Dear Mr. President…my dad was fired for having Parkinson’s

A thing we have learned on this journey, is that a disease affects the whole family and to not listen and validate our children’s voices would be ill-advised.

Children’s words are often uncomplicated and simplistic.

Our eldest daughter came down the stairs a year ago, handed me a letter and declared “I need you to mail this.”

The White House Pennsylvania Avenue Washington, DC

The White House
Pennsylvania Avenue
Washington, DC

I hesitated…… my brain unable to process what was happening…… came to… and said yes.

I opened it.

"He dint do anything wrong."

“He dint do anything wrong.”

Read and re-read it.

Wept for her reality.

He Didn't Do Anything Wrong

He Didn’t Do Anything Wrong

Drove to the post office

and as I slipped it in the mail slot, I felt overwhelmed by her ability not only to articulate but to EXPECT change.

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Because as a family we stand together, united to speak out, proud and leaning forward for those with disabilities that aren’t treated fairly.  It’s NOT enough to just wish Don to get better but, as a unified group, we have to BE better and foster change.

Libby did receive a response back from The President.

I think she felt she was heard.

Her truth was hard to handle but the real truth of being fired because you have a disease is a blinding reality for too many people in our community.

We will affect change.

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Game Changer – American Express Open Forum

A huge pause as I read a note from a players parent this morning.

“Coach Horton originally recruited Clif  for his O-Line scholarship at Boston College. Thanks Coach! You changed my son’s life. We are praying for you.”

Then I read and re-read again.   “You changed my son’s life.”

Some in athletics (and the greater world of life) think that because Don has Parkinson’s (or someone has a disability) it diminishes his (or their) abilities, passion and effectiveness on and off the field (job).  I will always take umbrage to that.  In every locker-room that I have ever stood in, there are signs of perseverance and motivation.  Don (and all who have disabilities) is a living day example of those true testaments.

Overlooking someone because they have a disability is the lowest display of power.

Overlooking someone because they have a disability is the lowest display of power.

MagnaReady was selected as a American Express Open Forum – Game Changer.  We help people improve their daily living experience BUT I am lucky and proud to share with my children that their father, Don Horton, changed lives.

Game Changer -by Carla Turchetti

Game Changer
-by Carla Turchetti

Website: www.MagnaReady.com

What She Does: Horton has designed and brought to market a line of men’s dress shirts that have magnets infused into the buttons. This makes it easier for those with diseases, disabilities or injuries to dress themselves in professional wear. “We are a company with innovative solutions for limited mobility apparel,” Horton says.

How She Started: Horton’s journey to create her first shirt was a very personal one. Her husband, Don, a former football coach for North Carolina State University, has Parkinson’s Disease. After one game, he was in the locker room and had difficulty buttoning his shirt—one of his players, Russell Willson, now a quarterback with the Seattle Seahawks, had to button it for him.

“He was embarrassed,” Horton says. “There aren’t many things with Parkinson’s that I can help him with, but this is one challenge I decided to take on.”

Why She’s a Game Changer: After hearing about that locker room incident, Horton ordered other shirts to see if she could find something that worked for her husband.

“They just didn’t meet my standards,” Horton says. And after carefully looking over the available options, mostly with hook and loop closures, Horton called on her background in design to create something she would like better.

“I had always been interested in design and I noticed that the tech world was turning to magnets,” Horton says. Inspired by tablet covers and purses with magnetic closures, she created a dress shirt with magnets as well. She had to find the perfect magnetic strength that made it easy enough to open and close but strong enough to keep the shirt fastened.

What’s Next: Thanks to the success of MagnaReady shirts, the company is about to add more products this summer.

“The outcry for women’s apparel is huge and we are about to launch that,” Horton says. “We have secured the patent rights for hospital patient gowns and we are going to debut children’s coats.”

RELATED: Game Changer: Creating a More Life-Like Prosthetic Foot

The idea for the children’s coats was also born of Horton’s family experiences. After struggles bundling up toddlers for blustery Northeastern winter days, she wanted to simply design something to make life easier.

