Tips for living with AFOs

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.


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.


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.


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.


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.


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.


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.


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.


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.


Be in the know with the latest trends, tips & hacks for living your best life.



    • Wow Julie! You helped make my morning. This really is so nice. Thank you and I’m so happy you have learned tips etc for living an even better life. ?

  1. I am so glad you are sharing your girlfriend wisdom with us all, Lainie. It’s just so needed! I am goIng to use some of my layoff “downtime” getting in better shape and will add Pilates to my lineup! I want a 2.5 pack too!!

    • Lol……you can put your pilates socks in the new ”Count your lucky Stars” pouch you won on our Instagram page. Thanks for your support Reeve. ❤️

  2. Fantastic article! And I, too, was given that God-awful “What’s Happening To Me?” book. Right along with “Where Did I Come From?” which included hundreds of smiling sperm on the inside cover. But that’s not the best part. The book reveal was at a family party in front of relatives who then laughed nonstop. Come to think of it, it’s time to give my therapist a call… 😉

  3. Ok, I’ve just gone through menopause, but #5 is hilarious! Thanks for the tips, I’ve been going to a mat Pilates class but would love to try a Reformer class.

  4. Oh wow!! This was a fantastic read! I came searching for “tampons for people with neuropathy” (lol), and found some other great information as well. I have Sensory Predominant CIDP. Basically I have no nerve response in my feet, lower legs and hands. It makes life interesting, ? and a bit dangerous at times. I’m very thankful to have stumbled across this. CIDP is a rare auto-immune disease and my form even more rare so please feel free to ask me anything about it and I’ll help in any way I can. It’s very lonely to have a disability no one’s ever heard of. I’d love to find my Tribe. ?

    • Hi Nikki,

      First of all, how funny that the ”tampons tip” lead you to Trend-Able ??. I am very interested in learning more about your rare form of CIDP. Did you follow our FB page? Please reach out there. You have found your Tribe! ??

  5. I absolutely loved this! You had me at #1! Tearing with your teeth is such a go to though. I’m still working to break the habit after cracking a veneer. Also my husband would have done the same but couldn’t get a picture. 😂

  6. What brand of Afo do you have. I have a custom pair that go on the back of my calf and give ankle stability but feel i need a back up but insurance only covered part of my current ones. Any suggestions or resources would be appreciated. Also have issues with my second tow not cooperating in shoes…ugh!

    • Hi Denyce,

      Thanks for writing! First in terms of the toe not cooperating, have you tried putting a small bandaid around it to keep it in position? Or toe separator type socks? I interchange between the Allard Blue Rocket style afos & a very similar pair of custom carbon fiber afos. Both are awesome, lightweight & help me immensely. Hope that helps! Lainie

  7. Hi there. Just stumbled into your page. My eyes lit up when I saw a picture of your afo’s. I also use the Allard brand. the toe off and the blue rocker. I have developed secondary issues with them, however, and would love to hear how another user deals with the issue of callouses and painful shin bones.
    I use a lot of moleskin type padding on the outside of my feet (bilateral footdrop), but now my shins hurt from exposure due to muscle atrophy. Any suggestions aside from more padding?

  8. Hi Marcia,

    So glad you found us! Your afos should never hurt you. Obviously the moleskin you mentioned should help & try a no rub barrier stick for chafing. But, try having your orthotist look at the fit & possibly cut-out adjust for sore spots. Lainie

  9. I have to disagree with the blanket statement about getting out of gym class. The whole attitude and practice of gym class is detrimental to most kids, and especially those with disabilities. My eldest has mild scoliosis and mild spina bifida. No matter what I did, I could not get them to stop forcing her to RUN, for two miles, on terrible surfaces. I suggested if they insisted she has to run, (which I found quite barbaric anyway) to let her do it on a proper track but they said no. I had to take it all the way to the superintendent of schools to get her out of PE because they refused to consider she might do better (and not cause permanent harm to herself) with a slight accommodation.

    My other daughter is autistic and has balance and proprioceptive challenges. She’s very uncoordinated and cannot throw or catch a ball, run without falling down, ride a bike etc. I requested she be allowed to access the weight room instead of having to attend bully-school (also known as PE class) and they refused. They forced her to endure team sports and all the bullying and humiliation that goes along with that, and refused to allow her to learn a functional way to exercise her own body in an individual way. Again, I had to go all the way the superintendent to rescue her from this sanctioned bullying.

    PE is great for those who are into that sort of thing. The rest of us should be permitted to find movement that works for us as individuals and commit to that instead. The whole school gym system needs to be thrown out. It’s only a place where kids who are not athletically gifted are taught that they are a waste of space and their only value is to be a target for athletically gifted kids. It’s disgusting!

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