Laugh A Little!

Hadley Horton doing what she does best!

It Will Heal Your Soul!  (Hadley Horton doing what she does best!)

Find the people in your life that help you laugh!

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Review From Left Hand Style – Style In Its Right Mind – By Stephanie Thomas

Thank you Left Hand Style for the review!

MagnaReady makes a great gift for Fathers Day! If you or someone you love has difficulty fastening buttons, the MagnaReady buttondownshirt will make dressing easier and faster.
It’s a great looking shirt. I appreciate designer, Maura Horton’s attention to fashion as well as function. MagnaReady uses  individual magnets underneath each button for long-lasting dependable closure.

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Sisters

Click Here For Audio – Carly Simon

 

Two Little Gazing Standing At The Sea

Two little sisters gazing at the sea,
Imagining what their futures will be.

TWO LITTLE SISTERS LYRICS – CARLY SIMON

Two little sisters gazing at the sea,
Imagining what their futures will be.

The older one says, as her eyes look around,
“I will go as far as the corners of the town.
I’ll plant a little garden, flowers everywhere.
And pluck the most fragrant for my hair.”

I will go as far as the corners of the town

The older one says…..

Two little sisters gazing at the sea,
Imagining what their futures will be.

The younger one stands with her eyes open wide.
And says, “I’ll go as far as the corners of the sky.
I’ll gather all the stars each night as they appear,
And pick the very brightest one to wear in my ear.”

I’ll go as far as the corners of the sky

The younger one stands……

I didn’t choose you and you didn’t choose me.

I didn’t choose you, who would guess we’re from the same family?

But, what will you do when the nights get cold?
When the stars grow dim and your dreams seem old.
Watcha gonna do when winter calls,
And your flowers fall from the garden walls?

I’ll come home to you, you’ll come home to me.
My love will be your remedy.
I’ll choose you and you’ll choose me.
We’ll be two daughters dancing by the edge of the sea.

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I’ll come home to you, you’ll come home to me.
My love will be your remedy.

The best remedy for Parkinson‘s.

Expect The Unexpected

I grew up in a family of practical jokers. Sandwiched between boys, it was common place to be the brunt of a punchline.  What doesn’t kill us makes us stronger mentality. We never took things too serious, the boundaries were always being stretched.  My father was right there as an instigator, although he would deny it.   During my high school years he thought it was comical to slip a bread tie into our sandwich while my mom was making our lunches.  Yes, a bread tie.  So while talking to friends, catching up on the days after school activities, homework or sports and testing schedule, you would bite down and feel a crunch.  The visual of a half dangling bread tie outside of your mouth and half in was mortifying to any teenager but it did make you chuckle a little too – just on the inside.  At some point I began to roll with the punches – and declare “oh, that’s my dad,  just trying to be funny”. I learned to always check my sandwich before devouring it but, then the day I would ease up and forget, it would be there again. Uncanny sense of timing.

Overnight Beach Field Trip

Overnight Beach Field Trip

Libby is on an overnight beach field trip with her school. An event she has been looking forward to since 1st grade.  They travel as a collective group, explore battleships, marine biology, spending countless hours with each other and bunker down at a campsite.  Her enthusiasm was contagious, at first how exciting, wonder what it will be like, but then I heard a report on the camp food as being described as “wonderfully delicious” and thought maybe this trip was being over sold.  We all became excited for her, the hope of something new and unexpected.

The Unexpected Surprise!

The Unexpected Surprise!

The overnight bags were packed for a solid week in advance.  Double – triple checking constantly. Water Shoes – check – Sweatshirts – check – Pillow – check – Camera, Money, Outfits and Sleeping Bag – check! As I tripped on the overflowing duffle bag and backpack for days, I thought, what could I leave in her bag that would remind her of us. Some moms leave loving notes or pictures…… some leave threatening reminders “to behave”……. I had decided, I was leaving my loving note in the form of a snake / serpent, tucked in her dark sleeping bag- sure to evoke a shrilling scream as she placed her tiny legs inside to sleep. It was also a reminder that when she laid down to close her eyes she had comfort  knowing, we can’t be with her physically but she’s always on our mind.

