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.

Advertisements

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!

 

Image

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.

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

DSC_0017

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

DSC_0060

Close ups provide perspective.

and other times the lens is wider.

DSC_0010

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.

Broad Shoulders

I ask not for a lighter burden, but for broader shoulders.

DSC_1276

I ask not for an easier path, but for stronger feet.

My Path

I ask not for weaker enemies, but a stronger me.

DSC_1221

Let life do with us what it wants, but let us be strong enough to handle it.

DSC_1243

 

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

Image

Believe In The Magic Of Christmas

An unwanted and unsolicited dialog has been happening at our home.  Our 10 1/2 year old openly questioning her belief in Santa.  Although, I would assume she had started having doubts last year, she was kind enough on my old soul to keep her curiosity silent.

That is until now.

The conversation started….

“Mom, so-in-so’s mom told her there is no such thing as Santa.” My initial quick response, I shouldn’t repeat.  It caught me off guard and my guttural sense to preserve our children’s youth and naivety kicked in.  The next day….again…..”Mom, so-in-so said her mom and dad let them pick what they want off their list.  She has NO Santa gift.”  I was a tad more prepared and responded gentler with; “Well, that’s great for their family but WE believe.”  The last straw……. “Mom, seriously, I can handle it. I know the truth. Everyone else’s mom is honest with them.”  I took a deep breath, turned and looked in those deep blue eyes to try and touch her soul and stated what I truly hope my family will always believe.

May you always believe in the magic of season.

May you always believe in the magic of season.

I said, “Libby, if you don’t believe in Christmas or in the existence of St. Nick, then it makes it difficult to trust in magic and miracles. In turn, it makes it unfathomable to believe that there will ever be a cure for Parkinson’s or hope for your dad.  We have to be able to have confidence in things we don’t see.  You just have to believe.”

Not that I expect her to fancy in a jolly old soul coming down the chimney forever but I do want her to trust in the true spirit of Christmas.

Scan 28

PS….. Damn you moms that think it’s ok to spread your disbelief.  Sometimes that’s all we have and need.