Advice for Other Entrepreneurs: “Mentoring has been huge to me,” Horton says. After stepping away from the design world to raise her children and then diving back in with the launch of MagnaReady, Horton says she relied on advice from other professionals across other industries. “It’s good to be able to run things by other people,” Horton says.

And she has one other piece of advice: Don’t ever give up.”

Meet more ambitious entrepreneurs in our Game Changers series.

 

Coming Out Party!! Parkinson’s Awareness Month

Parkinson's Awareness

Parkinson’s Awareness

April is National Parkinson’s Awareness month. Our second official “out- open and proud” month. We had been living in a secluded world of don’t ask, don’t tell.  Making the announcement or declaration that you have Parkinson’s currently comes with as many side effects as the medicines Parkinson’s patients take on a daily basis.  At the core of every tremor or rigid movement is sleeplessness of how the disease will manifest, trepidation of being shunned, fear of ignorance and terror of loosing a job. The worry is endless.

Do you agree?

Do you agree?

Our angst stemmed from living and working in a sports arena where the environment is much like Tiger Woods and Nike’s new ad which states, “winning takes care of everything”.  We spoke soon after our diagnosis with an attorney friend in Boston who recommended Don notify his employer and as to anyone else, well, that was up to us.  So we took his advice. Don told Tom. We told our parents and then asked them to respect our privacy and keep it to themselves. They honored our requests.  We lived our lives.  Challenges came up- as did questions.  I was always amazed by our true friends- because they never asked. Not that they didn’t care- it’s just that they knew if we needed to talk about it- we would.  They didn’t need whatever was happening to us to be defined.

I remember being at our first NC State bowl game. We were at a kickoff  luncheon and a coaches wife, that was new to Tom’s staff, asked Don brashly- in front of boosters and alumni- what was wrong with his arm? and would it (infer he) ever be “normal”? Both Don and I witnessed her husband kick her under the table, as if to tell her to shut up but her ignorance was already on display. Don simply answered, no.  We never felt the need to explain.  Other times, people would inquire and we would say he had had a stroke. Who cares what it was.  If you were asking, most likely, we knew you were already judging.

I’ve read many peoples personal stories of their Parkinson’s coming out party- not telling- revealing to some or just simply confirming but July 2nd, 2012  is a news day I will remember.   Bill Geist, CBS Sunday reporter announced via a video message that he had been dealing with and hiding from his Parkinson’s diagnosis. “I told no one. Not even my kids.” For 10 years he and his wife lived with this secret.  He says “he didn’t want to be known as the sick guy” and that for “personal reasons he was afraid he would get laid off or wouldn’t get promoted”.  When he was asked whether it was a difficult decision to come out this way.  His answer, was simply, “a very difficult decision”.

http://www.cbsnews.com/8301-505269_162-57465578/bill-geist-parkinsons-revelation-very-difficult/

Someday, I hope Don will speak to how he felt about informing the people he cared for that his life would be forever different. More importantly I hope he speaks about keeping it inside for so long.  We went to great lengths pretending not to have this disease. It started by just refusing to let it control us but at some point it changed into something more. We began planning recreational things around “good” times of day, avoiding certain social situations where it may be an issue, donning sunglasses when he could to disguise the blank look that many Parkinson’s suffers have, being sensitive to Dons low voice and helping him repeat himself, always sensing when it was time to go. The list goes on an on.  Hiding the disease became a full-time job in itself.

Why do people cry?

Why do people cry?

When I “came clean” to a select few, all I remember were tears.  I couldn’t stop crying.  I couldn’t believe I had held it in for so long and even after all the time that had transpired, I still couldn’t believe it was our reality. It was as if verbalizing the diagnosis finally made it true.  As a caregiver you often see how people respond and internalize things.  We often see it all and in that “all”, I realized that the fears that kept us from disclosing it were happening whether we were forthcoming or not.  I can report, all of our angst and trepidation came as true as a Disney trip to the Magic Castle. It’s as if Cinderella waived her wand and voila, but it all happened, regardless of the way we chose to handle it. 

