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.

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.

 

Bucket List

Do you know anyone with Parkinson’s disease? It’s a neurological condition that can be debilitating – and there’s no permanent cure. When a wealthy Wall Street investor’s dad was diagnosed, he did something that you’ll definitely be inspired by.

Asking his dad what’s on his bucket list and making it happen! The children of Parkinson’s sufferers and their bond with their loved one is immeasurable. Never taking things for granted.

Help your loved one complete their list. Help them Be FREE To Dream!

 

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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.

“The greater need besides being able to [dress] independently is being able to look like everyone else, or look how you want to look,” Horton says. “Instead of standing out because of your disability, that’s one way that we should be able to all stand on a level platform.”

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’t prepared for the small changes that nobody thinks about—like 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.

“Clothing is social capital. Often [clothing for people with disabilities] falls under the functional end of the spectrum and doesn’t look cool or stylish,” Teo says. “What we’ve noticed is even if you have the best intentions, the best product, the most helpful technology, if it doesn’t look great, people don’t want to wear it.”

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’s inaugural OSL program. The students work in teams of three, with each team assigned to one of the program’s eight clients—all 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’s 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’s Disease—a debilitating condition which left him unable to dress himself.

“When my husband was first diagnosed , I looked at the [adaptive clothing] choices that were available online. It frightened me,” Horton says. “What I was seeing online was not something I wanted to replicate with my family. They were not quality choices.”

Horton says one of the most important aspects of her “magnet-infused” 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.

“The greater need besides being able to [dress] independently is being able to look like everyone else, or look how you want to look,” Horton says. “Instead of standing out because of your disability, that’s one way that we should be able to all stand on a level platform.”

As founders of the OSL program, Teo and Tin share Horton’s sensibility. The ultimate goal of the program, they say, is to make “the distribution of clothing more accessible.”

“Everyone has a range of clothing to work with because [clothing is] a channel for self expression. For populations with disabilities, that vocabulary is limited,” Tin says. “What we’re doing with Open Style Lab is to reintroduce diversity into their wardrobe.”

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 – 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.

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 always – 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 ! 

 

 

 

 

 

 

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.

 

 

 

 

 

 

 

Father’s Day Via Instagram

Instagram is one of those social media platforms that some would say we opened the door too early and allowed our 11-year-old to partake in.  Our concession to this method of communication comes with as many rules and regulations as Obamacare.  One of the caveats would of course be, to monitor her account.  Most of her posts are harmless selfies.

This Sunday when we checked we saw this.

Always be my no 1!

 

An image of her and her dad at a cotillion father – daughter dance earlier in the year.

The picture is precious to me for many reasons

but now, add her comments (minus the spelling errors)

and it is truly priceless!

Libby is at the age when we, as her parents, can be embarrassing for a host of reasons. However, when your dad is not like all the other dads, physically, it seems to stand out.  We are simply, more aware that his Parkinson’s Disease may add to her discomfort or questions from friends.

So, it was refreshing to see her proclaim “no madder” what, he’s her #1 man – for all to know.

Oh What A Night!

We traveled as a family for the first time to the wonderful city of Seattle.  To attend the American Parkinson’s Disease Association Magic Of Hope Gala. Don was being honored.   What an incredible time for us to come together and share our story, journey and hopes for the future.

The Magic of Hope Gala 2014 - American Parkinsons Association

The Magic of Hope Gala American Parkinson’s Association

We were lucky to meet many warriors of the disease who are valiantly fighting as well. We were happy to help raise awareness and money for programs and research that we believe will help those afflicted.
Copyright 2014 Garet Munger

Copyright 2014 Garet Munger

We were humbled that Russell Wilson would take a moment to help support our cause by speaking and donating.

Attached is a clip from his tribute to Don.

I know Don was honored to hear Russell’s words but honestly, upon reflection we both agreed that he had given a gift to the Parkinson’s community and our family – especially, our girls.

As the disease progresses and the father they once knew is harder and harder to see, they will have this small token from Russell.

Helping them remember what a difference Don made in his career as a coach and human being.

Once again, thank you Russell.