPA and works hard to always ensure she keeps up and gets her work done in time, even when she is absent. As challenging as high school is these days, that takes a lot of hard work, determination and responsibility.  Her favorite subject is Algebra. She says it’s really easy for her. Her mom says she is incredibly smart and can do anything she puts her mind to.

Chloe has plans to go on to college at IUPUI and study business. She aspires to open her own business where she can employ people with disabilities since it is often difficult for them to get jobs, despite the fact that they are more than qualified. With a big grin on her face, she says “I already know where I want it to be and I have a business layout in mind.”

She acknowledges that she is inspiring saying “While most people don’t look past my chair, and some people laugh and stare, I don’t let it get to me.” Chloe’s favorite quote for both boys and girls is “pick your head up princess, your tiara is falling.” She says “Everyone is beautiful in their own way. Rock what you got. Show everyone how cool and unique you are.” Chloe Caldwell is more than cool, and I expect we will see more headlines on Chloe as she breaks through barriers and shows the world that she is a leader with purpose and passion that can’t be stopped.

 

Playing the Cards You’ve Been Dealt

Dewey was an only child, growing up actively involved in soccer and baseball. When he hit puberty, it got more awkward than normal and he started having balance issues. At the age of 13 he was diagnosed with Friedreich’s Ataxia muscular dystrophy. While it mainly effects the nervous system and heart, major neurological symptoms include muscle weakness and, of course, ataxia, a loss of balance and coordination. He had a cousin on his mother’s side that also had the disease.

Dewey continued to play soccer until his sophomore year of high school and had to start using a wheelchair by his senior year. Dewey went on to attend college at Penn State and get a double major in Computer Science and Math. While in college he moved to a power chair, but then after 5 years went back to a manual chair to keep his upper body strength. He worked in application development and volunteered at a local library after college and about 5 years ago moved to Indiana with his mother.

His mom, Pam, says Dewey is intelligent, insightful and articulate. While his speech is a little slower, his brain simply works faster than he can get the words out. She is proud of the man he has become. She describes him as honest, caring, trustworthy, and hardworking. Every time I’ve been around Dewey, he has a joyful spirit and a smile on his face. Pam says that is what inspires people. They see that things are not as easy for him with his handicap, but he’s still smiling! Dewey is great with people, and has a unique balance of being straightforward yet kind in his delivery. That is a trait that makes people appreciate him as genuine and likeable. Pam said his caring side was evident from a very young age when he would step in and defend or protect people at school who were being bullied.

Dewey is now 32 and is still using his manual chair, keeping his arm muscles remarkably strong. He really enjoys taking his dog on walks, and going to the grocery store and running errands just to get out of the house. One thing he did this summer that was particularly fun was going to a Dog Exhibit at the Eiteljorg Museum of American Indians and Western Art. He simply enjoys learning and seeing new things. Dewey likes keeping his mind and body as active as possible, and especially likes interacting with other people.

Dewey encourages others with MD to not look at it as a bad thing, but to consider it a challenge, acknowledging we all have challenges. He earnestly reflects on it; noting people in poverty, 3rd world countries or those with cancer have it much worse. He says “It’s not a bad thing. I’m not being punished or kept down. I’m not a victim. It’s not the luck of the draw, but how you play the cards you’ve been dealt.” From my time with Dewey and his mom, he is playing his cards well.

 

 

Success through Tenacity

 

Matt Griffin seems to be the guy everyone knows and loves. I met him recently at a zoo social, and people just kept flocking to him and were so excited to see him. So I sat down with Matt over lunch to see what’s so special about this guy.

Matt was diagnosed at the age of 6 with Muscular Dystrophy (MD) and was the first in his family to be diagnosed with the disease. Doctors have never been able to identify the exact type, but it was a sudden onset. One day in the 1st grade he suddenly had weakness in his legs and would have days he just couldn’t walk. Before the end of the school year he was in a manual wheelchair. He didn’t rely on it full-time, but always had to keep it close by because he would randomly lose strength in his legs. He was in a power wheelchair by 8th grade. He says he was a typical moody, often depressed teenager who didn’t get out much.