A Duke Fan Forever

Team Sweeney

Team Sweeney

We currently reside in the south and in a triangular area of a state that has deep dividing “what team do you pull for?” lines. We’ve been associated with teams for all of our lives. Beginning from the ones we are born in to.  My first team was a family of 12.   We could actually field our own football team, with a substitution for injury to boot!  An Irish Catholic group whose heart and soul could stand close to any Notre Dame team. My father had a friend actually suit our family up. This gear was pre Adidas or Nike contracts. Our small frames and entire backs  were incased with the letters SWEENEY.  Now and then when we went on family excursions to Kings Island or Disney, we would proudly don our jerseys, making it easy for my parents to assess if a child had strayed from the flock.  My mother, who has in uncanny sense of preserving our childhood memories, recently “presented” me with my  jersey.  I was Lucky number 12.  Memories flood back now when I see my youngest wear it to sleep at night.  I am thankful to recollect my first official group.

Don - Indian Hill Jersey

Don – Indian Hill Jersey

Don has been a life long team member.  The first jersey number he can recall – 21.  His favorite number – 70.  He literally has played a role at every capacity a team member can be.  Father, player, coach, recruiter, husband, speaker, rookie team trainer, brother, statistician, water boy.  You name it.  He has been it as some point in his lifetime, from little league, Indian Hill, Wittenberg, Ohio University, UVA, Capital, Ohio State, Southern Illinois, New Mexico State, Boston College to NC State.  His hope is that whatever lives he touched during this process, they were positively influenced and changed.  At our wedding rehearsal dinner one of his  close friends and fellow team mate, Scott presented him with his basketball jersey.  It was from their alma matter Indian Hill, where they proudly took the Eastern Hills League by storm in basketball. They fondly reminisced about their playing time and the roles they played on and off the field in each others lives. Being a part of a team is special and those relationships formed generally last forever.  We hope our kids remember more of the process of being on a team than their stats.   As parents, we would rather our kids receive a good teammate or sportsmanship award than a MVP any day.

We all like to be on the winning team, or working feverishly to achieve that status.  In this profession many ethical and great leaders have been “cut loose” because their wins didn’t necessarily translate to victories that were seen on a score board.  When Don had made his mind up to go ahead with the deep brain stimulation surgery, we both felt the immediate need to evaluate our team.  Don had been seeing a neurologist at Duke that was recommended when we relocated to North Carolina.  He was fine.  I’m sure inundated with patient overload had caused our appointments to be short and for several phone calls and emails to be unreturned for days.  After asking a few questions about his surgical experience and knowledge with DBS, we decided, together, that our team needed new players.  Research ensued, phone calls placed and meetings / appointment set.  We decided that we needn’t search far. We had found the right facility.  We just needed 5 star rated players.  We came together for the first appointment, armed with a defense of questions that would take hours.  Don stated our intentions of assessing his candidacy for DBS and we were looking for the right person to lead this effort.  One of the keys would be,  if you were going to cut into his brain and body, we would need a little better response than what we had been receiving from the previous doctor.  It felt right from the moment we shook hands. Our defenses put at ease.  We confirmed what the best game plan and forms of communication would be and to date his attention has been amazing.  So great, that a veteran recovery nurse remarked out of surgery that she rarely sees surgeons examine their patients in recovery, but there was Dr. Turner – just checking in.  He has been the beacon of light we needed to make such a large decision and I’m glad were weren’t afraid to make an adjustment.

Having worked in athletics now for 30 years, we completely understand the word loyalty and dedication to a team and now a cause.  So, when someone has any question of what team we root for……. we will proudly claim Duke.  So, go Coach K!  Carry on Coach Cutcliffe and most importantly, thank you Dr. Turner and Duke Hospital for the first class care that we have received.  We couldn’t ask for a better team in a battle that isn’t just a season at a time but everyday of our lives.

duke logo

Why I Admire Russell Wilson – The Last of Which Is Football

Russell and the Girls Bowl Christmas

This Sunday there is an amazing NFL game on – The Seattle Seahawks vs The Washington Redskins. Both teams have incredible rookie quarterbacks with current ESPN passing stats impressively ahead of Tom Brady, Ben Roethlisberger, and Drew Brees.  Their unexpected success so early in their career is an inspiration, and they have already become huge role models among rising youth, but in a battle between Robert Griffin III and Russell Wilson, Russell will always get my vote for MVP.  All things Russell amaze me.  Not only does he have the ability to persistently conquer challenges and routinely dispel doubts from his critics, but on and off the field, he actively lives a life that makes him a player with a tremendous heart.  These qualities are awe-inspiring, and for him, they seem to come naturally, and we were lucky to get to know him as a young athlete at NCSU.

