GO DAD….. GO!

Whats the saying….. apple ….. tree?

the apple does not fall far from the tree

  1. A child grows up to be similar to its parents, both in behavior and in physical characteristics.  [quotations ▼]

 

or in this case like father, like daughter

We spent the holidays slightly different this year ~ with a bad fall ~ a 7 day (partially paid through medicare)  all-inclusive trip to the hospital.

Don’s morning routine often consisted of placing quotes, reflections and hopes in the girls lunch boxes.

He sometimes references a treasured book someone once gave him because his thoughts aren’t always as clear

however, his optimism is.

Had ~ Be A Leader Love, Dad

Had ~
Be A Leader
Love, Dad

Our youngest thought just like her father….. On his first full day at the hospital she asked “Mom can you place this on dads lunch tray today?”

hadley dad letter 12-15

You can do anything you put your mind to – Your daughter Hadley ❤️

The lessons we teach are often non verbal. Love is constant and encouragement can  come from a sweet 8 year old child if they have witnessed it in their lifetime.

Children truly don’t think there isn’t anything their parents can’t do~ Hadley and her dads battle with Parkinson’s is no exception. I think deep down this coach is probably proudest that he has a coach-able kid… who might just one day, follow in his footsteps…. whether it’s on the field, court or in life.

a side note* “the p.s. is “you can draw muscle men if you want”. Something he does when she’s coloring with him….  You are never too old or too masculine to color with your kids ❤️

p.p.s. the oldest gets these too

Libby - Be Quick But Don't Be In A Hurry Love, Dad

Libby – Be Quick But Don’t Be In A Hurry
Love, Dad

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MIT’s Open Style Lab – Mentorship

An amazing program that I am honored to be contributing to is MIT’s Open Style Lab, the brainchild of MIT grad Grace Teo and Brown University medical student Alice Tin.  A strategic platform that focuses on new wearable technology for those with limited mobility.

Helping bring visionary designs that aid people with limited mobility and dexterity to production is the ultimate goal.  What I absolutely endear about this program is that it brings together 3 areas of focus for 1 greater goal.  To unify the occupational, engineering and textile world under one umbrella in efforts to create a level platform has long been overdue.  I am proud to be a part of the process.

Below is an article published for Boston Magazine.  I believe it sums up the program nicely.  For more information, amazing stories and updates, check out Open Style Lab.

“The greater need besides being able to [dress] independently is being able to look like everyone else, or look how you want to look,” Horton says. “Instead of standing out because of your disability, that’s one way that we should be able to all stand on a level platform.”

http://www.bostonmagazine.com/health/blog/2014/08/04/mit-open-style-lab/

 

Students Create Adaptive Clothing at MIT Open Style Lab

Engineering, design, and occupational therapy majors team up to design apparel for people with disabilities.

Barbara and her Open Design Lab team. Photo provided.

After a series of fractures left her in unbearable pain, Barbara Harrison elected to have below-the-knee amputation. While she knew the surgery would change her life, she wasn’t prepared for the small changes that nobody thinks about—like how clothes will fit.

Harrison, a Winthrop resident, now has a prosthetic leg, and the process of getting dressed in the morning is more difficult. That’s why a team of college students at Massachusetts Institute of Technology (MIT) are working together to design a new kind of pant that can be functional for those with disabilities.

Creating apparel that is both functional and aesthetically-pleasing is the whole idea behind the MIT Open Style Lab (OSL), a new 10-week summer program where students design clothing solutions for people with physical disabilities. Funded by university grants and corporate sponsors, the program is the brainchild of MIT grad Grace Teo and Brown University medical student Alice Tin.

“Clothing is social capital. Often [clothing for people with disabilities] falls under the functional end of the spectrum and doesn’t look cool or stylish,” Teo says. “What we’ve noticed is even if you have the best intentions, the best product, the most helpful technology, if it doesn’t look great, people don’t want to wear it.”

OSL fellow Alex Peacock's sketch of a glove that can be worn by his client who has fisted hands due to a spinal cord injury. Photo by Kira Bender.

Hoping to change this trend, Teo and Tin have recruited 24 engineering, design, and occupational therapy students to this summer’s inaugural OSL program. The students work in teams of three, with each team assigned to one of the program’s eight clients—all of whom, like Harrison, have a physical disability. In the early weeks of the program, which began in June, teams met with their clients to identify specific clothing challenges. Now, students are focused on creating prototypes of their designs under the guidance of expert mentors.