While he wasn’t very active in high school, he did start power soccer. Power soccer in itself wasn’t life changing, but it did give him enough confidence to go to college. In college, Matt said his life did totally change and take a whole new direction. He figured out he was really good with computers. It was empowering and he began to realize he could do more than what he was doing. He joined a Coed Service Fraternity that focused on Leadership, Friendship and Service. He forced himself to become more social, grew in his natural leadership skills, got out in the community and made a difference through serving others.

He graduated with a Bachelor’s degree in Computer Information Technology while working 2 part-time jobs. He started a job with a computer consulting firm before ever graduating college, and went on to be the Technical Team Lead within 3 years of graduation. Today he’s a Systems Architect at Gaylor Electric, and he owns 2 businesses. He’s a partner in an IT Consulting firm that he started 2 years ago called “IT Fellas” and he started Griffin Drone Photography this past year where he does aerial photography and videography, something he absolutely loves doing.

I spoke to Matt’s mom Linda and she is incredibly proud of Matt. She says he’s remarkably independent, determined, hardworking, and unbelievably successful. She said when she went on vacation a couple of years ago, she came home to a big surprise. Matt sat her down and told her he had bought a house and was moving out on his own. This is something she never really thought he would do, but he’s done great. She also said she was so amazed at his determination last year when he decided to lose weight and revert back to a manual wheelchair after 14 years in a powerchair. He lost 50 lbs, eating well and exercising from a manual chair. Four months ago, he transitioned full-time to a manual chair! On a more personal side, she also says, endearingly, that he is sweet, loving and a great cook. I’m starting to see why everyone is drawn to Matt.

Up until 4 years ago, he was still playing power soccer. He played on the best team in the nation and made Team USA in 2011. However, due to his busy work life, he had to quit the team. Matt talks a lot about priorities. He also makes time to volunteer with various organizations. He says some people say they don’t have time to do something they are really interested in. But he believes you make time for things that are more important and YOU decide what’s more important than other things. It’s all about priorities.

Matt is busy to say the least, but does acknowledge you need down time. I’m not sure how much down time he gets, as he feels like he’s making up for doing nothing for so many years.

He still has days when he feels down, but his solution is to just make yourself go out and do something. He recommends that for others too, saying “when you get out and do something, you will realize your life is better than you think.” Matt said “The worst thing you can do is get stuck in your own mind. Stimulate your mind and socialize with others.” He’s a big advocate of volunteering in the community.   Matt said “it’s a good way to give back and force socialization,” something he says isn’t natural for him as an introvert.

Advice he gives to others with MD:  “Put your mind to it, and you can do it. Set a goal. There is always a certain degree of failure to be expected, but that’s what is going to help you build your tenacity. The things you are most proud of you’ve usually had to work hard for. Live in the moment and don’t get stuck in the past failure. Just learn from it, then focus on what’s now and next.” There is no telling what is next for this guy, but I’m sure its something great!

An Uncommon Love Story

Becky Doyle has been happily married to her husband Tim for 15 years. Tim was diagnosed with Limb Girdle Muscular Dystrophy (MD) on his 16th Birthday. Tim was one of 7 children, of which 4 ended up being diagnosed with MD. His dreams of being a ball player were shattered, and plans for his life were turned upside down. Like many parents, The Doyles had tremendous guilt, as MD is hereditary and passed on from a parent. Tim did go on to college and became a CPA for one of the largest CPA firms in the world. He was in a wheelchair by the time he was 30, which is when he found God and a new outlook on life. But this story is really more about Becky than Tim.

