The Question?

“The Question Is Not What You Look At, But What You See.”

~Henry David Thoreau

Sometime progression for Parkinson’s {and other neurological diseases} is marked by how people see you {or your loved one} on a particular day.

We are asked  “How’s Don doing ? Last time I saw him he was struggling.”

or

We hear: “Hey, How’s Don? I saw him and he looked pretty good.”

Those living with Parkinson’s know, it can fluctuate minute by minute or hour by hour.

I find it necessary to not see our family or Don’s path through others eyes but how we want to remember our journey.

Summer 2015

Summer 2015 – Don,  Hadley (7) and  Libby Horton (12)

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Resilient ?

resilientI had to look the word resilient up in the dictionary.  Maybe I didn’t have a clear understanding of this adjective that is frequently used to describe children and how they respond to many of life’s challenges.  When talking honestly and openly about our children and Parkinson’s, we keep hearing “kids are resilient”.  As if to discharge those little bodies with large minds and their journey through life with a parent who has an illness.  Often when you state a worry about your child and how they are processing things, you are dismissed.

“They seem happy.”

“They will be fine.”

“Kids are resilient.”

If I had a dollar for every time I heard this……

Taken from Merriam-Websters Dictionary it reads – Resilient: Able to return to an original shape after being pulled, stretched, pressed, bent, etc..

I personally have a visceral response when I hear this uttered. My children will never “return to an original shape”.  Their lives have been completely altered.  Their hearts pulled and their minds stretched to limits that I truly wonder where the ceiling will be before breaking. Children are not prepared to see someone they love deeply suffer.

Our children are never going to “bounce back”, “rebound” or “recover”.  They will be forever changed from what they witness, see and feel and that’s OK!  It’s our firm belief that they will in turn make this world just a little better because not returning to their original form is pretty awesome too.

We choose to believe they are Thriving: to progress toward or realize a goal despite or because of circumstances

Because their blue print has changed forever, they will have strong voices, be leaders, show compassion, be teachers, and become the best little advocates one could ask for!

thrive

DSC_1107

Children Thriving In The Face Of Adversity.

Human Factor with Sanjay Gupta – Don’s Words

We are honored to be a part of Sanjay Gupta‘s Human Factor series today. I have blogged many times.  They asked to hear the story through Don’s perspective.  Below are his words.

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Don Horton – Father, Coach, Son, Brother, Friend and Parkinson’s Fighter

When I was 48, I was working at Boston College, O-line University, in the pinnacle of my career and raising the family we had waited for so long to start, the last thing I was ready for was being told I had Parkinson’s.  There we were, being warned, that our lives were changing forever.  Maura didn’t blink an eye.  We were both fairly sure that the progression would preclude us.  When we spoke of the disease, we were always positive and stayed strong.  In hindsight, I realize how scared both of us silently were.

My daily activities didn’t change.  I worked, as all coaches do, extremely long days, but looming in the back of my mind was the disease and its’ progression.  To thwart the development I was to stay active, something I had always been; however, I started to notice small changes, and the inability on days to complete the simple tasks I had always done.  That would come and go.  It wasn’t consistent.  One day being able to change a light bulb and the next time I would try, my hands would fail me.  Afraid to admit the decline was beginning, I never mentioned it to Maura, but I know she was watching waiting to step in.

Maura started to notice my good days and bad days, and I would see her instinctively change our plans and schedule.  She and the kids would jump in and help me the same way that my players had each others’ backs on the field.  I fondly remember the loving moments of my two girls helping me in the morning button my shirt, though those moments were bittersweet.  Isn’t it me that is supposed to help them?  My newfound clumsiness was beginning to literally be the elephant in the room, and ironically, the locker room was where it decided to expose itself.  We had just lost a well fought game and had to catch the team plane.  I had spent all of my energy on the field, and there was nothing left my body would give me.  With my hands unable to steady themselves, I couldn’t button my shirt.  A task so simple, mastered at age 5, was now gone.  My weaknesses were completely exposed, and there I was unable to get dressed on my own.  Russell noticed.  He came over and helped me in silence, like Maura or the girls would do.  I didn’t really realize that players had watched this painful process for me.   Players were always a part of our family, but here I realized that now I was a part of theirs.  This moment was the turning point in my life and changed how I was going to address my very existing condition.