Maura Horton, a professional designer, is one of them. Though her background is in designing clothing for children, Horton’s recent efforts have focused elsewhere. She is the creative force behind MagnaReady, a line of dress shirts for seniors and people with limited mobility that uses magnets instead of traditional buttons. She designed the shirts after her husband, then a 48-year-old college football coach, was diagnosed with Parkinson’s Disease—a debilitating condition which left him unable to dress himself.

“When my husband was first diagnosed , I looked at the [adaptive clothing] choices that were available online. It frightened me,” Horton says. “What I was seeing online was not something I wanted to replicate with my family. They were not quality choices.”

Horton says one of the most important aspects of her “magnet-infused” shirt design, which her OSL students use for inspiration, is that it looks like any other dress shirt available in stores. Unlike other adaptive clothing, it does not differ in appearance from traditional clothing in an obvious way.

“The greater need besides being able to [dress] independently is being able to look like everyone else, or look how you want to look,” Horton says. “Instead of standing out because of your disability, that’s one way that we should be able to all stand on a level platform.”

As founders of the OSL program, Teo and Tin share Horton’s sensibility. The ultimate goal of the program, they say, is to make “the distribution of clothing more accessible.”

“Everyone has a range of clothing to work with because [clothing is] a channel for self expression. For populations with disabilities, that vocabulary is limited,” Tin says. “What we’re doing with Open Style Lab is to reintroduce diversity into their wardrobe.”

Student teams will reveal their final clothing prototypes at a public presentation at MIT on August 16 from 3:30 p.m to 5 p.m. The prototypes will also be presented during weekends in October at Boston’s Museum of Science. For more information, visit openstylelab.com

Grace Teo and Alice Tin try on goggles that mimic eye diseases at the MIT AgeLab. Photo by Laura Hanson.

3 Cheers For A Cure!

Don and I are celebrating our 21st year of marriage.

Not a typo.

Really, it’s been 21 years.

We’ve never been a couple to exchange extravagant gifts.

A few years back I received one gift that I will always cherish.

You see, my mom never throws anything away.  Not a hoarder but a complete sentimentalist.  Unbeknownst to me she provided Don with a piece of my past that she thought he “might like”.  A throw back Thursday treasure.  A cheerleading picture (pre photoshop days!).

Always Your Cheerleader

Always Your Cheerleader

 

Don, in turn, took my brace faced picture, purchased a side by side frame and inserted his playing days football picture.

 

Don - Wittenburg Tiger Days

Don – Wittenburg Tiger Days

Completely sweet.

Attached a note that read …….

We are quite the pair. Meant to be. Always by my side. Love – Don

Couldn’t agree more. I can’t find my pom poms or do a herkie any longer but I am cheering him (and many others)  on now, in more ways than one.

B E A T  P A R K I N S O N ‘ S ! 

Until there is a cure we will be the change.

 

 

 

 

 

 

Do You Hear What I Hear?

I participated in a radio show for the National Parkinson’s Foundation South Palm Beach Chapter.  In closing the host, Jeff Dowd, asked – “What is one piece of advise you would want listeners to take away from our time today?”

My answer was simple.

DSC_0057

Because you are important…. I listen.

I said  and truly believe – “I hope everyone would be open to listen.  Listen to your loved ones. Hear what they are saying verbally but especially non. It’s often what goes unsaid that stays in our hearts longer.”

You can only affect change by listening.  Change in perception, change in environment, change for the cause and most importantly change for their quality of life until there is a cure.

I’ve seen a glance down when something is difficult, feelings of I use to be able to do this bubbling up.

We hear comments by others about his progression while he is standing next to us, as if his hearing is impaired and he isn’t able to understand what is being said about him.

We notice looks and hear sighs when someone doesn’t have patience with his slower pace, as if to say you don’t matter.

We listen as he has a conversation with someone and the person he’s speaking with nods and laughs, as if they understood what he was saying but we know, they have no idea.

All things we take in and process. All things attempting to create defeat. Defeat of a soul. Defeat of spirit. Defeat of your accomplishments. Defeat of human life.

You can’t let that happen because the disease takes away enough.

We have accepted that we can’t completely win our battle against Parkinson’s, only keep it at bay for as long as possible, but, we can defeat ignorance.

So listen, and when you see a shift in you loved ones attitude, rise to the occasion and when you hear ignorance, challenge it.

 

We are in this together!

