8 LIFE LESSONS ONLY A GIRLFRIEND WITH NEUROPATHY WILL TELL YOU

We learn lessons from the moment we can comprehend. Some are taught in books and classrooms, and some are learned from experience.

I was diagnosed with a progressive neuromuscular disorder in 2nd grade. No one ever taught me how  to actually live with the physical challenges of having Charcot Marie Tooth Disorder.

After being diagnosed, there was no sit down ”disability talk” like the one we had about the ”birds & the bees” when my mom used the ”What’s happening to my body” 70’s picture book as her talking guide. Doctors offered next to nothing after diagnosis and ”Living with a Disability 101” wasn’t offered in college.

The following 8 Life Lessons are from my own ”live and learn” experience. Some are ones I wish I had learned earlier in life, and others are ”funny now”  but not so funny then, lessons from one Perfectly Imperfect  woman to another.

 1. DON’T USE YOUR TEETH; THEY CAN FALL OUT

This is no joke. About a year ago, While attempting to tear a bag of dog treats open with my mouth, my top front tooth (dead center of my mouth two days before leaving for Cancun ) literally fell out.  I will spare you the scary visual (my husband used it as a screensaver for awhile to annoy me) but it wasn’t pretty.

Because my fine motor skills suck, I used my teeth to open things in a hurry; which was and still is almost always. After the tooth fell out and I endured 7 long months of back & forth trips to the oral surgeon, having to wear and clean an uncomfortable retainer with fake teeth & over $8000 in dental bills, I  learned my lesson.

 2. CARRY SCISSORS

Since the ”tooth incident”, I always carry a pair of scissors I found on Amazon with me and have several pairs in both my bedroom and kitchen where I’m likely to use my teeth to pull or open something when rushing. The large soft-grip handles are easy and comfortable to hold. 

I use the scissors daily to open things I once used my teeth for like, Splenda and Crystal Light packets. You can click the link to purchase a pair on Amazon here.

 3. DON’T GET OUT OF GYM CLASS

When I was in school, I was embarrassed about not being able to run and jump like other kids. I hated recess and gym (the two things most kids love most) and didn’t want my peers to see my weaknesses.

My mom asked (more like told if you knew my mom) our pediatrician to write a note giving me a permanent exemption from required gym classes. She loved me and didn’t want me to uncomfortable. If you’re parenting young kids with physical challenges, heed my advice in all capitals for emphasis, DON’T GET THEM OUT OF GYM CLASS; unless of course, your child’s medical professional advises it.

My mom thought she was helping me, but giving me an out from gym class, did just the opposite; It reinforced my belief that it was not ok to be different (Read more about my history in my Blog Skinny jeans & leg braces) and gave me a lifelong excuse for not participating in physical activities. I didn’t learn then (it took 30 years) how to assert my needs and talk about my disability, nor did I learn resilience, which is the secret sauce of having positive self-esteem.

 4. IF YOUR CORE IS STRONG IT CAN COMPENSATE FOR WEAKNESS

I didn’t start regularly exercising until my mid-thirties. I had no idea what I was able to physically do because I never tried. I used my disability as an excuse but looking back, I was probably just lazy. After I had kids (and an extra 20 pounds of weight) I joined a gym and tried various classes. Check out my post called, A Recipe For Assertiveness to learn more about handling group exercise classes with a disability.

I’ve tried many cardio and strength training exercises and classes, but Pilates,  has literally changed my body and life. I am stronger and in better shape today ( my abs have 2.5 of a 6 pack of lines) then I was at 30 , because of regular Pilates practice.

Pilates was originally created for the purpose of rehabilitation and it’s an ideal exercise for people with neurological issues, as you are almost always holding on to something or lying down.  The focus of pilates is on strengthening the core (stomach, lower back, hips and buttocks) muscles via either mat or equipment based exercises . A strong core can make up for weak peripheral muscles when climbing stairs or getting out of chairs.  I can’t tear small packets of sugar, but my strong upper arms can open jars and push others in wheelchairs. 

To keep the pilates straps secure on my feet, (both of my ankles are fused with pins and have no movement) I need a secure foot bed. I found the exact pair used in physical therapy treatment and bring them with me to every class. They are $65 for the pair but invaluable to me as I could not do most pilates exercises without them. You can get your own pair here.

 5. ALL TAMPONS ARE NOT CREATED EQUAL

If you are a man reading this, you may want to skip ahead. This lesson is for my Girlfriends who have fine motor issues, still, menstruate and use tampons. There might be like 5 people left reading this, but hey, if you help one person right?

Depending on the brand and material, some tampons are easier to insert and remove, than others.  I find the plastic Playtex brand applicators are easier to use than the cardboard Tampax brand. But, NEVER USE the small generic kind given out for free in some airport bathrooms.  Let’s just say, that after an entire day of frustrating attempts to remove the said object, and an hour of Google searches on Toxic Shock Syndrome, I embarrassingly went into my Gyno’s office for assistance.  One final tampon tip, if traveling outside of the US , remember to pack plenty of your own supplies as some sell tampons without strings attached.