My pride was out the window.  The people that I was hoping to make a difference in their lives, were watching it unfold.  Would my players still respect me?  Would I still have a job?  All those fears that I had pushed to the back came flooding to the surface.  I was afraid to tell Maura, afraid that she would think less of me as her husband, less of me as a parent.  Instead they dug in and helped secure my dignity in their own ways.  All the years of preaching perseverance was paying off.

My disease continues to progress despite the fight we rally.  I cannot count the things I’ve lost.  That list is extensive but I prefer to take the lead from another legendary coach, Tom Landry – I’ve learned that something constructive comes from every defeat – and now, I am blessed with the things that I have gained.  My path may have changed course from where I started, but I am grateful that it has not hit a dead-end.

Our Toothless Wonder

Simple life changes can seem monumental.

We have had quite a few ups and downs and the best way we know how, we try to maintain steady.

However….

Our youngest lost her first, whiter than white, tooth and I have been in a tail spin ever since.  Her age of innocence giving way to the right of passage of growing up, one pearly white at a time.

She was overjoyed from the first wiggle. Teasing it everyday. Hoping against all hope that it would fall out soon – so she could securely tuck it under her pillow case with a note.  A note about how long she has “waited” for this moment. Coupled with a thank you and promises that she will maintain all her teeth the same way.

Dear Tooth Fairy,

That precious smile, now exaggerated cuteness, with the hole front in center, almost never came to be.

That smile.....so glad we did!

That smile…..so glad we did!

Don and I struggled with fertility for 4 years after the birth of our eldest.

In Vitro Fertilization and Parkinsons are two words that are rarely combined. In the later part of my 30’s we were dealing with both issues. After being gifted a child and realizing we could maybe do this “parenting” thing, we attempted for another. We tried…insert failure…. and tried…..insert disappointment ….. and tried…..insert grief……and tried….insert devastation. What was wrong with us (really) me? How could I be a failure at something that we waited for the “right” time to happen? Immediately I learned the true meaning of the gift. After four late stage miscarriages we dove in to the science of baby making. Being Catholic, this was something we never discussed. My sweet mother, by all terms, gold medaled in the olympics of childbirth. She conceived 12 children. So how could I struggle?

The science of it all wasn’t quite adding up either.  In the midst of our third attempt at IVF, we sat in a neurologist office, just after a reproductive appointment, and heard, for the first time, the word Parkinson’s.  Don stopped in his tracks, understandably, immediately questioned the doctor about having another child.  His quote was “You have to believe there will be a cure in your lifetime.  If it were me, I would still try”.  That cycle failed- we heard, screaming louder than ever, the words again. “I am sorry you’re not pregnant.”

You would think that would have been game, set match.  Most people said to take joy in the family we already had and count our blessings. BUT something so powerful propelled us to keep pushing forward.  Most would believe that some higher being was trying to tell us something. Given our new challenge, progression of the disease and future uncertain, we thought… no. Really, truth be told, we thought ……hell NO!  We will move forward. We will preserver.  We refused to live scared. Then after many long discussions we added another reason to keep trying. We wouldn’t want Libby to have to deal with Parkinson’s by herself.  That seemed like a lot of pressure.  So, with the odds stacked against us, we tried again.  Don at this time had moved to Raleigh to begin his tenure at NC State.  Libby and I stayed in Boston, filling our days with doctor appointments, blood checks and ritualistic self injected IVF shots.

It was finally time for the “transfer”.  We had already been down this road before, with hallowed results, so I told Don he needn’t travel for the procedure.  Understandably, I had prepared us for more of the same. The disappointment was routine at this point.

