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 facesūüėü”

‚ÄúPeople tret Dad like hes invisible and think he is werd. Like when people see him they make mad and bad faces‚ėĻ‚ÄĚ

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.

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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

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Children Thriving In The Face Of Adversity.

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.

 

 

 

 

 

 

 

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¬ģ 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?‚ÄĚ

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, ‚ÄúI had a hard day.‚ÄĚ He repeated and elaborated, “I had a hard day. A player had to help me get dressed to catch the team plane.‚ÄĚ 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‚Äôt be stressful; living with a disability is hard enough. As I thought through how I could help, the epiphany came, and soon MagnaReady ‚Äď Stress Free Shirting was born. If there is anything that I have learned from being a coach‚Äôs 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‚Ķ‚ĶDSC_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 РSee 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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