A lot of things happen in the locker room.  Its a place where men celebrate victories, lick their wounds, visualize their next game and make new promises to themselves.   It’s a place of camaraderie where boys build each other up to become men.  In these walls are the sounds of pep talks, prayers before and after a game, strategies on how to win, the boisterous howls of team spirit and determination when the coach delivers his pre game speech. I just know that whatever happens in this ultimate mans cave stays in the confine of those walls.  Afterwards, once the game is over and the crowd has dispersed, the room gets quieter.  During away games, it’s a scramble to get cleaned up, get back to the team plane, and get back home. And it was in this type of moment, in the hush of a locker room after all players and coaches had gone, that my husband had a real struggle with Parkinson’s.  He was unable to button his shirt.

So, there stood 2 men.  One was  Don – a 50 something year old man responsible for teaching his players to protect the quarterback. The other was Russell Wilson, the 20-something-year-old quarterback that my husband was supposed to protect.  I’m sure Russell was one of the last guys because he had just completed post game interviews.  In the boundaries of this locker room, is where common decency and humanity happened.  Unfortunately limited mobility is one of the side effects of Parkinson’s and Don had expended all his energy on the field. Unaware of Don’s disease, Russell, a player with tremendous heart saw his struggle and helped. He just walked over and helped Don get dressed.  Without speaking a word, a tremendous human being didn’t pass judgement, didn’t ask questions and more importantly didn’t walk out of the room without making sure all was good.

Post Game

Russell, Girls and Friend Just Outside The Locker Room

When Don got home that night, he shared what had happened in the locker room.  He was embarrassed.  Yes, for the fact that he needed help, but more so for the fact that he was losing the ability to do the things that he took for granted.  That was early on in his disease where he, and truth be told we, had difficulty accepting some of the challenges that were ahead of us.  This was our wake-up call.  As he shared his concerns about getting into a situation like this again, inspiration hit, and I thought I could help him.   I’m not sure if Don ever thanked Russell, or if in a man’s world, that’s just something not spoken about.  However, I do remember personally giving Russell a letter of thanks from me.  In a football environment where struggles aren’t an everyday occurrence, Russell showed grace and humility.  The thank you was truly heartfelt because it’s difficult to express gratitude for something so personal.

our guest speaker... the bully?

our guest speaker… the bully?

In the off season of that year, Russell came to the rescue again.  I asked if he could come to my daughter’s school and speak to the students about bullying because I knew he would impart his wisdom, grace and first hand experience.  Without hesitation, he agreed to help out.  Obviously, the kids were enamored by his presence, but surprisingly it was what he shared that left the impression.  Russell admitted that he himself was a bully!  He talked about growing up and how he would target kids on the playground in attempt to acquire friends.  He then conveyed his turning point and how he now chooses to live his life.  The kids couldn’t get enough of him.  He was there to give a 30 minute lecture, but ended up staying and interacting with the kids for over an hour fielding questions on everything from his relationships with girls (he wasn’t married at the time), to God, to the music on his iPod and to the challenges of being a student athlete.   He was personable and kind and gave each of those 440 kids a once-in-a-lifetime experience.  Russell didn’t need to spend his down time doing this but somewhere I felt he was happy to have the platform.  Again, just a man living the life he speaks about.

My eldest daughter recently asked me in all seriousness, “How did Russell get a bowl named after him already?”  She just assumed that the Russell Athletic Bowl was named after him and not an apparel company.  When we watch Russell play, we see more than just a great athlete, or a stat with a story.  We see a remarkable human being that we know will have many things named after him one day.