The doctor implanted two fertilized eggs and the wait game continued.

This time, we heard there WAS a viable heartbeat.

Haddie Hospital

Faith in all good was restored.

When that toothless smile entered the world, we had more hope than I could ever put into words.  In the face of the unforeseeable things that were happening, we had a beacon of light and love. United together, an unbreakable bond,  Horton’s.  For those of you that haven’t met us, 4 people who will not let our lives be defined by anyone or disease.

and…… when Hadley asks about how it is she came into this world, we exclaim with the most guttural sincerity, you couldn’t have been wanted more.

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.

 

James Brown, Russell Wilson, Johnny Bench and Don Horton- Real Life – Real People – Real Solution

Watch! http://www.cbsnews.com/video/watch/?id=50150438n

Thank you James Brown, Russell Wilson and Johnny Bench

Thank you James Brown, Russell Wilson and Johnny Bench

Diagnosed with Parkinson’s disease, college football coach Don Horton struggled to button his shirt after a football game. The situation inspired his wife to start MagnaReady, a company that makes shirts that are buttoned by magnets. James Brown reports on how the shirts are helping people with disabilities.

Sleep Baby Sleep

Sleep Hadley Sleep!

The wonder her dreams are filled with.

The peacefulness of a child sleeping.

Mom mistake number 1 in parenting was made the first week Libby came home from the hospital. The blunder pediatricians warn and clinics are devoted to. The one where, at the library a vast section of parenting books are indexed on; how to avoid, solve, terminate and demystify.  Ring a bell? If so, you know the name Dr. Richard Ferber and my mistake…..sleeping with your child.

It began quite innocently and seemed so natural.  There was this new little life that we were responsible for. How could I close my eyes and sleep without her by us? What if she needed something and I didn’t hear!?  So, in one room there stood a beautiful new pristine white Bratt Decor crib and the other, a bed filled with 3 bodies.  At her 1 year check up the doctor declared “You have become Libby’s pacifier” and urged us to stop. I made an attempt to put and end to it but she sat there screaming, to the point that she made herself sick and I caved. It wasn’t worth it to me.  Four years later, we were welcoming a new blessing and the biggest transition was getting Libby ready to sleep on her own while we made the number 1 parenting mistake …..again.

Libby and Hadley are completely different as most siblings. From their demeanor, to their likes, fears and sleeping habits.  Libby lays there peacefully, in one spot, always on her side, ready to tell stories, share her day, say her prayers and close her eyes. In the morning she almost always in the same position.  Hadley the complete antithesis. She is never ready to surrender for the day! A ball of energy. Afraid if she closes her eyes, for just one moment, she may miss something. Even while sleeping, her body is constantly in full running motion.

I never gave much thought about how my children slumber until Don’s Parkinson’s diagnosis.  Don was a crazy sleeper and dreamer, always experiencing a game or practice in the middle of the night. Many times I was woken to a play being relived and I was a collateral practice dummy.  I attributed his sleeping habits to lack of it.  Coaches work non stop.  Watching and re-watch film until the wee hours of the morning.  So, it was natural to me that he couldn’t turn the switch off.  While pregnant with Libb, in the black of night, I was awoken to  Don “going for a ball” and “we” were in the way.  Many nights are spent playing musical beds because of this.

Then I read one of the first warning signs of Parkinson’s is a failure of  “muscle control” system to work during REM sleep. People in the early stages of Parkinson’s disease may have unexpected movements and act out their dreams during REM sleep. They may jump out of bed, kick, punch, jerk or moving ballistically during REM sleep, at a time when movements are usually suppressed. This sign may appear eight or more years before other Parkinson’s symptoms develop – and it may be the first sign a patient has. Then it all started to make sense.

Someone recently asked me if I would have the children genetically tested to which I responded adamantly no, for a variety of reasons.  It deeply worries and haunts me after watching Hadley sleep that she is more like her father than just her features and temperament. At night, when I start down the path of terrifying thoughts that our girls may have to face Parkinson’s in their future, I just look to the right, see that sweet baby face, listen to her breathe and say a special prayer, just between me and God.

