8 LIFE LESSONS ABOUT LIVING WITH CHARCOT-MARIE-TOOTH DISEASE

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

I was diagnosed with Charcot Marie Tooth Disease (CMT), a slowly progressive and incurable neuromuscular disorder, in the 2nd grade. But no one ever taught me how to actually live with a disability.

After I was diagnosed with CMT, there was no sit-down “disability talk” like the ones many of us had about the “birds and the bees”. In fact, the popular 1970s book “What’s Happening To My Body?” that my mom used to teach me about my body parts and sex didn’t even mention disability.

The doctors who tested my complete lack of reflexes didn’t tell me anything, and of course, “Living with a Disability 101” wasn’t a class offered in high school or college.

Before the internet, we were on our own and basically had to learn how to live with disabilities like CMT through trial and error.

But, for those of you who found your way here and are new to Charcot Marie Tooth Disorder or other neuromuscular or neurological disorders, you don’t have to “live and learn”. I’ve got your back!

The following tips on living with Charcot Marie Tooth Disorder are “funny now,” but “not at all funny then” lessons I wish someone had taught me.

 1. Don’t Use Your Teeth

A few years ago, while attempting to tear open a bag of dog treats with my teeth, disaster struck: my top front tooth literally fell out just two days before I was leaving for a vacation.

My fine motor skills are not the best, so I often use my teeth in a hurry. After the traumatic tooth incident, involving numerous trips to the oral surgeon, an uncomfortable retainer with fake teeth, and over $8000 in dental bills, I learned my lesson the hard way and now carry a pair of soft-grip travel scissors with me at all times.

These scissors have become my lifesavers, replacing the risky habit of using my teeth to open Crystal Light packets and pretty much everything else. I also keep a pair in my bedroom, where I’m likely to use my teeth when I’m rushing to get out the door.

🔹Pro Tip🔹

When attempting to get all of your Amazon boxes open and other items in the kitchen, I highly recommend this Slice Tool. It’s a total game changer!

 2. Don’t Get Out Of Gym Class (Or Anything Else)

In school, I used to dread gym class due to my invisible physical challenges. I couldn’t run as fast as other kids, and I was always picked last for teams.

My mom, with only good intentions, managed to get me a permanent exemption from required gym classes by getting a note from our pediatrician. At the time, I remember feeling a huge relief that I didn’t have to be in situations where I felt different and insecure. Although it provided temporary relief, in the long run, it hindered my personal growth and self-esteem.

I didn’t learn the invaluable lesson that being different is okay and that trying new things that are out of our comfort zones is how we boost our self-esteem and grow.

Facing challenges head-on not only improves our skills but also helps to develop resilience and a positive mindset.

By embracing challenges, we can unlock our true potential and build the confidence needed to face life’s obstacles with courage and determination. Today, I carry this insight with me, encouraging others not to shy away from challenges, as they can be transformative opportunities for personal development and self-discovery.

Looking back, I wish I had learned resilience and how to assert my needs, which are vital for building positive self-esteem.

My advice to parents is to avoid getting their child out of gym class unless, of course, their doctor advises it.

 3. A Strong Core Is Everything

For most of my life (starting with skipping gym class as a kid), I used my disability as an excuse for not exercising. Growing up in the 80s, when Jane Fonda and high-impact aerobics were all the rage, I mistakenly believed that because I couldn’t do those things, I couldn’t do Anything.

Obviously, I was so wrong. With Charcot-Marie Tooth Disease, there is no cure or any real treatment. But exercise, and most importantly, the strengthening of one’s core, can help in life-changing ways and is truly one of the best things you can do for yourself.

I discovered this in my mid-thirties, after the realization that my post-childbirth body wasn’t going to change dramatically with diet alone.

Although I was terrified of what others would think, I decided to join a gym for the very first time in my 30s. I took a variety of low-impact fitness classes like cycling and weight training, but when I discovered Pilates, my entire life (and my body) changed for the better.

Pilates can help you do everything better and, in my case, help compensate for the loss of peripheral nerve function due to CMT.

Basically, pilates can help strengthen and stabilize your core (which is like the foundation of a house) so that you can move efficiently while improving your posture, flexibility, and mobility.

I truly believe that Pilates has helped me slow the progression of CMT, as I can do way more today than I could 25 years ago before doing it.

🔹Pro Tip🔹

In order to keep my fused feet (zero ankle movement) secure during my Pilates reformer classes, I bring these straps with me to class.