Becky started telling me her story with a laugh saying prior to meeting her husband Tim “I was tired of dating losers.” She said she met Tim in a singles group at church in January, 2001. He was filling in for the leader and teaching, and she remembers thinking “if only I could find a guy like that.” It would be over a month before they would have a “real conversation” and another four months before he asked her out. Tim was already in a wheelchair when they met, and Becky remembers thinking, “I don’t know what I’m doing. I don’t want to break this guy’s heart, but I don’t really think I have caregiving in my bones.” Nonetheless, she really liked him and followed her heart and kept dating him. Within a month, she remembers praying that Tim would ask her to marry him. They were engaged by September, and married on February 23, 2002.

How did she adjust to being a caregiver? She was walking into a marriage with a man who was fully reliant on a wheelchair, lifts, and other assistive devices to simply get up out of bed and move around. Tim had used home health care for several years, and they agreed to keep it after they got married. But on their honeymoon, the home healthcare nurse didn’t show up. So Becky got a crash course in how to move him, help him and care for him. But when they returned, Becky still worked full-time so they kept the home health care which gave her an opportunity to learn from them how to properly use machinery, equipment and help Tim with the things he needed to be safe and mobile. She also said she could always see what was ahead since Tim’s older sister was further along with the progression of her MD.

After a couple of years of marriage, Becky quit her job and started caring for Tim full-time, and helping manage care for his siblings as well. That seems like a big leap from the notion “I don’t think I have caregiving in my bones.” Becky says she actually enjoys managing care for his siblings, helping his mom, and caring for Tim. She says its like figuring out a puzzle. Everything takes pre-planning, problem solving and being creative. Something Becky thrives on.

If you ever wondered what a day in the life of caregiver looks like, Becky shared hers. Becky gets up at 4am (that is not a typo). She gets herself ready, then it takes 2 hours to get Tim ready, and it isn’t because he’s fussy about his hair. She drives him to work, then makes it home around 9am to take a nap. She makes it a priority to work out, then does housework, errands, helps with the rest of the family by taking them to doctors appointments and managing various needs, then heads back to pick-up Tim from work.

She laughs that she has 2 bachelors degrees but drives for a living. I’m sure many moms can relate to that. Becky said they use to have a van that was modified for Tim to drive and it would break down at the worst time, in the worst places. It wasn’t like he could jump out and walk to the gas station for help.

Becky says one of her greatest fears is Tim outliving her. She says Tim’s Dad shared with her how his prayers changed over the years from “please heal them, to help us get through this, then finally to just let me live one day longer than them.”

Becky says her faith has the biggest impact on her outlook. When she begins to worry, she prays and reminds herself that God has not changed. God knows how many days Tim has left on earth. No matter what news they get, that has not changed. When she gets down, she eats chocolate, prays, and works out to help relieve stress. But she says the best antidote is Tim. “He’s funny and makes me laugh. He just brings an element of fun to everything.”

Advice she’d give to other caregivers:

  1. Take care of yourself. You need to keep your mind clear and your body strong even though it may seem like the hardest thing to do.
  2. Ask for help. She acknowledges she probably has more time than others to squeeze in self care as many caregivers are assisting their loved ones 24 hours a day. That’s why asking for help is critical. People want to help, they just need to be asked.
  3. Talk to other caregivers. You can find great comfort and sanity in relationships with other caregivers.
  4. Plan what you can and roll with the rest.

She also has a very passionate plea for kids with MD. She wants them to know that you should stay in school so you can get out in the world and enjoy work. She says “This disease does not define your life, even though it may drastically shape it. Tim is a partner in a CPA firm. You can accomplish your dreams too. Fight for it. You can do it.”

Becky is a blessing and encouragement to so many, not just the Doyle family.   But she feels she is the one blessed.  She says she can’t imagine life without Tim. Becky said “He’s fun to be around, and is definitely the fun one of the 2 of us. He has a focused side but it’s fun Tim I love the most. He just makes life FUN!”