Building Walls – The Offensive Line

Don Horton's True Love- the Game

Don Horton’s True Love- the Game of Football

Don has known he wanted to be in athletics his entire life.  At the earliest age of remembrance, he was geared up with some sort of ball, ready for action at anytime, blessed to live in an area and an era when pick-up games happened everyday, rain or shine, sleet or snow.  Those days in the open fields are some of his best memories.  His mother often tells the story that he could have followed in his father’s footsteps and became a surgeon.  She recalls a phone call that she received from a guidance counselor at his school.  “Don seems fascinated with this whole football thing. His test scores are very high and it is our recommendation that we steer him in another direction.”  She didn’t miss a beat.  Where some parents would concur and assist help in the matter, she declared that it was Don’s decision.  She has always empowered her children (and now grandchildren) with that same voice of choice – often asking them, “What would you like to do?”  And so, his love of the game persisted to grow and to flourish.  By the time I met Don, he was so fully entrenched that I had only one choice.  If I wanted our relationship to survive I too had to jump in.  It was an easy transition for me; a sister to 5 brothers (sandwiched right in between) who had me outside for countless hours as well, playing basketball, kickball or hotbox.  Somehow, I was always in the middle – never picked first among the boys, but I could hang and my competitive genes grew as well.  I’m actually not sure my parents can recall a basketball game that I didn’t foul out of.

Don and I met after a football game, one of his friends was dating one of mine.  He was coaching at the time at a division three school in Ohio; his alma matter- Wittenberg.  We commuted to see each other, and I, like his parents, never missed a game. Home or away- it was just what we did.  Many games were far and in small but beautiful rural towns.  Upon arriving, I would watch with pure amazement.  His ability to make split second decisions, encourage his players when they were down and to give everything he had everyday.  He rarely ever raised his voice.  He always said that if they didn’t know it by game time – screaming wouldn’t jog their memories.  I have always admired his strengths.  His quiet nature is humbling – he is never boastful.  He could always take any discussion down to the simplest of terms and navigate it gracefully.  His strengths just illuminate from within.  I was marrying the best man on this planet, but I was also sharing him with many others; a group of men called the offensive line.

He wanted to win – who doesn’t want to be successful – but he always chose to leave his imprint as his mentors, Dave Maurer, Ron Murphy and Tom O’Brien did with him.  The position he coached was always the most fascinating to me …. The Offensive Line.  This great massive group of men – 5 who stand to defend and protect on every play.  They rarely handle the ball, unless it’s fumbled.  They receive no accolades – silent warriors protecting a quarterback.  They act as a unit to be perfect – every snap so that the team has a chance for success.  They are big but have feet like ballet dancers. They are often the most feared and respected guys on the team.  And, within each of them, I see an amazing large heart that matches their physical appearance.

Bricks and Mortar

Bricks and Mortar- Jeremy Trueblood, Gosder Cherilus, Pat Ross, Josh Beekman, Ty Hall, Kevin Sheridan, James Marten, Tom Anevski

Brick and Mortar Of Our Team

Don has been surrounded by some of the best offensive lineman out there at every level.  I’ll brag a bit.  He was voted the second best offensive line coach in division one athletics ALL while he was coaching with Parkinson’s.  Around him a wall has been built – a wall of men that stand together, impermeable.  The courage these men demonstrate now to be associated with Don – in sickness or in health – is almost as strong as the vow I took some 19 years ago.  These men call him just to pick his brain, to say hi, to check on our children and share good and sad stories about their families that we’ve come to know.  These men are why I truly love football, and when these players became aware that Don is living with Parkinson’s, I have been brought to tears by how strong and supportive they have been.  Even when Don accepted a change in position, taking him off of the field, he still felt privileged to be surrounded by such fine athletes.    These athletes are, and always have been, the brick and mortar of our lives.

don oline bc

What Is In A Name? Everything!

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Hayes Elizabeth Horton

We waited 9 years to jump in the family game. All the while questions of when are you guys going to start a family had escalated and then ceased. I’m sure because our respective families had just given up. Being a coach’s wife there was never the right time, moving was always looming in the back of our heads. We wanted stability- something we both had. Don grew up an the idyllic town of Indian Hill, Ohio and I in Columbus Ohio. Neither of our parents had ever moved at this point- yes we were firmly planted midwesterners. So when we learned in July that we would be expecting our first born in early March. We were all delighted. The timing was perfect. College football coaches really only get two times a year of “down time”. One is in the first half of July, just after spring ball and high school camps and the second in late February early March concluding a grueling season and recruiting. So, I was looking forward to the fact that Don would be available and present.

