multiple sclerosis – Veronica Gogan

Let’s Get Some Shoes

“Give a girl the right pair of shoes and she can conquer the world.” Atta girl, Marilyn Monroe. My quest to find world-conquering shoes is very specific. This blog is for anyone with walking difficulty who is incessantly looking for a shoe they feel secure and comfortable in. It took a long time to figure out why some shoes were easier to walk in than others, but I finally cracked the code: zero lift shoes and shoes that snugly fit to the bottoms of my feet.

Like many people with multiple sclerosis, I have weak tibialis muscles, which makes flexing the ankle difficult (also called dorsiflexion). Ten years ago I suffered from very dramatic drop foot. It’s better now, but not completely resolved. (Drop foot is a disruption of the peroneal nerve which flexes the ankle.) My toe flexors, which usually curl the toes and aid balance, are both weak and suffer from spasticity. My world-conquering shoes have to help me compensate for these things.

Zero lift shoes are designed so the ball of the foot and heel are level (horsey people, see note). This means the ankle lives at around 90 degrees. Shoes with a lift open this angle and necessitate more dorsiflexion during walking. A subgroup of zero lift shoes are called barefoot shoes. Devotees of this subgroup claim it is the best shoe for alignment, offers a more natural gait/heel strike, is better for balance, and reduces pain for runners. Mainstream examples of barefoot shoes are Vibram Five Fingers or Merrell’s barefoot line. They are specifically designed to balance weight across the foot. The toe box is usually big to allow ample toe wiggling. Plus they are very light weight.

Any shoe that isn’t securely fastened to the foot relies on the flexor muscles in the foot to keep them on (i.e. flip flops). When those flexor muscles are weak, fatigue easily, or behave erratically (in the case of spasticity), the shoes are controlled more by the forces of motion than by the foot. At least two functions keep shoes on: heel cups (sometimes called heel slings) and straps or laces.

The shoes I like best have zero or nearly-zero lift and can really be ratcheted onto my foot or have elastic that keep them in place. Laces and elastic make them easier to get on and off as my feet don’t exactly wiggle themselves into shoes very well. I’m using a loose definition of zero lift in the following list of my favorite shoes. This isn’t often listed as a feature outside of barefoot shoes. Here are my favorites:

Classic Converse Chuck Taylors – This one is my favorite right now and was a recent discovery. Almost the entire top of the shoe is laces so I can make them loose at the toe and tight over the top of my foot. They are remarkably lightweight.
Sperry Men’s Authentic Original Boat Shoe – Mine are mens because the width gives my toes extra room for their weirdness. The men’s style covers more of the top of the foot too. One leather lace goes behind the heel and crosses over the top of the foot creating a snug fit. I’ve had mine since circa 2007 and they’ve looked the same since about 2009.
Vans Slip Ons – These are my cutest shoes! I was surprised these were as easy to walk in as they are. I had to size up in order to get them on, but they stay really snug. (Plus, colors for any style!)
Merrell Move Glove cross training shoes – These check all the boxes, the annoying thing about the soles is they squeak. I drag my feet sometimes and they make an awful noise when I do. This model is discontinued, but there’s a current version.
Vans Sk8 ComfyCush – These are my new gym shoes because of the ankle support. They have exactly the same footprint as the slip ons. The tongue has elastic which keeps the foot secure to the sole (not a feature of the regular Sk8 Hi’s). I lace them tight when I need support and loosen them when I don’t. I find when they are tight, my ankle flexion weakens really fast, just from fighting the shoe.

I have other shoes, but these are my go-to’s for easier walking. If this helped you, send me a note or leave a comment. If it didn’t help, was there different information that would have? Any requests for the next blog?

Note for horsey people. A fact from my hunter equitation days: wearing shoes with lift, whether it is sneakers or stilettos, can respectively shorten the calf muscles which can impede that “sinking into your heels” feeling.

