Dad Fell…….Again.

Falling is a reality for many Parkinson’s sufferers.  Balance and gait become impacted in many ways.  We will never become accustomed to the spills of a 6 foot 4 man who was once so physically strong.  Don’s falls are simply scary for him, as well as us. Sometimes we see the warning signs, but lately, more often than not, we just hear the thunderous crash followed by silence and then feet running from all directions to see what we will find.

It’s those unexpected findings that has our 6-year-old feeling uneasy.

Pre Fall Smiles!

Pre Fall Smiles!

Hadley knew at the age of 3 how to dial 911 and what our address is.  Not because these were preschool bench marks but because the likelihood of her needing to use this information was high.  How many other families can say they have emergent plans for “what if dad falls”?  Most families barely have plans in place in the event of a fire.

Often when I leave the house and Hadley is alone with her dad, a definite uncertainty starts to boil to the surface.  It’s as if I can see her heartbeat starting to race and that little brave soul kicking into gear.  She wants to be courageous but the unknown is scary.  So she begins asking very specific questions.

What time are you coming home?

– what she’s really asking is: How long do I have to be fearless for?

Will you be able to answer your phone?

– what she’s really asking is: Will you be there if I need help?

Can you call me and tell me when you are headed back?

– what she’s really asking is: Can you tell me when I can stop worrying?

Do I call 911 if I can’t get you?

– what she’s really asking is:  Is it ok if I can’t do it all by myself?

Leaving Hadley feeling comfortable and confident is getting harder and harder to do.  Her internal sense is one I have to listen intently to.  I don’t want to deprive her however, of that ever important one on one time with her dad.  Oh how I wish that while I was gone her only fret was about what Barbie is wearing and making a huge play dough mess together.

A day of face painting and an falls.

A day of face painting and falls.

We are getting really good at communicating with each other, another great advantage of modern technology. Below is a video Hadley texted me, after Don fell while I was out.  Hours earlier we were all enjoying a neighborhood fair, attempting to have a normal Saturday.  I had just run to do the mom thing – grocery shopping.  I was only going to be gone for a quick moment.  You can see the remnants of face paint on her sweet innocent cheeks in the video below.

watch here http://youtu.be/MtYwyZJ5UIo

Her response was calm and positive but that fear of “what if” will not leave her.

A fall can happen any moment for us.  Parkinson’s isn’t thinking not now, not today or wait until mom gets home. Falling is rapidly loosing control.  I believe for families of Parkinson’s sufferers, we all feel that lack of control whether we hit the ground physically or emotionally.

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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.

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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.

 

 

 

 

 

 

 

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.

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~

Keep Going!

Don’t Stop Trying Because You’ve Hit A Wall……DSC_0128Progress Is Progress No Matter How Small!

Never know where you'll end up if you don't keep going!

You never know where you’ll end up if you don’t keep going!

 

Different Views

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Often there is a struggle trying to communicate what the journey with a life changing diagnosis such as Parkinson’s is like…. to quantify or elucidate. We all experience it differently, through our own unique lens.

I know that we can not control our children’s outlook but only help them navigate.  I have learned however, to not try to define or categorize their concerns, questions or fears but to try to see the light through their ever shifting vantage point.

Some times it’s a close up and it is all you or they can see

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Close ups provide perspective.

and other times the lens is wider.

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Panoramic views provide hope.

Every journey is different.  Every moment, every decision, every prayer.

We all experience things in our own time and our own ways.

Through the pilgrimage you will truly LOVE the ones who may not be able to see all the stones on your path but can still visualize the panoramic view of your trek.

See What Love Can DO!

2013 is closed! On the books and recorded.

Our year is best summed up with the lyrics of an Eric Clapton song

Because

~When you tell your story

~ Make sure your story’s right

~ Every little single word is true

~ See what love can do

I have chronicled a video highlight of our year here.

(watch here) http://www.youtube.com/watch?v=KTXIHvgMOVg

There were many times our world felt like to was falling apart~ but hopefully we will continue to smile and pull through! We won’t let Parkinson’s compromise our happiness.

Thanks to all who helped make 2013 a memorable year!  Change will happen!

When your world, it starts to fall apart Look deep within, within your lonely heart. Do your best my friend, try and understand Its only you, pull yourself through.

When your world, it starts to fall apart
Look deep within, within your lonely heart.
Do your best my friend, try and understand
Its only you, pull yourself through.

See What Love Can Do ~ Eric Clapton

When your world, it starts to fall apart
Look deep within, within your lonely heart
Do your best my friend, try and understand
It’s only you, pull yourself through

When you tell your story
Make sure your story’s right
Every little single word is true

See what love can do
See what love can do

When the words are in the music, the music is the song
The world would be so happy, if we’d all just get along
I want to see it, a smile on every face

So when we tell our story
Make sure that it’s right
Every single word is true

See what love can do
See what love can do
See what love can do

So when you tell your story, honey
Make sure that it’s right
I finally proved the message true

I see what love can do
See what love can do
See what love can do
See what love can do

When we sing the story
Make sure your song is right
Finally proved the message true

See what love can do
Oh, see what love can do
See what love can do
See what love can do

See what love can do
See what love can do
See what love can do
See what love can do

Read more: Eric Clapton – See What Love Can Do Lyrics | MetroLyrics

The Gift That Keeps Giving!

One of the greatest gifts that I am receiving this holiday is pictures and stories of your loved ones in their MagnaReady shirts.  Some of you I have had the pleasure of speaking with directly and I so enjoy putting a face with the name!

Please keep sending.

One face, one shirt at a time – we WILL change the way limited mobility or disability look. We are all in this together!

The pictures of your loved ones in their new shirts are making our year!!

Maura,
Here is a picture of my Dad–Richard Richardson– in his MagnaReady shirt.  It was a big hit and the quote of the day was:

                           “WOW–NO BUTTONS!”


Wish i had video taped it, it was SO well received!

Thanks again Maura!

Lucky

Lucky’s Real Tomatoes

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