The doctors visit that the second most common question asked during pregnancy came to light. Are you finding out the sex? Don and I approached this quiet differently. Of course I wanted to know. Plan, analyze and dwell on are things I’m quiet good at. Don who is actually the real strategic thinker of the family decided no … he would rather be surprised. So, as I sit in Dr. Morrais office watching the ultra sound screen for a clue … she asked….. Do you want to know? YES! Are you sure? Without Don? Answer again… Yes. Then the Catholic guilt started to set in and she said “I will write this down, seal it and when you get home you can open together if thats what you decide”. With anxious excitement Don walked in after a long day of two a days – he was in the middle of camp. “I said in this envelope the sex of our child is written down. Do you want to open it?” It was like having Willy Wonka’s golden ticket. “No, Maura I want to be surprised BUT you can… just keep it to yourself.” It laid there on our kitchen counter all night- sealed. The next morning he assured me that he would be ok if I knew but we would still plan name wise .. and room wise… for either sex and I wasn’t to tell anyone- family, friends, etc. Deal! He left. I opened it and it said GIRL. We really have been ok at accepting each others boundaries without resentment and he knew that a long football season with out him around to share in our new excitement would be hard enough. I’m sure he thought if I needed this bone… it was mine for the taking.

So after the morning sickness subsided it was time for the name game. We both knew we wanted a strong name, regardless of the sex. We both agreed that we would never name the child “TD” (touchdown) Horton and have to grow up in his fathers shadow and try to fill the name he was given. We wanted strong but not harsh. Smart but not a know it all. Memorable but not brazen. At the same time JK Rowling was making her impact and I loved the fact that in the beginning she succeeded with a name that was considered to be male. We decide we wanted a name that would go either way- for a boy or a girl. This was a harder challenge than one might think. I come from a family of 11 (yes, Irish Catholic) siblings. They had all started having their families and names were starting to run short in supply.

When I wasn’t even pondering the name of our child, I looked down at our coffee table and saw on top of the stack of books was one written by John Lombardo. The title… A Fire To Win. The Life And Times Of Woody Hayes

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I am a Buckeye by birth and married to someone who not only did his graduate work at The Ohio State University but also coached under Earl Bruce. It gave me pause…… Hayes Horton….. Hayes Horton…….I think I love it! Woody Hayes possessed a quick wit, a sense of humor, and a broad grin that could win over any crowd. Well respected, a little crazy and tough. Known for not being afraid of a fight but smart enough to know he had to plan for it. All good things in my book! Sounds like the qualities I hope for in a child. …..Next the Don test. Will Don really consider or will it be back to the drawing board? Not sure if it was from pure exhaustion from being in the middle of a season but ran it passed him without any objections…….Next the Horton family book… did the name exist? Was there once a Hayes Horton. We consulted the powers to be and yes, some time ago there was a Hayes Horton.  Its official no mater what sex we have name! A name with great character.

Three and a half years later we were introduced to a new person with the name Hayes. Michael Hayes. Actually, Dr. Michael Hayes- Neurologist at St. Elizabeth Hospital – the same place my Hayes Elizabeth was welcomed into this world.

dr M hayes

It was this Dr. Hayes that broke the news to us that Don has Parkinson’s disease. It was this Dr Hayes that told us of all the disease you could have this was one of the best. He assured us that we would most likely see a cure in our lifetime. I guess he was kind of like Woody Hayes in the fact that that he could deliver bad news but also give you a silver lining of hope.

So our challenges with Parkinson’s will be most like the classic 10 year war… OSU vs Michigan. Always exciting, weathering ups and downs and hard hitting.  A legendary Woody vs Bo battle. It will definitely be longer than their fight for us because WE WONT GIVE UP! All in the name of Hayes Horton.

bo-woody1