Life is full of unexpected surprises and last night as my youngest and I lay there and wonder if Libby had “discovered” her love surprise and if she had, why we couldn’t hear a ear piercing scream all the way in Raleigh, my phone beeped with an email.  Here was our unexpected surprise…. the FDA has issued a recall for the DBS (deep brain stimulator) cap manufactured by Medtronic‘s.  Seriously, a recall? We JUST had the surgery… how can this be? It’s not like taking your car in to have an airbag replaced.  There are no “loaners” to request.  I am not sure to date what our path will be to make the correction, but it takes me back to my family and the lessons they taught and we hope to teach, of expecting the unexpected and trying to roll with the punches.

http://www.businessweek.com/news/2013-05-02/medtronic-s-deep-brain-stimulation-device-cited-by-fda-for-flaws

Coming Out Party!! Parkinson’s Awareness Month

Parkinson's Awareness

Parkinson’s Awareness

April is National Parkinson’s Awareness month. Our second official “out- open and proud” month. We had been living in a secluded world of don’t ask, don’t tell.  Making the announcement or declaration that you have Parkinson’s currently comes with as many side effects as the medicines Parkinson’s patients take on a daily basis.  At the core of every tremor or rigid movement is sleeplessness of how the disease will manifest, trepidation of being shunned, fear of ignorance and terror of loosing a job. The worry is endless.

Do you agree?

Do you agree?

Our angst stemmed from living and working in a sports arena where the environment is much like Tiger Woods and Nike’s new ad which states, “winning takes care of everything”.  We spoke soon after our diagnosis with an attorney friend in Boston who recommended Don notify his employer and as to anyone else, well, that was up to us.  So we took his advice. Don told Tom. We told our parents and then asked them to respect our privacy and keep it to themselves. They honored our requests.  We lived our lives.  Challenges came up- as did questions.  I was always amazed by our true friends- because they never asked. Not that they didn’t care- it’s just that they knew if we needed to talk about it- we would.  They didn’t need whatever was happening to us to be defined.

I remember being at our first NC State bowl game. We were at a kickoff  luncheon and a coaches wife, that was new to Tom’s staff, asked Don brashly- in front of boosters and alumni- what was wrong with his arm? and would it (infer he) ever be “normal”? Both Don and I witnessed her husband kick her under the table, as if to tell her to shut up but her ignorance was already on display. Don simply answered, no.  We never felt the need to explain.  Other times, people would inquire and we would say he had had a stroke. Who cares what it was.  If you were asking, most likely, we knew you were already judging.

I’ve read many peoples personal stories of their Parkinson’s coming out party- not telling- revealing to some or just simply confirming but July 2nd, 2012  is a news day I will remember.   Bill Geist, CBS Sunday reporter announced via a video message that he had been dealing with and hiding from his Parkinson’s diagnosis. “I told no one. Not even my kids.” For 10 years he and his wife lived with this secret.  He says “he didn’t want to be known as the sick guy” and that for “personal reasons he was afraid he would get laid off or wouldn’t get promoted”.  When he was asked whether it was a difficult decision to come out this way.  His answer, was simply, “a very difficult decision”.

http://www.cbsnews.com/8301-505269_162-57465578/bill-geist-parkinsons-revelation-very-difficult/

Someday, I hope Don will speak to how he felt about informing the people he cared for that his life would be forever different. More importantly I hope he speaks about keeping it inside for so long.  We went to great lengths pretending not to have this disease. It started by just refusing to let it control us but at some point it changed into something more. We began planning recreational things around “good” times of day, avoiding certain social situations where it may be an issue, donning sunglasses when he could to disguise the blank look that many Parkinson’s suffers have, being sensitive to Dons low voice and helping him repeat himself, always sensing when it was time to go. The list goes on an on.  Hiding the disease became a full-time job in itself.

Why do people cry?

Why do people cry?

When I “came clean” to a select few, all I remember were tears.  I couldn’t stop crying.  I couldn’t believe I had held it in for so long and even after all the time that had transpired, I still couldn’t believe it was our reality. It was as if verbalizing the diagnosis finally made it true.  As a caregiver you often see how people respond and internalize things.  We often see it all and in that “all”, I realized that the fears that kept us from disclosing it were happening whether we were forthcoming or not.  I can report, all of our angst and trepidation came as true as a Disney trip to the Magic Castle. It’s as if Cinderella waived her wand and voila, but it all happened, regardless of the way we chose to handle it. 

