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 an invisible disability like CMT (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 on how to live with Charcot Marie Tooth Disorder 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 be 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. You will enjoy this post 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) than 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 footbed. 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.