Interview With Cafe Yak

SPOTLIGHT ON MOM ENTREPRENEUR: INTERVIEW WITH MAURA HORTON, FOUNDER OF MAGNAREADY

MagnaReady shirts offer ease of dressing to people with limited mobility. They are now making life easier for a larger group of people than their inventor, Maura Horton, originally anticipated. She started the company when her husband, a renowned football coach, was diagnosed with Parkinson’s disease and had difficulty getting dressed independently. With nothing like this currently existing on the market, MagnaReady shirts do not skimp on quality, and offer a dignified way of dressing for those with limited dexterity. This mom of two is a jump-starter, an optimist and a hard worker. She used her previous clothing designer experience, found an investor and a supplier and created a product that is rapidly taking off. I talked to Maura Horton about MagnaReady easy shirting, family influences, business advice, possibilities for a cure and more in this interview.

 

YOU CAME UP WITH THE CONCEPT FOR MAGNAREADY WHEN YOUR HUSBAND WAS DIAGNOSED WITH PARKINSON’S DISEASE. WHAT WAS THE FINAL MOTIVATION TO MAKE MAGNAREADY HAPPEN?

When my husband came home after a football game, his energy gone and said it was a hard day. I thought he was referring to the loss of the game but he said a player helped him button his shirt and he was embarrassed. There haven’t been many challenges with his disease that I am able to help with but this was one change I could help him with.

DO YOU HAVE A BACKGROUND IN DESIGN OR SEWING? HOW DID YOU MAKE YOUR FIRST MAGNAREADY SHIRT?

magnaready blue shirtIn my previous life I was a children’s clothing designer. After having children I stayed home. I had been out of the industry for 8 years. I created my first prototype with a local workroom in NY. I started the process hoping to convert my husband’s existing shirts from button-ups to magnetic, but because of the way they are manufactured that was impossible. So off to plan B!

WHO DO YOU SEE AS YOUR COMPETITION?

No one yet! Velcro closure shirts/clothes is all that has been on the market. I ordered a Velcro shirt for my husband as soon as he had his first challenges with limited mobility in his fingers. The shirt was thin and the fabric fibers got stuck in the Velcro. I knew that there had to be a better option.

WHAT REACTION DID YOU GET FROM YOUR FIRST BUYERS? DID YOU DISCOVER NEW AUDIENCE OVER TIME OR HAVE THE BUYERS BEEN CONSISTENTLY THE SAME?

The reaction I get is at times overwhelming. I ask on the MagnaReady website for people to share their story. They have come back with such a variety of reasons that people are seeking this solution out. All are touching. All to help restore dignity and independence into their (or their loved ones) daily routine. Some have Parkinson’s but most do not. I never believed how many groups this product would bring relief to from Alzheimer’s to Arthritis to Stroke and Wounded Warriors. It’s overwhelming and great now to see returning customers!

HOW MUCH TIME AND CAPITAL DID IT TAKE TO GET IT OFF THE GROUND FROM THE ORIGINAL CONCEPT?

Under $100,000 to date.

From concept to product launch has been about 4 years- that includes patent times.

HOW DO YOU ENSURE SHIRT DURABILITY FOR DRY-CLEANING OR LAUNDRY, CONSIDERING THERE ARE MAGNETS?

magnaready white shirtQuality was my number one driving force. I wanted something I would wear. The manufacturer that we use also produces for a well-known high-end shirt company. I am lucky they would take on my project. Laundering was number 2 – many resources and research went into the correct product to achieve this goal.

HOW DO YOU MANAGE RUNNING YOUR OWN BUSINESS WHILE BEING A MOM? HOW DO YOU MANAGE YOUR TIME?

I try very hard to arrange my day so that when they are home I am present in the moment with my children. I am an early riser, thank goodness, and seem to get many things accomplished before the light of day.

