Fashion, Style & other tips for summer wedding & party guests with disabilities like charcot marie tooth disorder, MS & other neuromuscular or neurological conditions.

Do’s & don’ts for weddings

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.

How to be happy & single in LA with footdrop, an invisible disability caused by Charcot Marie tooth disorder.


Note from Lainie: This post was originally printed in 2018 in a follow-up to a Q & A with it’s author, Rebecca Etchberger, and focuses on the challenges and lessons of chronic illness dating.  If you are looking for more tips on how to date with an invisible disability like Charcot Marie tooth disorder this…

Enjoy resort pool with AFOs


The fantasy of a tropical escape from the freezing winter is what powers many people through another 4 inches of snow to shovel, or their extra long commute home from work on ice covered roads.

My husband and I love going to all-inclusive resorts in Mexico. The weather is always perfect, and we get to truly relax without having to really plan or think.

For us, one of the best parts of getting away is the planning; It’s our vacation foreplay. We love using sites like Tripadvisor to scan through photos and traveler reviews.

This year we chose the Secrets Akumal Resort in Riviera Maya. The resort was breathtaking and lived up to its many 5-star reviews. The service, beach, entertainment, and even the food was amazing.

But, our favorite part of any resort, the main pool, was missing an essential element… A WAY TO GET IN & OUT.

I have since learned my lesson. Here are a few resort tips for sunbathers with physical challenges:

Woman With Charcot Marie Tooth Disorder


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.



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.