 4. You’ll Encounter Ableism At Some Point; Be Prepared!

Life’s got its ups and downs, and for folks like us with disabilities, it’s no different. One crucial lesson I’ve learned on this journey is that you’re bound to come across sneaky forms of ableism. Yep, those subtle little stereotypes and assumptions that can really get under your skin.

It might be someone underestimating your capabilities or assuming you can’t do something just because of your disability.

But here’s the deal – be prepared for it! Arm yourself with knowledge, confidence, and a pinch of humor. In our EmBrace It Workshops for companies, we talk about having a few clever comebacks in your back pocket for those unwanted questions and comments many of us repeatedly get.  Trust me, being ready to face those situations head-on can make all the difference.

And you know what’s even better? Surrounding yourself with people who uplift you, who see beyond your disability and recognize your potential. They’re the ones who truly matter.

So, remember, when you encounter those subtle forms of ableism, don’t let it define you – rise above it, be prepared, and show the world what you’re truly capable of! You’ve got this!

 5. All Tampons Are Not Created Equal

For my girlfriends with fine motor issues who still menstruate and use tampons, I have a tip for you. Depending on the brand and material, some tampons are easier to insert and remove than others. I found that the plastic Playtex brand applicators work better for me than the cardboard Tampax brand. And let’s not even talk about the small generic tampons offered for free in some airport bathrooms; trust me, avoid them!

6. Always Have A Backup Mobility Device!

As someone who depends on leg braces (afos) for balance and walking, I learned the hard way the importance of having a backup set, especially when traveling.

When one of my afos cracked while on a cruise, I was devastated and felt completely helpless. Now, I always pack an extra set of AFOs in my luggage, just in case.

I know! Just one pair of AFOs is expensive, especially when insurance (like mine) only covers a portion of a new set every four years. So, if two pairs aren’t in the cards, you could always purchase an inexpensive over-the-counter pair of AFOs on Amazon to have on hand for emergencies.

🔹Pro Tip🔹

Create an Emergency foot Kit. Just like a first aid box for scrapes and insect bites, it’s smart for people with foot related issues to have an emergency foot kit.

If you wear orthotics or AFOs. Include extra straps, velcro tabs, callus pads and moleskin to prevent friction and blisters.

7. Asking For Help Is A Sign Of Strength

Now, let’s talk about a lesson that took me a while to learn but has become a powerful asset on this journey: asking for help is a sign of strength! It might sound counterintuitive, but trust me, it’s the real deal.

As people with disabilities, we sometimes get caught up in wanting to prove our independence and show the world we can handle things on our own. And sure, we can – but guess what? It’s okay to lean on others from time to time.

Asking for help doesn’t make us weak; it makes us human. It takes courage and self-awareness to recognize when we need assistance and reach out to others.

Whether it’s a physical challenge or an emotional one, seeking help doesn’t diminish our strength. In fact, it showcases our resilience and willingness to adapt.

I used to struggle with this myself, feeling like asking for help was somehow admitting defeat. But you know what changed my perspective? Realizing that allowing myself to be vulnerable actually strengthened my connections with others.

So, don’t hesitate to ask for that hand when you need it and read our recipe for asking for help for tips on how to do so in a way that feels okay and doesn’t elicit pity from others.

Being able to ask for help is not a sign of weakness; it’s a testament to your strength and your willingness to grow. So, embrace it, and watch how it can lead to new connections, personal growth, and a network of people who genuinely care about your well-being.

8. You Need To Be Your Own Advocate

Alright, listen up! Our last lesson is probably one of the most important. As a person living with CMT or any disability, You have to learn how to be your own best advocate. It’s like being your own spokesperson, standing up for yourself and what you need.

Advocating for yourself is all about being assertive and making sure your voice is heard.

Navigating through all the stuff that comes with having a disability can be a real challenge. But here’s the deal – nobody knows you better than you do. So, don’t hesitate to speak up and let others know what you require to thrive.

Sure, it might feel a bit awkward or intimidating at first, but that’s totally normal. With time, you’ll get the hang of it.

And the best part? When you start advocating for yourself, you’ll see how it opens doors and leads to better understanding and support. So, be confident, be your own spokesperson, and remember, you’ve got the power to make a difference in your own life!

Conclusion:

Living with Charcot Marie Tooth Disorder has taught me many valuable life lessons, and I hope sharing my experiences can help others on their journey too.

Remember, none of us are perfect, but we can find strength in our imperfections. If you haven’t done so already, be sure to follow our Facebook and/or Instagram pages where our supportive tribe learns from each other and grows together.