 

I’m Just Human

If you haven’t met Jake Bray, you should. He is a 31 year-old, energetic, social, fun-loving guy. He just happens to have muscular dystrophy (MD). He was diagnosed at the age of 6 with Facioscapulohumeral (FSH) MD, but now they think it’s something more severe than FSH. Jake says he doesn’t really care what kind it is, it doesn’t change anything. Jake is the first in his family to be diagnosed with MD and has been confined to a wheelchair for several years.

Jake graduated from IUPUI with a Medical Billing and Coding Certificate. He says, even though he doesn’t work in that field he felt like it was a good experience. In high school, he was given extended time on his tests, but in college there wasn’t extra time so he learned he didn’t need special treatment to get good grades. Jake said “I proved to myself I’m not stupid and I graduated with a 3.9 GPA.”

Jake has an obsession with music and loves going to concerts. This summer one of his favorite concerts was seeing Chris Cornell from Soundgarden which had been a bucket list item for him. Other things he does to get out and enjoy life includes going to watch the Colts, Pacers and Indians play. He currently works at Lowes, and says he enjoys meeting people, but he also does it because he’s got bills to pay and hobbies to fund!

Jake said that his mom helps keep him positive. She never gives up on him. He credits her with keeping him alive through 3 comas. Twice when he wrecked his bike when he was younger, and then again when he had a trach surgery at 13. Jake said “She didn’t give up on me. She just loved me through it.”

When I asked Jake what he does when he gets down, he said he’s never really been depressed. He said, even when his girlfriend of 7.5 years broke up with him he just chose to be happy for her. If you ask me, that’s more than having a good outlook! He is genuinely a kind soul and cares about others.

He encourages others with MD to just get out and enjoy life. He said “I use to just stay home on the computer. I was once in your shoes but then several years ago I decided to get a job where I made lots of friends. I really fit in and they don’t care that I’m in a wheelchair. Ultimately, you are one of them. “

When I asked Jake if he inspires people, he said “No. I’m just human.” He believes people with MD can be positive and strong. He said “I’m strong because I have a strong personality. I’m just me.” To say the least, Jake is humble and comfortable in his own skin. Something everyone desires, but few achieve.

Educate: Duchenne & Becker | In Memory of Andrew “Sparky” Seever

Duchenne muscular dystrophy (DMD) is the most common form of muscular dystrophy (MD) impacting 1 in 3,500 boys.   A very similar form of MD is Becker muscular dystrophy (BMD). While DMD is caused by an absence of dystrophin, a protein that helps keep muscle cells in tact, Becker muscular dystrophy occurs when a different mutation in the same gene results in some dystrophin, but it’s either not enough or it’s poor in quality.   While similar to DMD, Becker is much milder, symptoms appear later, and progression is slower.   Becker also affects primarily males (1 in 30,000) and causes heart problems.

Like most forms of muscular dystrophy, the disease severity varies significantly within types. Sympton onset usually start before a child’s thirdbirthday. They are generally wheelchair-bound by the age of 12 when most their peers are starting to gain more independence and freedom. Instead, they become more dependent on their parents and caregivers, making the teen years even more difficult.

It’s a disease that takes too many lives too early. That was the case with Andrew Seever. Andrew served on our Board of Directors for the past three years. He was diagnosed at the age of 5 with DMD, a little older than most, and the first in his family with the disease. Unfortunately, his disease was a quick progression and he was reliant on a wheelchair by the time he was 9 years old.  A young boy who always had a smile on his face, just kept smiling. DMD Symptoms include muscle weakness primarily affecting the trunk of the body including the pelvis, upper arms, and upper legs and eventually all voluntary muscles. Severe breathing and heart problems mark the later stages of the disease.

