tweaks
7 hacks for orthotics & afos

7 hacks for orthotics & afos

Being a full time leg brace wearer can be annoying & frustrating at times, but I’m grateful for them as I would not be able to do all that I can do without their help. So, when it comes to AFOS, the good definitely outweighs the bad, especially when you know hacks to make them more tolerable. What follows are 7 common Afo & orthotic problems and their solutions.

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10 Thinking Traps When You Have A Disability

Did you know that each day the average person has about 60,000 thoughts? Some researchers say that this number is actually closer to 100,000. Although math isn’t exactly my strong-suit (My kid’s stopped asking me for help with their math homework after 4th grade), I’m thinking that irregardless of the exact number, our brains are really busy. I know mine’s been working overtime ever since my kids became teenagers.

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How to balance Christmas parties & life an invisible disability like Charcot Marie Tooth, MS, Cerebral Palsy, & neuropathy.

Holiday Survival

The Holiday Season isn’t all jingle bells and sleigh rides when you have an invisible disability. As temps begin falling and your calendar starts filling, the stress and worry about how the hell you’ll make it through it all, rears it’s Scrooge like head. Of course this time of year can be stressful for everyone. There is a ton of pressure to be merry and create picture perfect, Norman Rockwell like moments, to then post on Facebook of course.

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Disability Hack for people with Charcot Marie Tooth Disorder CMT or other Neuromuscular disorders

”STICK IT” TO ”PICK IT” UP!

You don’t realize how many everyday tasks require the use of a pincher grip until you don’t have one. To clarify, I have pinchers (fingers), it’s the gripping part that doesn’t cooperate.

Although I try to be positive and live my best life despite having peripheral neuropathy, it’s the small things, that can be the most frustrating and get me off my groove. Btw, if you have no clue who I am, or what I have, start here.

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Unexpected Priveledged Problems When You have disabilities, Wear AFO’S /Leg Braces & Have A Neuromuscular Disease Like Charcot Marie Tooth or MS.

FIRST WORLD PROBLEMS

Disclaimer: All problems are relative to the person, situation, demographic, & resources . The following “problems” are those faced by me, an admittedly privileged suburban woman with invisible (not obvious) physical challenges due to an inherited neuromuscular disorder called Charcot Marie Tooth (CMT). The hashtag #firstworldproblems refers to those everyday, non life-threatening, and sometimes superficial  ”problems”…

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shoe help for people with leg braces or orthotics

SHOE PARADISE = PLUS SIZE STORES

When I first started wearing leg braces, I thought my cute shoe days were over forever. Since the brace made my already wide foot even wider, I thought the only bearable option were wide-width overpriced “comfort shoes”.

I had an epiphany a few years ago when I realized that since I remove the insoles from every pair of shoes, I’m not really getting or apparently needing the “comfort” part; My leg braces are doing the real work.

What I really needed, were wide shoes with depth, good soles & stability. Some plus size stores have EEEE width shoes. They are mostly inexpensive and best of all, always on trend.

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Woman With Charcot Marie Tooth Disorder

SKINNY JEANS & LEG BRACES

To say it has not been easy finding myself is an understatement for sure
I literally put my parents through virtual hell from age 10 until my early twenties.

I’ll spare you the details for now. Let’s just say…
Delinquent Depressed teenage girl + mom fed up and near nervous breakdown = Shipped off to Boarding School far far away
Like many teenage girls, I was really insecure and wanted to be accepted so badly that I literally cried out for attention.

Everything was black & white and I remember worrying constantly…

What if No one saves me a seat at lunch?
What if I NEVER get invited to Homecoming?
What if no boy EVER really likes me?

I wanted to have the “perfect body” and “perfect boyfriend” just like Seventeen Magazine told me I could have and should have.

There were no Dove “Real Beauty” campaigns back in the 80’s.

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COCKTAIL SURVIVAL TIPS

5 COCKTAIL PARTY SURVIVAL TIPS FOR UNSTEADY GIRLS

I love parties. Getting an evite or that rare old school paper invite in the mail, is exciting.
It always feels good to be included.

Most parties these days are casual. If a dress code is mentioned, it typically says “Saturday Night Snazzy” or something else implying “Look Like You Give A Shit” but anything goes.

But, getting the rare “Cocktail Party Attire” invite used to cause me great anxiety and stress. With an invisible physical disability I have worries most people never even think about.

What will I wear that will cover my AFO’s? How long will I have to stand in place?
Will they even have a sit down dinner? How will I hold a plate and a drink?

Maybe it’s age or planning ahead, but I don’t stress as much anymore.

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Women with Arthritis and CMT Buttoning Shirt

SAY BUH-BYE TO BUTTON BATTLES

A great fitted white shirt is a staple in every fashionista’s wardrobe. But,

when you have fine motor issues, all fasteners are a pain in the a##; especially buttons.

You can use a button helper (metal tool found at home health type stores. But,  they are time consuming to use. Instead,  I have all my button downs sewn up permanently by a local seamstress. I always leave a few open at the top and buy shirts with plenty of stretch in the fabric so that I can easily slip them over my head.

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Visual Handicap vs Invisible Disability

INVISIBLE PHYSICAL DISABILITY 101

The saying “You Can’t Judge A Book By It’s Cover” has a literal meaning for those of us with invisible physical disabilities and challenges.

When people think of the term, disability, they mostly picture people in wheelchairs or those using walkers or canes. Those little blue signs designating special parking and larger (usually cleaner) bathrooms are distinctly labeled; wheelchair users can park or pee there.

These assistive devices symbolize to the world that the person using them has either a temporary or permanent physical disability. They are treated differently.

The summer before I started high school (in the dark ages before internet and iPhones ) I had a major operation on both of my legs and had to wear two leg casts and be in a wheelchair for 6 months. It sucked to say the least.

My best friend Stacie used to push me around the hallways at school and at the mall on weekends.

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