For those of you who don’t know the title reference here, it’s one of the first viral videos I ever remember. It’s one of those tunes that sticks with you. Fairly raunchy, proceed with caution. “Shoes” by comedian Liam Kyle Sullivan.

Welcome to the club.

It’s a big year. This year I will have had multiple sclerosis for as long as I didn’t. I was diagnosed in 2004 and 17 years later, here we are. It all started with some numbness on the left side of my face that migrated to my left ear and down my neck. An MRI revealed my “textbook” relapsing-remitting multiple sclerosis with three brain lesions and seven spinal lesions. This diagnosis put the pieces together for some vision problems I had been having and a strange episode of back pain I had as a 15-year-old.

My “Uncle” Mike was a big part of my life when I was a tween. When I was diagnosed, his wife, Rita, was the only person I knew of who had had multiple sclerosis. She was severely disabled by secondary progressive multiple sclerosis. She passed away due to complications of her disease before I met him. She needed help with almost every element of daily living. I had heard tales of how Mike made sure she ate first, she slept first, her needs were always his priority. He was completely devoted to her and her every need. When I was diagnosed, this was all I knew about multiple sclerosis. I couldn’t believe this was the same disease I had, I was 17.

For the first few weeks after I was diagnosed, my dad and I maintained a steady state of denial. Then all of a sudden, we would just be overcome with grief. I remember crossing paths with him in the dining room and he hugged me. We stood there sobbing, shoulders shaking, clinging to one another. For several minutes we cried together. Then he gave me an extra squeeze, we grabbed napkins to wipe our snotty and tear-soaked faces, and we continued on our paths. No words were spoken. To this day, that is the most healing hug I’ve ever gotten, but I know where to get another one.

My mom has a supernatural power that most physicians develop, they learn to compartmentalize and control their emotions. No matter how fierce the winds of anger blew or how water from tears of grief raged, she was the rock that was stronger than the storm. She instilled that strength in me – lovingly and tenderly and like a badass. This strength is at the core of my ability to see past a setback or a bad day with MS.

The best advice I received was ABSOLUTELY, under no circumstances should I Google MS right away. The Internet has zero reliability to provide helpful, moderate information. I quickly learned that setting the right mindset was paramount. I went to an MS Patient Awareness Day shortly after my diagnosis and it scared the hell out of me. I came away thinking that people with this disease became one dimensional: DISABLED. There were so many wheelchairs, canes, walkers, scooters, and sick people! It did not represent where my disease was at that point. I quickly learned to control my “mindspace” and am still incredibly cautious about what I allow in.

I started a disease modifying therapy right away. I started a vitamin regimen to address a vitamin D deficiency, fatigue, and nerve cell health. Sure, they were daily reminders of MS, but they also made me feel like I was doing something about it. I clung to my horses for mental health and to continue physical well-being. I am an action-oriented person; making this plan was incredibly empowering. Every. Single. Day., I have a plan.

I can’t tell you how often I’m asked, “My [friend, aunt, coworker, nephew…] was recently diagnosed with MS. Would you be willing to talk to them?” I love this question because it makes me feel like my tenure with this illness has created something valuable to be shared with others. I hate this question, it means another person with this illness.

But, of course, my answer is always, “Yes. Absolutely.”

To you, newest member of the MS Club, here is my advice to you. And to you, the person whose loved one just received this news, this is for you too.

Being diagnosed with MS SUCKS! I know that’s the thing you’re not expecting to hear. The fact is it *#!%ing blows! It’s ok to feel this and feel it hard. Remember though, you have MS, MS doesn’t have you. We live in an incredible time with support organizations, remarkable pharmaceuticals, therapy options, anti-inflammatory diets, natural supplements, and the Internet.

Absorbing this news is going to be a process for you and the people in your life. You may feel like you have to be strong, brave, knowledgeable, and assured while you ride the denial, grief, and anger roller coaster. If you decide that you will come to terms with it, you will. You are in charge.