Although Andrew was reliant on a wheelchair and numerous other assistive devices for mobility for the last 17 years, he didn’t let his disease stop him from enjoying life. Andrew graduated from Ball State University in 2013 with a major in General Studies, and double minor in History and Math. He was witty, and wise beyond his age. He joined the MDFF Board of Directors in 2014, finding ways to help and create community with his fellow friends who also had MD and other debilitating diseases. He loved all kinds of music, enjoyed traveling and planning family vacations, loved history and playing power soccer for several years.

His mother Fran said he always saw the best in everybody, and never said a mean word.  She said he was great at encouraging everyone, and remembers him often saying “Mom, you may think you have it really bad, but others have it much worse.” He was given the nickname “Sparky” several years ago when he was at a Power Soccer tournament and the team was down. He jumped into action and cheered them up, rallying his team back to have fun and enjoy the game.

Until relatively recently, boys with DMD usually did not survive much beyond their teen years. Thanks to advances in cardiac and respiratory care, life expectancy is increasing and many young adults with DMD attend college, have careers, get married and have children. Survival into the early 30s is becoming more common, and there are cases of men living into their 40s and 50s. In contrast, those with BMD can usually walk into their 30s and live well into mid- to late adulthood. If the cardiac aspects of the disease are minimal, or if they are adequately controlled through medical intervention, a normal or nearly normal life span can be expected.

While this was not the case for Andrew as he passed away before his 28th birthday, his family is grateful for their memories with him and that he had great faith in God.   On Labor Day, September 4, 2017, his battle with DMD ended. The family takes comfort knowing he is singing his favorite musicand running in the gentle breeze with a completely healthy body and his creator at his side!

His family has asked that donations be made to MDFF in lieu of flowers in Andrews honor. Andrew’s Memorial Service is Saturday September 16th,  2 pm at Zionsville United Methodist Church.

Strength through Determination & Love

Throughout the month we’ll be sharing a “Fulfilled Friday” story about a person living with MD who is pursuing their dreams and not letting MD define them.

Todays story is about Lezlie. Lezlie grew up as an only child, and the first person in her family to be diagnosed with Muscular Dystrophy. She was 11years-old when she was diagnosed with Facioscapulohumeral (FSH) MD which is a slowly progressing MD with short periods of rapid muscle deterioration and weakness.   At the time, she was an active pre-teen enjoying acrobats, jazz and baton. Like many forms of MD the severity ranges significantly and the family had no real idea of what to expect. While her parents were devastated, they loved her well and didn’t shelter her from having a normal life and pursuing her dreams.

Lezlie went on to college and graduated with a double major, all while the disease began to impact her mobility. She had dreams of marrying and having children, but didn’t want to pass on the disease to her children. She had a boyfriend, Greg, in high school that she broke up with when she went to college, and Greg had gone on to marry and have 3 kids. When she was in her late 20s, Greg found himself single again his path crossed with Lezlie. The flames sparked and the two began dating.   By this time, Lezlie was heavily dependent on a wheelchair. But Greg didn’t care; he found her determination inspiring, was smitten with her, and finally convinced her to marry him.

After college, Lezlie struggled to find a good job. She applied for countless positions, and got rejection after rejection. She would take temporary jobs while she continued to apply just to get the experience on her resume. After 2 years, many people would have given up, saying no one would want to hire someone in a wheelchair with a progressively debilitating disease. Lezlie was determined to not let MD define who she was or what she did. She knew someone would eventually give her a chance. And all she needed was one chance to prove herself.

She finally got a position with the Madison County Employment & Training Department, then moved on to be a case worker with the Welfare Department before landing the position that would become a lifetime career as a Probation Officer. At first, she was intimidated and thought you had to be big and strong to be work with criminals. Nonetheless, she decided to accept the position and says it was the best thing she ever did.   After just a few months, 2 of her previous employers were asking for her to come back. She had gone from nobody wanting to hire her, to 3 employers wanting her. She decided to stick with her role as a probation officer and ended up working there for 29.5 years. She was a model employee, and was awarded Probation Officer of the year in Indiana in 2003. She truly excelled at her role, to the point where her co-workers once told her that even though she is in a wheelchair, they forget that she is disabled.