We are in this together!

Until there is a cure we will be the change.

 

 

 

 

 

 

 

Oh What A Night!

We traveled as a family for the first time to the wonderful city of Seattle.  To attend the American Parkinson’s Disease Association Magic Of Hope Gala. Don was being honored.   What an incredible time for us to come together and share our story, journey and hopes for the future.

The Magic of Hope Gala 2014 - American Parkinsons Association

The Magic of Hope Gala American Parkinson’s Association

We were lucky to meet many warriors of the disease who are valiantly fighting as well. We were happy to help raise awareness and money for programs and research that we believe will help those afflicted.
Copyright 2014 Garet Munger

Copyright 2014 Garet Munger

We were humbled that Russell Wilson would take a moment to help support our cause by speaking and donating.

Attached is a clip from his tribute to Don.

I know Don was honored to hear Russell’s words but honestly, upon reflection we both agreed that he had given a gift to the Parkinson’s community and our family – especially, our girls.

As the disease progresses and the father they once knew is harder and harder to see, they will have this small token from Russell.

Helping them remember what a difference Don made in his career as a coach and human being.

Once again, thank you Russell.
Until there is a cure we will be the change.

 

Live Your Life Without Boundaries!

I am humbled to share Justin’s story and his company UNlimiters.  He has created a wonderful resource center to help so many.  Please take a moment to watch his video but more importantly to hear his words

Watch here

 

Image

 

 

Felling like an outsider is not acceptable in today’s world! WE should all feel like we can do what everyone else can.

 

 

Image 1

 

Born with Cerebral Palsy, UNlimiters founder Justin Farley has always had a passion and determination to live an unlimited life in big ways, and in small ones.
For example, because his Cerebral Palsy causes shakiness and unsteadiness in his right side, Justin always struggled with buttons and fine motor skills. But with the help of the MagnaReady shirt, Justin can dress like the business professional he is.

http://www.unlimiters.com/default.asp

I am happy to be a small part of his journey. 

MagnaReady and Michael J. Fox Foundation Commitment

many ask me personally “What my home run is for our company” My answer is simple.  There isn’t one until there is a cure.  Therefore, for the month of April – Parkinson’s Awareness Month, we are donating a percentage of each purchase to the michael j. foundation to help fund a cure.  I truly belive we are all in this together!

 

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Below is the Blog that was posted on behalf of MagnaReady® and MJF and  teamFox

MagnaReady Supports Team Fox for Parkinson’s Awareness Month

Posted by  Maura Horton, April 02, 2014

MagnaReady Supports Team Fox for Parkinson's Awareness Month

Editor’s Note: With her portion of proceeds campaign launching this April, we asked Team Fox member and MagnaReady creator Maura Horton to tell us the story behind her innovative magnetic button down shirts.

“Mom, will you button my shirt?”

As a mother of two young children, this is a question that I have heard repeatedly over the last 10 years. When one child mastered the skill, the second began to verbalize the same basic need. Somewhere in the mix, I started hearing the same pleas from my husband Don. As the limited mobility effects of Parkinson’s began to set in, he was beginning to struggle with this simple task as well.

First, I started noticing that I was ready before Don; something that had never happened in our many years of marriage. I was the one now standing at the bottom of the stairs inquiring, “How much longer?”, pressing him, “We are going to be late!” During our morning routine, I would witness instinctive, honest-loving moments from our two girls, jumping up on our bed, using it as a ladder, to help their 6-foot-4 athletic father get ready for work by helping him to button his dress shirt.  I was naive, and thought that this challenge only happened for him when he was in the privacy of our home, not really giving thought to how Don got dressed when we weren’t around. He has Parkinson’s, but we rarely ever talked about the limitations. To admit to the struggle would mean acceptance.

As a college football coach, Don traveled quite a bit with a busy schedule in and out of locker rooms and hotels. The season brings early mornings and late nights, and honestly not a lot of time for small talk in between. However, on one particular night, after coming in from away game, he was anxious to tell me, “I had a hard day.” He repeated and elaborated, “I had a hard day. A player had to help me get dressed to catch the team plane.” Once he spoke of all the particulars I desperately wanted to help him. This was, after all, a man who never complained.

The Hortons with Seattle Seahawks quarterback Russell Wilson
The Horton family with Russell Wilson, Seattle Seahawks quarterback.

