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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Through A Different Window

~ Bless those who see life through a different window

and those who understand their view ~

Be who you want your children to be

Independence Day 2015

Children Of Parkinson’s

Never Lower Your Expectations Of Kindness

There are elements of Parkinson’s Disease that are rarely discussed. When outsiders think of the disease, their mind often flashes first to the always-lovable Michael J Fox and his great demeanor and positive outlook. Optimistically, we prescribe to his Always Looking Up mentality, but in reality, there is a whispered side of Parkinson’s that those in the community live every day.

Parkinson’s Disease is the world’s second ranking neurological disorder, yet other than the textbook tremor, many people are unfamiliar with the symptoms. It would be a great case study to examine how people who are unaware of the disease can treat a person who has the disease. When we go out as a family, we notice these people. We feel the stares, hear the loss of patience, and see the rolling of the eyes. We can imagine what is whispered. We’ve heard questions asked if he is drunk. We listen to the obligatory, “I’m sorry” once we disclose the diagnosis to new acquaintances. We are aware of both friends and strangers relief, thankful it’s not them.

As parents, we witness our children’s response as they look down to the ground, awkwardly wishing the moment would pass. Children are best at observation. They quietly read body language, posture and tone. They understand differences. They are forever processing. They are honest in their assessments and when they relay things back there is often no filter.

Our youngest daughter innocently asked, “Why do they think dads unseen” and in a recent journal entry she wrote
” People tret Dad like hes invisible and think he is werd. Like when people see him they make mad and bad faces😟”

“People tret Dad like hes invisible and think he is werd. Like when people see him they make mad and bad faces☹”

It pains my heart that at seven she understands that people glance over her dad, but yet she can’t process it. Here’s the man who she loves and thinks is amazing, but at the same time, struggles with others recognizing that there is something very different or strange about him. He has had Parkinson’s her whole life, and she knows that his disease at times can be limiting and hard. She is innately kind and patient, but each instance questioning why others find this difficult to do. Through her eyes I see the disconnect.

I don’t have an answer for her.

I could tell her ~ It’s ignorance. 
I could tell her ~ They don’t know better.
I could tell her ~ She was wrong and excuse away the behavior.
I could tell her ~ They are just having a bad day.
I could tell her ~ It doesn’t matter.

But we won’t

It (he) does matter.

Ignorance is not an excuse.

In 2015, regardless of what someones ailment is, they should know better.

She does understand and their behavior is wrong. What she is seeing is real – insensitive, unkind, inexcusable, thoughtless people are among us. She watches her father fight everyday to do things he once took for granted, from small things such as buttoning a shirt and writing to much larger things like walking, talking and keeping his balance steady. She sees him. He is not invisible. His love is as real as his challenges. He’s not “werd” (weird). He’s just her dad.

It’s a shame to say that people’s perceptions of us can affect our daily lives; that negativity and neglect could shape our children. Our goal is to make sure our girls never lower their expectations of how they should be treated and vice versa. Circumstance has taught my girls strong lessons, and I am grateful for the virtues that they now hold.

Treat others how you wish to be treated yourself.
No one is irrelevant.
Kindness matters.

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.

MagnaReady and FOX News – Jonathan Serrie

Jonathan Serrie sporting MagnaReady

Jonathan Serrie sporting MagnaReady

MagnaReady with FOX News and Jonathan Serrie

Magnetic shirts offer independence to people with disabilities

Read more: http://www.foxnews.com/health/2013/07/04/magnetic-shirts-offer-independence-to-people-with-disabilities/#ixzz2Y6cCvO7s

They say necessity is the mother of invention. And in the case of former NC State Football Coach Don Horton, it was a desire to maintain independence while living with Parkinson’s disease that inspired his wife to come up with an entrepreneurial solution.

Maura Horton is CEO of “MagnaReady,” a line of dress shirts embedded with magnets so that the wearer doesn’t have to fumble with buttons.

She says the inspiration came four years ago when her husband returned from a game feeling embarrassed. The disease had affected his hand movement so much that he had to ask one of his players to button his shirt.

“It was humbling,” Coach Horton said.

The conversation spurred Maura Horton into action.

“There were a lot of challenges or changes he might have been going through that I couldn’t help,” she said. “But that was one I thought I would try to get to the bottom of it.”

She used her skills as a former children’s clothing designer to create high-end shirts with buttons, and button holes, that were purely decorative. “Buttoning” the shirts is as simple as lining up the magnets and hearing them click.

“They made a tremendous amount of difference,” Coach Horton said. “Having the confidence to get done what you’ve got to get done and what you want to wear.”

More recently, Don Horton stopped wearing magnets to avoid interference with a pacemaker-like device he received to deliver electronic stimulation to his brain. But the deep brain stimulation (DBS) therapy has improved his mobility and he is once again able to button conventional shirts.

Meanwhile, Maura Horton, who started selling her “MagnaReady” shirts online in January, has seen her home-based office flooded with orders — not only for people living with Parkinson’s, but arthritis, stroke and even war injuries.

