About magnaready

A wife, mother and Parkinson's advocate. My blog is inspired by the lessons our children re-open our minds to when dealing with a loved one with life altering health challenges. Here I help preserve the legacy of their father - pre and post Parkinson's diagnosis.

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 always – 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 ! 

 

 

 

 

 

 

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.

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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.

 

 

 

 

 

 

 

Father’s Day Via Instagram

Instagram is one of those social media platforms that some would say we opened the door too early and allowed our 11-year-old to partake in.  Our concession to this method of communication comes with as many rules and regulations as Obamacare.  One of the caveats would of course be, to monitor her account.  Most of her posts are harmless selfies.

This Sunday when we checked we saw this.

Always be my no 1!

 

An image of her and her dad at a cotillion father – daughter dance earlier in the year.

The picture is precious to me for many reasons

but now, add her comments (minus the spelling errors)

and it is truly priceless!

Libby is at the age when we, as her parents, can be embarrassing for a host of reasons. However, when your dad is not like all the other dads, physically, it seems to stand out.  We are simply, more aware that his Parkinson’s Disease may add to her discomfort or questions from friends.

So, it was refreshing to see her proclaim “no madder” what, he’s her #1 man - for all to know.

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.

 

Small Part Of The World

It’s the end of the school year for our little kindergartener.  Her class recently had a performance at school for the parents where they sang the song

I am a small part of the world.

 I remember our now 11-year-old singing the same thing a few years back and getting teary eyed.
Libby 2007

I have a small dream in my eyes. – Libby 2007

This year it touched me deeper. Was it because I was really listening this time? Or because I could see Hadley, not only singing the words but really believing what she was saying?
Hand In Hand Dreams Combined

I have a small voice ringing clear.

I saw that little body, that we love so much, singing about freedom, dreams – and coming together. For us, part of that dream means freedom from a disease. We are all a small part of the world and together we have nothing to fear.Take my hand.

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But if I stand by your side and you put your hand in mine, Together we can be so strong and bold. – Haddie 2014

I AM A SMALL PART OF THE WORLD by Sally K. Albrecht and Jay Althouse
I am a small part of the world.
I have a small hand which to hold.
But if I stand by your side and you put your hand in mine,
Together we can be so strong and bold.
I am a small part of the world.
I have a small dream in my eyes.
But if I tell you my dreams and if you add yours to mine,
Together we can reach up to the skies.
Hand in hand, dreams combine,
Voice with voice, together for all time.
Hand in hand, dreams combine,
Voice with voice, for all time.
I am a small part of the world.
I have a small voice ringing clear.
But if I sing out for freedom, and you add your voice to mine,
Together we have nothing left to fear.
Hand in hand, dreams combine,
Voice with voice, together for all time.
Hand in hand, dreams combine,
Voice with voice, for all time.
I am a small part of the world.  Take my hand.

 

It’s A Number Game

When you look at yourself as just “a number”, like the 1 million people living with Parkinson’s disease in the U.S..  It’s often hard to think you matter or more importantly, you can make a difference.

MJFF_WIP_MAR5_2

The daunting figure –  3 out of 5 Americans will suffer from a nervous system disease, means that someone you know, love or possibly yourself will be in this statistic.

It’s when you start looking at specific numbers that are generated that you realize people do care and had the forethought to implement actions to bring relief.

A few numbers :

$70 Million dollars was given out by The Michael J Fox Foundation alone in 2013 to new and promising research.  They funded more research in 2013 than in any year prior!

Thanks to the amazing generosity of donors, 5.9 is the total dollars (in millions!) raised by Team Fox members alone in 2013 to help speed a cure for Parkinson’s disease.

Everyone can make a difference, even just one person.

The number my children display to help make a difference in their dads day is – 7.

She shoots.. she scores... a smile from her dad

She shoots.. she scores… a smile from her dad

You see, back in the day, his number, “lucky” number, was 70. Many a days were spent cloaked in a jersey, representing a team as #70.  That was during a time when your name was never on the back of the jersey because you were part of a team. As Don relays, no one name stood out, as a team you all stood together.  Much like our fight now!

The girls always want to cary a part of him with them.  So they try to show they care and want to carry on his strength by wearing a piece of a number that meant something to him.

When he watches them play sports, much like the chances of him getting Parkinson’s, the feeling he has is 1 in a million!

Lucky Number 7

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 -

 

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

 

 

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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

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.