What did Lezlie enjoy about being a probation officer? She loved being productive and contributing to something important, helping people turn their lives around, and letting them know there is a better life. She genuinely cared about her clients, and some of them still keep in touch today.  Lezlie said “when you can help someone maintain sobriety and get their life back on track, it not only improves their quality of life, but that of their entire family. It’s like a ripple effect that can even impact their community and often the victim who obtains restitution. It affected me too, as it was empowering. When you are doing something positive, you don’t have time to dwell on anything negative.”

It can be easy to hear Lezlies story and forget the extraordinary challenges she faced daily to simply navigate her own home and office. But she did it.She helped raise 3 children that lovingly adore her, contributed her talents to helping people turn their lives around, and has been a great wife to her husband Greg. Lezlie will tell you her greatest encourager is Greg. They have been married for 29 years this November, and Greg’s deep love for Lezlie is incredibly evident when he speaks about her. Greg said he didn’t think any of them realized how greatly MD would impact their lives, and everyone in the family. He said “as I watch what it takes for her to just get up and get ready in the morning, I realize how much stronger she is than me. She doesn’t even complain. If she can accept it, I can too. It makes me realize I too can face anything. Don’t give up on the journey. My time with Lezlie has been wonderful and so rewarding. I wouldn’t trade the life I’ve had with her for anything.”

When you ask Lezlie what she’s most proud of, it’s simple. “I’ve lived a normal life as possible.” Lezlie says “people with MD can overcome their challenges with determination and the right mindset. It might not be the same way as everybody else, but put your mind to it and there will be a way to accomplish the goals you set for yourself.   The higher the goals the better. And when you overcome challenges, it makes you stronger.”

 

Service that Counts

Throughout the month of September, we’ll be featuring a “Thankful Thursday” story about an amazing Muscular Dystrophy caregiver.

Meet Al Debow.  Al served in Vietnam and has served his country, his family and countless other people throughout his career.  Al spent most his career working for Social Services helping people with disabilities.   He was married for 20 years to his first wife who passed away from a heart attack . Together they had 2 children, one of which was mentally handicapped. So in addition to working with the disabled, he raised a daughter with disabilities too. After his wife passed away in 1986, he became depressed and lonely. But that changed when he moved to Indiana and met Stephanie Miller.

Stephanie had adopted her nephew Thomas in 1997 who had been diagnosed with Muscular Dystrophy when he was 1 year old. She worked, took care of Thomas, his sister and her other 2 girls. Al says Stephanie and Thomas gave him purpose again. With his life history, he has found himself drawn to people with needs. So while most men would run, he found comfort and purpose.

Stephanie says he came into her life and told her “you don’t have to carry all that by yourself.” Around the time they got married, Thomas required scoliosis surgery. Since Stephanie had already had a biological son who passed away from MD, she was a wreck. She says Al was the calming force in their home. The voice of reason, reminding her that just because Vontey passed away, doesn’t mean she needs to live in fear with Thomas. Al is a constant encourager.

As their home needed modification for Thomas to navigate with his wheelchairs growing larger as he grew bigger, Al made all the house modifications and made sure Thomas had as much freedom to move around as they could provide.

Thomas says that Al is always around to help him and just ask him how he’s doing. He’s an emotional strength to the family, and is always willing to have the hard conversations that often come with medical care and decisions.

Stephanie and Al have been married for 12 years, and Thomas lovingly refers to him as Pops. If you ask Al what keeps his positive attitude going, he’ll tell you “don’t dwell on limitations.” Al is a Vietnam veteran, a father, a husband, and a selfless caregiver who willingly stepped in and said I’ll gladly take on this job with love and kindness. Thanks Al for reminding us that sacrifice and hard work are best spent on those we love.