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A Review From Rehab Management Magazine

Thank you Rehab Management Magazine for the review! Whether your disability is short term, like a broken bone, rehabbing your way back from a stroke or something more permanent – we hope our adaptive wear product can help!

A Duke Fan Forever

Team Sweeney

Team Sweeney

We currently reside in the south and in a triangular area of a state that has deep dividing “what team do you pull for?” lines. We’ve been associated with teams for all of our lives. Beginning from the ones we are born in to.  My first team was a family of 12.   We could actually field our own football team, with a substitution for injury to boot!  An Irish Catholic group whose heart and soul could stand close to any Notre Dame team. My father had a friend actually suit our family up. This gear was pre Adidas or Nike contracts. Our small frames and entire backs  were incased with the letters SWEENEY.  Now and then when we went on family excursions to Kings Island or Disney, we would proudly don our jerseys, making it easy for my parents to assess if a child had strayed from the flock.  My mother, who has in uncanny sense of preserving our childhood memories, recently “presented” me with my  jersey.  I was Lucky number 12.  Memories flood back now when I see my youngest wear it to sleep at night.  I am thankful to recollect my first official group.

Don - Indian Hill Jersey

Don – Indian Hill Jersey

Don has been a life long team member.  The first jersey number he can recall – 21.  His favorite number – 70.  He literally has played a role at every capacity a team member can be.  Father, player, coach, recruiter, husband, speaker, rookie team trainer, brother, statistician, water boy.  You name it.  He has been it as some point in his lifetime, from little league, Indian Hill, Wittenberg, Ohio University, UVA, Capital, Ohio State, Southern Illinois, New Mexico State, Boston College to NC State.  His hope is that whatever lives he touched during this process, they were positively influenced and changed.  At our wedding rehearsal dinner one of his  close friends and fellow team mate, Scott presented him with his basketball jersey.  It was from their alma matter Indian Hill, where they proudly took the Eastern Hills League by storm in basketball. They fondly reminisced about their playing time and the roles they played on and off the field in each others lives. Being a part of a team is special and those relationships formed generally last forever.  We hope our kids remember more of the process of being on a team than their stats.   As parents, we would rather our kids receive a good teammate or sportsmanship award than a MVP any day.

We all like to be on the winning team, or working feverishly to achieve that status.  In this profession many ethical and great leaders have been “cut loose” because their wins didn’t necessarily translate to victories that were seen on a score board.  When Don had made his mind up to go ahead with the deep brain stimulation surgery, we both felt the immediate need to evaluate our team.  Don had been seeing a neurologist at Duke that was recommended when we relocated to North Carolina.  He was fine.  I’m sure inundated with patient overload had caused our appointments to be short and for several phone calls and emails to be unreturned for days.  After asking a few questions about his surgical experience and knowledge with DBS, we decided, together, that our team needed new players.  Research ensued, phone calls placed and meetings / appointment set.  We decided that we needn’t search far. We had found the right facility.  We just needed 5 star rated players.  We came together for the first appointment, armed with a defense of questions that would take hours.  Don stated our intentions of assessing his candidacy for DBS and we were looking for the right person to lead this effort.  One of the keys would be,  if you were going to cut into his brain and body, we would need a little better response than what we had been receiving from the previous doctor.  It felt right from the moment we shook hands. Our defenses put at ease.  We confirmed what the best game plan and forms of communication would be and to date his attention has been amazing.  So great, that a veteran recovery nurse remarked out of surgery that she rarely sees surgeons examine their patients in recovery, but there was Dr. Turner – just checking in.  He has been the beacon of light we needed to make such a large decision and I’m glad were weren’t afraid to make an adjustment.

Having worked in athletics now for 30 years, we completely understand the word loyalty and dedication to a team and now a cause.  So, when someone has any question of what team we root for……. we will proudly claim Duke.  So, go Coach K!  Carry on Coach Cutcliffe and most importantly, thank you Dr. Turner and Duke Hospital for the first class care that we have received.  We couldn’t ask for a better team in a battle that isn’t just a season at a time but everyday of our lives.

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