WHATʼS BEEN THE MOST CHALLENGING MOMENT WITH THE BUSINESS SO FAR? WHAT LESSONS DID YOU LEARN?

Challenges thus far, to be honest, pale in comparison to what my husband deals with on a daily basis. I don’t think thus far we’ve hit one that we can’t overcome.

WHAT WAS THE MOST SUCCESSFUL DAY FOR MAGNAREADY? WHERE DO YOU SEE IT IN THE FUTURE?

There isn’t success for me with out a cure. So as a family and a company, we will work diligently to help bring awareness, compassion and understanding. I can only hope someday that Parkinson’s outward symptoms will be as accepted as a beautiful bald-headed cancer survivor is now accepted!

WHAT ADVICE WOULD YOU GIVE TO MOMS THAT WANT TO LAUNCH THEIR OWN BUSINESS?

Dive in! Be fearless! If you’re on the right path many things will happen organically.

HOW DID YOU HANDLE YOUR HUSBANDʼS DIAGNOSIS AS A FAMILY?

As a family we have refused to let it control us. We only had 1 daughter at the time of his diagnosis and were struggling to have another. We couldn’t imagine an only child having to deal with the diagnos on her own later in life. We made a conscious decision to have a second child. Don asked the doctor if there was any reason to not proceed with the planning of our family, the doctor said no- because we all need to believe that there will be a cure in his lifetime. We decided then that we wouldn’t let the disease define our family.

ON YOUR BLOG YOU TALK ABOUT COMING FROM A LARGE FAMILY. DO YOU TURN TO ANY OF THEM FOR ADVICE?

Yes. I often consult with my father. He is a great leader and successful entrepreneur. He worked for 7UP and decided to venture off on his own, creating his own distributorship. His fearless style leads me daily.

DO YOUR HAVE OTHER PRODUCTS FOR LIMITED MOBILITY IN THE WORKS?

Yes. We are launching children’s coats with the same technology. Limited mobility for many children is due to finger dexterity, young children just don’t have the control yet over their extremities to be able to use these complicated closure systems. Someday they will conquer buttons, snaps and zippers, but in the meantime MagnaMini will make getting ready to get out the door a little easier. And, being able to do up their own coat makes children confident when they achieve this milestone of growing up.

We have also secured the patent rights to the same technology for patient/hospital gowns.

IF I ASKED YOUR KIDS, WHAT KIND OF MOM YOU ARE, WHAT WOULD THEY SAY?

Not sure! Having two daughters I hope they would say that I am a strong but loving leader.

Learn more about Maura Horton and MagnaReady at magnaready.com.

Interviewed by Anna Harris.

 

Kindness Does Exist

Stumbled upon this today.  I don’t think Don has talked to Coach Etch for years now, but some, in this brotherhood of athletics, are truly kind.  Thank you Coach for thinking of us and sharing our story.

Be Well!

Always Brothers In the Athletic Fraternity

Always Brothers In the Athletic Fraternity

 

Worthwhile Departure for You…Sent Thursday, June 20, 2013

 

I was doing some

research about a

football coaching

acquaintance, & i

came upon these two

web pages:

http://money.cnn.com/2013/04/15/smallbusiness/parkinsons-dress-shirts/index.html

...some folks say:

"Necessity is the

Mother of Invention..."

...i was aware of

Don's battle w/

Parkinson's, but

was trying to learn

what he's doing

lately:

https://magnaready.wordpress.com/tag/don-horton/

...This was somewhat

of a departure from

what I generally

share w/ You, but i

thought You may get

something special from

either, or Both...

...i have

 

Dear Dad,

Sometimes you read something that makes you pause.  I often wonder where our 10-year-old gets her wisdom.  I believe she may just have an old soul.

Father - Daughter

Father – Daughter

Libby’s Fathers Day letter closed with……I couldn’t wish for a better one.  I love you with or without Parkinson’s.  You’re the same in my heart.