Find your hug – the person who needs no words of explanation. The person who will be sad with you, wipe your tears, and move on with you. Find your rock – the person who will help you find your strength. Learn from her, absorb her strength, and develop your own. Make a plan – take action to feel empowered. Control your input – only allow the necessary information in at this time. The National MS Society has an informative landing page designed just for you.

I am here to tell you, this is not a death sentence. MS is just PART of who I am, but MS is just a part of who I AM. I am also a woman, a wife, and a mother. I am a horse lover, an equestrian, and an athlete. I am a cook, a writer, and an animal-lover. Welcome to the club, I’m here for you.

Note: (This advice is applicable to any diagnosis. Let’s face it, any diagnosis sucks, how much it sucks depends on how invasive it is going to be and how long it’s going to be around. This advice can help with just about anything, I think.)

“Why does she walk like that?!”

I’m going to rip this Band-Aid off. Here’s a video of me walking. The absolutely most difficult thing for me to share. I hate videos of me walking because it shows a disabled person and that’s not how I feel. For years, I have avoided having my picture taken with my scooter, canes, or walker because those were “temporary” tools and “I won’t need those for forever”. Newsflash: maybe they are here to stay. Disability is a strange thing. I may share a disability with someone, but not their diagnosis. Anyone affected by an outward disability hears the same unspoken question, “I wonder why she walks like that.” (And I’m sure it’s never phrased, “What’s wrong with her?”) Here’s my explanation on why she walks that way.

First, a 91-word anatomy and physiology lesson. Muscle groups sometimes work in pairs: when one side contracts, the other relaxes. Quadriceps straighten the knee and hamstrings bend the knee. Calf muscles point the toes and the shin muscles lift the toes. Sometimes muscles work as a group, like hip flexors that flex the hip during the swing of a step. The large and small muscle groups work together to control balance and locomotion. Voluntary and involuntary muscle action is controlled by the nervous system. This is a very simple explanation of an incredibly complex thing we call walking.

Second, a 75-word explanation of multiple sclerosis. “Sclerosis” means scar. Think of nerve cells like electrical wire. The wire, or axon, is what transmits the current; the coating, or myelin, creates a protected channel for the current. In MS patients, myelin is attacked by the immune system; think mice chewing on the electrical wire. The chew marks eventually scar. “Multiple” scars result in the nerve cells transmitting faulty or missing information. These scars are in the brain and on the spinal cord.

My mice have wreaked havoc on my electrical circuits. As a result, the signals to the voluntary and involuntarily muscles used for walking are all out of whack. Spasticity is when muscles get a strong message to contract, but not the same strength signal to relax. I am most affected by spasticity in the large muscle that extend my knees and point my toes. The muscle pairs begin to work against rather than with one another. The counter muscles can’t overpower the spastic muscle. To compensate, I swing my legs outward from my hips. The little muscles in the foot and ankle responsible for balancing are powerless against a flexed quad and calf and result in poor balance. Over time, unused or underused muscles become weak. Just like damaged electrical circuits, somedays my body works better than others. My circuits are more damaged on my right side. Upsides: it is not painful and I CAN walk!

I wrote this explanation because I overheard a lady say to her friend, “Why do you think she walks like that?” I found it strangely cathartic to write this for a person who will never read it. I also am not offended by her innocent curiosity. As someone who is disabled, I find myself wondering the same of others sometimes.

There are two kinds of disabled people: those who own their disability and those who let it own them. I’m the former. I can find appreciation in my circumstance. Walking this way is fatiguing, I have learned to pace myself. I am independent to a fault, so I am learning to ask for help (…sometimes, it’s a work in progress). I have learned to appreciate that I have lots of tools, from my canes, to my scooter, to a stranger’s offered arm. In the world where we can always use an uplifting story and it’s so easy to complain about the bad stuff, I’d like to share my good stuff and how I find positives in the bad stuff. We’ll see how it goes.