I realized in his words that despite the wins and losses on the field, here in this moment, my husband felt defeated. His dignity had been lost, and the simple fact that his body was betraying him was almost unbearable. For over twenty years, I had been on the sidelines watching Don be a leader, inspiring his players to be better players; to be better men. Mentally, I knew he could overcome the changes he was going through and could motivate himself to stay strong and move forward, but physically, I realized, that his battle with Parkinson’s was not going to be a fair fight, and I could see that my husband’s spirit was starting to deflate.

Getting dressed shouldn’t be stressful; living with a disability is hard enough. As I thought through how I could help, the epiphany came, and soon MagnaReady – Stress Free Shirting was born. If there is anything that I have learned from being a coach’s wife, perseverance prevails and something constructive comes from every defeat.

How you can join us this April for Parkinson’s Awareness month:

In our office hangs a sign that says – “Remember Why You Started”. Our mission is simple and MagnaReady is dedicated to giving back to the Parkinson’s community that we are proud to be a part of. So throughout the month of April, MagnaReady is committed to donating 10 percent of every purchase to the MJF Foundation during Parkinson’s Awareness Month.

TAGS: Caring for Someone with Parkinson’s Disease, Team Fox, Getting Involved

Until there is a cure we will be the change.

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.

IMG_1561
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.

Happy Birthday!

When Don and I were dating, some 24 years ago, I would often sit in an office at his alma mater, Wittenberg, waiting for him to “finish one last thing” or make “just one more recruiting call”.  He valued his job but more than anything, he was honored to be called a Wittenberg Tiger. I knew then that I was second fiddle to his career and many young men.  As I sat there and tried to pass time, there was one 8 by 10 picture front and center on his desk that I stared at.  Three men he would pridefully call warriors with tremendous work ethic and mental toughness. Three men that battled day in and day out on the offensive line and in the academic classroom.  Three men in the trenches that helped secure an OAC Championship. Three leaders that showed incredible respect for each other and their teammates. Three people he never could forget.  Eric Horstman, Scott Bowen, Ken Bonner.

Wittenberg Tigers

Eric Horstman, Scott Bowen, Ken Bonner.

As Don move on to new challenges, offices and environments, this picture always remained on his desk.  Even as our life grew, it became surrounded by pictures of our girls and it continued to provide an instant reminder of his roots. When we relocated to Raleigh, Don brought the picture home.  I never asked why but I recall the day he shared the story of these three men he was honored to coach with our girls.  It immediately brought me back to the moment he spoke so highly of them to me.  Explaining that these men played football in the purest sense.  Just for the love of the game. You could feel his sincere admiration.

Then our home was destroyed by fire… a long story for another post…and all of our pictures were scorched.  Years were spent replacing and restoring us whole again but sorting through the charred memories was one of the most difficult things I had to do.  You have the memories stored in your mind but a picture silently recaptures your emotions and transcends you back to that moment in time.   Somethings, we had to accept, would never be replaced.

Don has never been someone who wanted to accumulate “things”.  He is not one that wants the latest toys or technology.  His birthday was coming up and when you love someone who has a progressive disease, the only gift you want to bestow on them is restored health.  Last I searched, I couldn’t find the gift of health.  Once you come to terms with the fact that you are not able to grant or find a cure,  you hope you can give the gift of a feeling.  The pleasurable sensation of what it feels like to not have the disease. A moment in time, a reprieve, a transcended cure of sorts.

Don had reconnected with Scott and Eric this fall.  They were kind enough to take time way from their families, travel and pay us a visit. Don was completely honored to share with them at this point in their lives and reminisce about the days of the past.  I mentioned the picture – not sure if they would even recall it.  Scott relayed that his dad had actually taken it and yes, he was still in possession of it.

So for Don’s birthday this week, with the help of Scott, the picture now proudly is displayed in our home again. A true homecoming of sorts. A momentary cure. A restored reminder of strength, courage and loyalty.  A piece of the past providing fortitude for the future.  Stories of three men that our girls will be able to hear, visualize and learn from.

With the pictures Scott sent, he enclosed a card with birthday wishes.  He signed it “Tiger Up”.

I explained to the girls that this is unwritten “man code”, and really means ~love~

Russell Wilson’s Kindness Leaves A Mark

http://espn.go.com/espnw/news-commentary/article/10375235/espnw-touch-kindness-seattle-seahawks-quarterback-russell-wilson?ex_cid=2014_bnnr_ESPNWTDFY14_OutbrainD_aqsn

The title of the article …. Russell Wilson’s Kindness Leaves A Mark…. we should all ask~ what mark will we leave.  It’s easy to get consumed in our daily lives but I hope we all take time out to better the lives of others- on a super bowl level!

