About magnaready

A wife, mother and Parkinson's advocate. My blog is inspired by the lessons our children re-open our minds to when dealing with a loved one with life altering health challenges. Here I help preserve the legacy of their father - pre and post Parkinson's diagnosis.

Through A Different Window

~ Bless those who see life through a different window

and those who understand their view ~

Be who you want your children to be

Independence Day 2015

Children Of Parkinson’s

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.

F. E. A. R.

F. E. A. R. 

Fear has two meanings –

Forget Everything And Run

OR

Face Everything And Rise

The Choice is yours.

For All Our Loved Ones With Parkinson’s ¬†~¬†We Chose To Rise

DSC_0168

Braving the fight for 9 solid years and counting! Don, Libby And Hadley Horton Spring 2015.

May Our Faith In A Cure Always Be Bigger Than Our Fears

The holidays are all about believing.

‘Tis the season to take sheer delight in our small children’s innocence and lovingly see the sparkle of something so grand and mystical in their eyes. ¬†I want to hold on to it forever! Believing in things we can’t see should be eternally ingrained in our souls. ¬†Children’s hopes for the holiday season can sometimes be far reaching. ¬†Our little one had a separate note for Santa on top of her wish list.

She asked for those traditional things little girls dream of

Isabelle, The American Girl Doll Of The Year

– Eifell Tower Lego Set

– Acrylic Paints and Canvases

– A Sock Monkey

and

a cure for Parkinsons

A Part of Hadley's Letter To Santa - Age 4

“I Believe You Can Change Parkinsons” – ¬† Part of Hadley’s Letter To Santa – Age 4

She just believes…. that Jolly Old Saint Nicholas can change Parkinson’s

and I will never tell her he can’t.

May her faith in a cure always be bigger than her fears.

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.

 

MIT’s Open Style Lab – Mentorship

An amazing program that I am honored to be contributing to is MIT’s Open Style Lab, the brainchild of MIT grad Grace Teo and Brown University medical student Alice Tin.¬† A strategic platform that focuses on new wearable technology for those with limited mobility.

Helping bring visionary designs that aid people with limited mobility and dexterity to production is the ultimate goal.  What I absolutely endear about this program is that it brings together 3 areas of focus for 1 greater goal.  To unify the occupational, engineering and textile world under one umbrella in efforts to create a level platform has long been overdue.  I am proud to be a part of the process.

Below is an article published for Boston Magazine.  I believe it sums up the program nicely.  For more information, amazing stories and updates, check out Open Style Lab.

‚ÄúThe greater need besides being able to [dress]¬†independently is being able to look like everyone else, or look how you want to look,‚ÄĚ Horton says. ‚ÄúInstead of standing out because of your disability, that‚Äôs one way that we should be able to all stand on a level platform.‚ÄĚ

http://www.bostonmagazine.com/health/blog/2014/08/04/mit-open-style-lab/

 

Students Create Adaptive Clothing at MIT Open Style Lab

Engineering, design, and occupational therapy majors team up to design apparel for people with disabilities.

Barbara and her Open Design Lab team. Photo provided.

After a series of fractures left her in unbearable pain, Barbara Harrison¬†elected to have below-the-knee amputation. While she knew the surgery would change her life,¬†she¬†wasn‚Äôt prepared for the small changes that nobody thinks about‚ÄĒlike how clothes will fit.

Harrison, a Winthrop resident, now has a prosthetic leg, and the process of getting dressed in the morning is more difficult. That’s why a team of college students at Massachusetts Institute of Technology (MIT) are working together to design a new kind of pant that can be functional for those with disabilities.

Creating apparel that is both functional and aesthetically-pleasing is the whole idea behind the MIT Open Style Lab (OSL), a new 10-week summer program where students design clothing solutions for people with physical disabilities. Funded by university grants and corporate sponsors, the program is the brainchild of MIT grad Grace Teo and Brown University medical student Alice Tin.

‚ÄúClothing is social capital. Often [clothing for people with disabilities] falls under the functional end of the spectrum and doesn‚Äôt look cool or stylish,‚ÄĚ Teo says. ‚ÄúWhat we‚Äôve noticed is¬†even if you have the best intentions, the best product, the most helpful technology,¬†if it doesn‚Äôt look great, people don‚Äôt want to wear it.‚ÄĚ

OSL fellow Alex Peacock's sketch of a glove that can be worn by his client who has fisted hands due to a spinal cord injury. Photo by Kira Bender.

Hoping to change this trend, Teo and Tin have recruited 24 engineering, design, and occupational therapy students to this summer‚Äôs inaugural OSL program. The students work in teams of three, with each team assigned to one¬†of the program‚Äôs eight clients‚ÄĒall of whom, like Harrison, have a¬†physical disability. In the early weeks of the program, which began in June, teams met with their clients to identify specific clothing challenges. Now, students are focused on creating prototypes of their designs under the guidance¬†of expert mentors.

Maura Horton, a professional designer, is one of them. Though her background is in designing clothing for children, Horton‚Äôs recent efforts have focused¬†elsewhere. She is the creative force behind¬†MagnaReady, a line of dress shirts for seniors and people with limited mobility¬†that uses¬†magnets instead of traditional buttons. She designed the shirts after her husband, then a 48-year-old college football coach, was diagnosed with Parkinson‚Äôs Disease‚ÄĒa debilitating condition which left him unable to dress himself.

‚ÄúWhen my husband was first diagnosed , I looked at the [adaptive clothing]¬†choices that were available¬†online. It frightened me,‚ÄĚ Horton says. ‚ÄúWhat I was seeing online was not something I wanted to replicate with my family. They were not quality choices.‚ÄĚ

Horton says one of the most important aspects of her ‚Äúmagnet-infused‚ÄĚ shirt design, which her OSL students use for inspiration, is that it looks like any other dress shirt available in stores. Unlike other adaptive clothing, it does not differ in appearance from traditional clothing in an¬†obvious way.

‚ÄúThe greater need besides being able to [dress]¬†independently is being able to look like everyone else, or look how you want to look,‚ÄĚ Horton says. ‚ÄúInstead of standing out because of your disability, that‚Äôs one way that we should be able to all stand on a level platform.‚ÄĚ

As founders of the OSL program, Teo and Tin share Horton‚Äôs sensibility. The ultimate goal of the program, they say, is to make ‚Äúthe distribution of clothing more accessible.‚ÄĚ

‚ÄúEveryone has a range of clothing to work with because [clothing is] a¬†channel for self expression. For¬†populations with disabilities, that vocabulary is limited,‚ÄĚ Tin says. ‚ÄúWhat we‚Äôre doing with Open Style¬†Lab¬†is to reintroduce diversity into their wardrobe.‚ÄĚ

Student teams will reveal their final clothing prototypes at a public presentation at MIT on August 16 from 3:30 p.m to 5 p.m. The prototypes will also be presented during weekends in October at Boston’s Museum of Science. For more information, visit openstylelab.com. 

Grace Teo and Alice Tin try on goggles that mimic eye diseases at the MIT AgeLab. Photo by Laura Hanson.

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 Рgrocery 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.

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.