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.

 

 

 

 

 

 

 

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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

Just Being Is Fun

Sometimes we dwell on the changes we have undergone and are scared of what lies ahead but because of these two little ones we opt for a different path.

I never lose sight of the fact that just being is fun. ~ Katharine Hepburn

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Quote is by Katharine Hepburn – Many know her from her amazing breath of work on-screen.  Others know her for having Essential Tremor as well.

Essential Tremor is a neurological condition that causes a rhythmic trembling of the hands, head, voice, legs or trunk. Some even feel an internal shake. It is often confused with Parkinson’s disease although ET is eight times more common and affects an estimated 10 million Americans alone.

A few great resources for ET are  International Essential Tremor Foundation and Tremor Action Network

Another quote by Katharine Hepburn

“Now to squash a rumor. No, I don’t have Parkinson’s. I inherited my shaking head from my grandfather Hepburn. I discovered that whiskey helps stop the shaking. Problem is, if you’re not careful, it stops the rest of you too. My head just shakes, but I promise you, it ain’t gonna fall off!”.

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

Stamp And Send Love

On Facebook,  I saw a gentle reminder of how one of the smallest Christmas traditions could be a gift and help not only brighten someones day but spark change.

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Horton Christmas Card 2008

From the mom of a close friend of mine asking for something so simple.

It read:

“My daughter’s picture of the boys has me thinking of our annual “Breakfast with Santa” at North Ridge & how much Donnie enjoyed them. There is little joy now, so we do everything we can to spark a moment of clarity or a memory. Cards sometimes help! His address: Donnie Stancil, Room 320A, Crabtree Valley Rehab Center, 3830 Blue Ridge Rd, Raleigh 27612.

Her husband, Donnie, has Parkinson’s and additional health challenges. This is the first Christmas they won’t celebrate together in “their” home.

Not sure if it was the brutal honest comment of – there’s little joy now – or the HOPE that something we could do could help change a day, a minute or a connection but I applaud her plea and will happily oblige.

Hope that all will take a moment during this busy season to send love via a stamped card, especially to families that need a little extra tenderness!

Horton Christmas Card 2009

Horton Christmas Card 2009

From all the Horton’s much love and hope this holiday!

 

 

Until there is a cure we will be the change.

 

Caregiving is a Continuum

I came across an interview this morning that Cokie Roberts granted Today’s Caregiver. It struck a chord and caused introspection.  Here is the portion I have read and re-read.

Question:  You’ve said that caregiving is a continuum.  Can you explain what you mean by that?

Answer: “That is the message I always try to give young women (I do this at women’s college graduations all the time): first of all, don’t think that there is a period of your life when you’re a caregiver…When your children are small.  When your parents are old, whatever it is.  What women do is take care.  That’s what we do.  We do a lot of other stuff, too, but what our mission on this earth is, as far as I’m concerned (and I get a lot of argument on it, but that’s tough) is taking care.  Sometimes, it is taking care of the planet or the library or the cultural center or whatever it is.  But usually, even if that is what a woman’s focus is, she’s also taking care of human beings.  And it’s not necessarily just of your own children when they’re small or when they’re having problems along the way or of your own parents.” – Cokie Roberts

I appreciate visualizing a different view. It is one that I embrace and will reiterate.

Our mission on this earth is taking care.

The root of caregiving is compassion.  Our two compassionate children.

The root of caregiving is compassionate people, at every age.

You can read more of Cokie Roberts writings in We Are Our Mothers’ Daughters

http://www.amazon.com/We-Are-Our-Mothers-Daughters/dp/B000GG4LX0

Big Week!

This is a big week in the Horton house! Our oldest child turned 10! Landmark of double digits! We officially have a “tenager” in our midsts. As per usual, she asked probing questions of the day she was born- what time EXACTLY? what did we do the night before? when did she crawl? did she cry a lot? what were her first words? when did she get her first tooth? and do we still have the clothes she wore home from the hospital?  Somehow, I do remember most of the details without consulting her Bible – aka baby book.  We peruse a few photo albums where we thought it necessary to document every expression.  But there’s one photo that has always catapulted to the top of my list of favorites.  It’s a simple giclee black and white picture of just Libby and I.  Her side profile precious. Her curly locks of hair naturally flowing, with a bow of course and an innocent loving smile on her face.  It resides on my neatly cluttered desk. I often look at it and instantaneously I have a grin on my face.

18 Months Libby and Me

18 Months Libby and Me

It seems even more appropriate to me this week, as we launch MagnaReady on a larger scale.  I can’t help but draw inspiration from this photo.  It’s just a mother and daughter sharing a tender moment and doing something we all take for granted – buttoning.  Something so insignificant to most of us, that is until you or your loved one are unable to do it on their own.

So here’s to 10!  Here’s to MagnaReady! and here’s to the beginning of independence!

What’s In A Smile?

This week Don will officially become the bionic man. Watch out Lee Majors, Don Horton is after you! After four weeks of healing, the surgical implants from Deep Brain Stimulation will all be connected.  Many have questions… How does it work? Will you immediately see the results? How long will it last? and What are the benefits?

Well, one of the gifts that we look forward to seeing the most… …. is his simple smile.

Hadley asked “why doesn’t dad smile when he sees me?”  I felt my heart brake into a million pieces right before her big hazel eyes.  I responded reassuringly “he smiles”.  She’s my debater, so I knew this wasn’t going to be over as quickly as I wanted and I desperately needed to put my heart back together in my chest. “Mom, when you pick me up you always smile and I know you’re happy to see me but dad doesn’t.”  “Oh honey”, trying to stall and put together my words to be able to communicate to a five year old child as to why it seems that way. “Your dad smiles when he sees you, when he thinks about you, when he watches you sleep at night and even when you are arguing with your sister.  It’s just that there is a part of his brain that makes it hard to show emotion. You just have to feel it.  When he looks at you, when he takes you for a walk, when he reaches for your hand, when he’s playing with you and when he kisses you goodnight.  You are the highlight of dads day! You are why he wakes up. You are why he breathes and you are why he won’t give up.”  She’s 5, so I know I can relate everything to a song.  I said “Hads you know the Bruno Mars song we always sing… Just the way you are?”  THATS EXACTLY how dad thinks about you.  To quote……

bruno mars

This might be one of the harder parts for me to explain. Parkinson‘s sufferers often lose the ability to control the facial and vocal muscles which allow them to convey a range of different emotions. Although they continue to have natural emotional responses, often, they cannot indicate them in the normal manner, by smiling or frowning or by raising or lowering their voice. Instead, their face appears expressionless.

SO… if THIS

deep brain stimultion


plus (+)  THIS

Image

Don Horton Wedding

EQUALS (=)  THIS

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Hayes Horton and Hadley Horton – The Ultimate Smiles!

Then it will be a success!!

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