NEW YORK — One day in 2009, Russell Wilson found himself addressing hundreds of students at St. Timothy’s School in Raleigh, N.C.

We Can ALL do great things!

We Can ALL do great things!

The topic was bullying.

At the time, Wilson was the starting quarterback for NC State and a first-team All-ACC selection. Maura Horton, the wife of Wolfpack offensive line coach Don Horton, had invited Wilson to speak at St. Timothy’s because the couple’s daughter attended the school and a friend of the family who worked there wanted to be proactive in starting a dialogue about the harmful effects of bullying.

Courtesy of Maura Horton

Russell Wilson, with the Hortons’ daughters, was invited by Maura Horton to speak to schoolchildren about bullying, which he admitted he had been guilty of.

They all figured the amiable Wilson was the perfect guy to stand up and talk about doing the right thing. What they didn’t know was that he also had a confession to make.

Turns out, Wilson had been a bit of a bully himself.

It sounds hard to believe for anyone who has followed Wilson’s ascension to football’s biggest stage. On Sunday, the 5-foot-11, second-year pro will lead the Seattle Seahawks against future Hall of Famer Peyton Manning and the Denver Broncos in Super Bowl XLVIII.

But Maura Horton remembers watching all the kids that day at St. Timothy’s as they listened with rapt attention to the young man whose ease and openness allowed him to immediately connect with his audience.

“We were surprised to learn what he said,” Horton told espnW this week. “Russell doesn’t seem like someone who ever could have behaved that way. But because of his honesty, the kids were blown away by him.”

Wilson told the students that when he was younger he would sometimes be mean to his classmates on the playground because he thought that would make the “cool kids” like him more. It took a teacher pulling him aside one day for Wilson to realize there was nothing cool about taunting someone.

“You don’t want to act like that,” the teacher said, reminding Wilson that being good at sports wasn’t a free pass for bad behavior. The message: Sports are fleeting, but words and deeds are permanent.

“Your actions stay with you forever,” Wilson told the students, “so you want to make sure those actions are something you’re proud of in the future.”

The Horton family knows a thing or two about Wilson and meaningful actions. To them, he is a man whose awareness and sensitivity changed their lives.

About a year ago, Maura launched Magna Ready, a business inspired by an interaction between her husband and Wilson after NC State lost a road game during the 2009 season. Don Horton suffers from Parkinson’s disease, although he had not told anyone on the team back then. Because of media obligations, Wilson was one of the last players getting dressed that day, and he noticed that Horton was struggling to button his shirt. The team bus was waiting outside, so the sophomore quarterback stopped what he was doing and, without saying a word, buttoned his coach’s shirt.

When Don arrived home that night, he told his wife what had happened. He confessed his embarrassment and felt distraught that a layer of his independence had been stripped away. But an idea was born: magnetic buttons for dress shirts.

Maura Horton sent Wilson a handwritten thank-you note after hearing about his interaction with her husband. She says she believes Wilson’s awareness in the locker room was heightened by what was happening in his own life as he watched his father’s health decline. Harrison Wilson III died in June 2010 of complications from diabetes. Russell then transferred to Wisconsin after his junior season.

“Most players are focused on themselves after a loss,” Maura Horton said. “It was just a brief moment, but his dad was sick at the time, and I think Russell had a higher sense; he was just one of those guys who got it.”

Last summer, the Hortons and their two daughters visited Wilson at his passing academy in his hometown of Richmond, Va. At one point, the conversation turned to hopes and goals, and Wilson said he wants to win four Super Bowls. Unsure why he picked that number, Maura Horton went home and did a Google search, learning that if Wilson someday wins four titles he will tie Terry Bradshaw and Joe Montana as the quarterbacks with the most Super Bowl rings.

During Wednesday’s media availability in New Jersey, Wilson discussed his pursuit of greatness.

“If someone tells me no, I’m going to try to do the best I can to prove them wrong — more for myself than anyone else,” he said. “I’m a self-motivator. I believe that God has given me a sense of leadership to be able to motivate other people, but also myself. I want to be the best one day, and I’m not going to shy away from that. I’ve got a long ways to go, but I think, to be honest with you, God has put me here for a particular reason.”

The way the Hortons see it, Wilson’s legacy is already set.

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