6. HAVE BACK-UP BRACES

I am completely dependent on my afos (leg braces) and have to wear them anytime I put on shoes to leave my house. I completely rely on them for balance and to help me walk. It is with the help of afos that I am able to walk for miles at a time without getting tired, climb up hills , and even ride a bike. The recommended 10,000 Fitbit steps a day is easy to get with the help of my afos. But, Take away the brace and I’m completely screwed.

I learned my lesson several years ago while on vacation. You know how when you notice a pin size crack on your windshield, you’re supposed to get it repaired right away, or it will spread, and you’ll end up having to replace the  entire thing?  Well,  when I ignored a pin size crack on one of my afos and the next day it completely cracked. All plans were off since I could barely walk with just one afo. I’ll never forget how helpless I felt and now pack an extra set of afos in my luggage.

7. CREATE A FEET EMERGENCY KIT

Just like the first aid box we keep on hand for our kid’s scrapes and insect bites , it’s a smart idea to have supplies on hand for your feet emergencies.  If you’re an orthotics/afo wearer, you already know invaluable band-aids and moleskin are for preventing friction from painful blisters & callouses.

Once, when my afos were ruined from being accidentally dropped in a lake, I discovered how hard it is for patients to find the material needed to make straps. I ended up purchasing two knee braces from a local drugstore and rigging its straps to use for my braces.

I now have a go to foot emergency kit filled with extra brace straps, velcro tabs and almost every Dr. Scholls foot care product ever made.

8. JOIN OUR PERFECTLY IMPERFECT TRIBE

The best thing for anyone living with physical disabilities and neuropathy is to have a positive mindset and focus on the things we can control. While we may not be able to fix the cause of our neuropathy, we can decide how much attention we pay to it and how it impacts our day to day lives.  If you, like me, choose to focus on looking and feeling your best and not on the suckiness of your disorder/condition , you will be happier and healthier.

A good start if you haven’t already done so, is to join our ”perfectly imperfect” tribe at http://www.trend-able.com so you don’t miss a better living with a disability tip or Blog. Next, come visit our Trend-Able Facebook page and/or follow us on Instagram for a dose of daily positivity. Hope to see you there.

TREND-ABLE INSPIRATION

This amazing documentary about the super fabulous Bernadette Scarduzio is a must-see and it will stay with you long after viewing.


The film (available on Amazon Prime) shares a very personal glimpse into Bernadette’s life; the many challenges she faces, incredible losses and her resilience. Bernadette suffers from Charcot-Marie-Tooth (CMT) disease, a genetic disease affecting the nerves of the arms and legs, and she is a huge source of inspiration to those of us within the CMT community. She continues to help raise awareness about CMT through her work at the Hereditary Neuropathy Foundation.

Since the release of the movie Bernadette’s life has changed in many ways. In particular, she quit smoking and learned to drive a hand-operated vehicle! She has also connected with a huge community of people with CMT, many of whom have become close friends.


When I spoke with Bernadette recently, she said, I am honored to be one of the leaders for CMT awareness and I will never stop fighting for those of us who can’t fight for themselves.” You can reach Bernadette at HNF.

Visual Handicap vs Invisible Disability

INVISIBLE PHYSICAL DISABILITY 101

The saying “You Can’t Judge A Book By Its 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. 

I love this fabulous illustration by Amber

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 the mall on weekends. People would either stare or avoid eye contact altogether. People who weren’t that nice felt obligated to be nice because of the wheelchair.

I could sense people’s pity; being the object of pity is a powerless, crappy feeling.

Of course, I was only visibly disabled for a short time and cannot possibly understand what it’s like to be a long-term wheelchair user.

After I had the leg casts removed, I could walk and looked like a “regular” teenager again. My physical disability was no longer obvious and became an invisible disability.

On the Invisible Disabilities Organization website, they quote an SAAP 1994/1995 study that states, 1 in 10 Americans have a severe disability. Out of those with physical disabilities, only 74% use a cane, walker, or wheelchair.

Those of us with Invisible Physical Disabilities and challenges have a unique set of challenges. For example:

I could easily fall on my ass in a slippery parking lot but rarely use a handicap space for two reasons:

  • I feel guilty What if someone with a wheelchair doesn’t have a place to park? I can walk. Am I just being lazy?
  • I will be judged – I will get a dirty look, rude comment or accusatory note on my car from ‘REAL’ disabled people and/or their advocates.

 

I love this fabulous illustration by Amber from Colitis Ninja. http://www.colitisninja.com

Although Amber’s graphic refers to Invisible Illnesses, people with Invisible physical disabilities can easily input our own “What You Don’t See” at the bottom.

 

As a teenager, mine would have been:

  • Scars on each foot
  • Surgically implanted pins on each ankle fusing them in place

 

Today, I would add,

  • Two leg braces up to my knees
  • Hands that can’t write or do buttons
  • Bruises from tripping

 

Tell us what people see and don’t see when they look at you.