Read more: http://www.foxnews.com/health/2013/07/04/magnetic-shirts-offer-independence-to-people-with-disabilities/#ixzz2Y6afgEER

TipToe Through The Tulips

Parkinson's Awareness Symbol

Our Personal Parkinson’s Awareness Symbol – Haddie: Age 5

As Parkinson’s Awareness Month comes to a close, I wanted to share our families tribute to this Parkinson’s symbol.  The elegant long-stemmed, tea-cup shaped blossomed tulip is the universal sign for Parkinson’s.  Last fall Hadley and I planted our “crop”.  Paying tribute to her father, hoping for a few to be spared by squirrels, take root and bloom.  We hadn’t noticed any signs that the fruits of our labor were successful until very recent and then our eyes were graced with the most spectacular sight we could imagine.  Not known for having a green thumb as both sets of grandmothers do, we were overly delighted.

The story of the Parkinson Tulip began in 1980 in the Netherlands when J.W.S. Van der Wereld, a Dutch horticulturalist who had Parkinson’s disease, developed a special tulip. Van der Wereld named his prized cultivar, the ‘Dr. James Parkinson‘ tulip to honor the man who first described his medical condition and his contributions.

The three petals symbolize love, hope and fight.  So this spring as you tiptoe through the tulips and admire the beauty of these perennials, please know there are millions fighting this disease, many more families and friends hoping for answers and all in the name of love.  Maybe, just maybe it will inspire you to plant these special tulips for someone you love too.

Parkinson's Awareness

Parkinson’s Awareness

A Childs Awareness of Disability

Siblings

Sibling Love

Disability is a broad word.  We live with one. Parkinson’s. And by “we” I mean my husband who battles it everyday, myself and our two sweet children.  It means different things for both of them.  My oldest in someways is the lucky one. She has had many more care free experiences with Don prior to his diagnosis.  When I remember her childhood I have vivid images of Don pushing Libby in her Reebok jog stroller to parks in Boston. Going down, what seemed to be at the time, a huge slide in front of her just to catch her- not an easy feat for a 6 foot 4 man. Picking her up when she fell or tossing her in the air for a thrill.  Sitting on the floor playing Polly Pockets for hours. Trying to teach her golf, basketball and how to really throw a football-  “a girl with the proper grip will impress many people in life” he would say. We had four years of living in this relative bliss.  Then the diagnosis- which we thought didn’t REALLY apply to us.  His progression will be slow.  He’s in such great physical health. For the love of God, he works out everyday for two hours – sometimes a contention in our marriage.  Eats healthy.  If anyone could fight this it would be him.  It cant happen to us.  It will be a long time before the outward signs start to manifest.

Hadley Ellison- our spitfire

Hadley Ellison- our spitfire

Then we had daughter number two. – a sure spitfire!  We made a conscious decision to have another child knowing that Don has Parkinson‘s.  Truth be told after his diagnosis I was even more driven to try to have a sibling for Libby.  I couldn’t bear the thought that an only child would have to endure the burden of the disease alone.  Hadley’s  life with her father has been great just in a different way. Any time she gets is appreciable and looked at as a gift.  Don plays Polly Pockets with her as well.  He’s interested in her basketball skills and wants her to learn the proper way of handling a football but the innocence of her youth seemed gone before she was born.  For all of us dealing with big issues, it sometimes seems unfair.  My 43 year old brain has difficulty dealing with Parkinson’s daily. What can this 5 year old be thinking?

Map of Disablity

Map of Disability

I don”t have a map for how I am to handle this with my children. Often I lay awake at night and second guess how I do, but the other night I was proud. My oldest recently went ice skating at night with a friend and her family.  She came home late.  I asked- “Was it fun?” “Yes mom -a blast!”  “I’m just really tired.  Can I go to bed?” I could tell there was something else on her mind.  Night is our “talking” time so I put the youngest to bed and then went to Libby’s room.  We started our chat… “What was the best part?” – a question I always ask to find the light in her eyes.  “Mom, a lady there fell.” I reassured her people fall all the time.  “No mom she REALLY fell. I think she broke her arm.”  Again reassuring her it will be alright.  I replayed a story that my mom had the same type of accident just on roller skates.  It landed her in a cast and time with a physical therapist. “MOM (clearly I was missing something) the ambulance was there and I think she had a disability.”  Stopped in my tracks I decided I needed to listen closely to the answers of the questions I was about to ask.  “How could you tell she had a disability?”  “Mom, I could just tell.”  “Did you see it happen?” “No.”  “Did you try to help?”  “No mom. I couldn’t and she didn’t have anyone there with her and it looked like it really hurt.” “Did you think she was scared?”  “She had to be. Mom, I’m scared.” “Scared about what?” “I’m afraid that something might happen to dad and we won’t be around.  No one should be alone mom.”

When my head hit the pillow that night I was dismayed about my inability to calm her fears because I cant promise her anything.  I can’t promise everything is going to be ok.  I can’t promise he wont fall.  I can’t promise I wont get sick- a questions she asks regularly.  I have no promises for what lies ahead for us.  We don’t know what will happen- we have to expect the unexpected. But I do know we can promise we will always be there for her dad.  I was  proud that my daughter understands that there are people who may stand out to her for different reasons in this world and that NO one should be alone in their fight.

Together Forever

Together Forever