This is post 3 of a multi-post series about my DBS Journey. Make sure to catch Part 1 and Part 2 as well. Forty-seven years ago when I was mastering the art of walking I was cute, daring and most importantly, closer to the ground. (And lots of Italians with big hands were there to pick me …
In January 2017 I received my DBS.
Pre-Brace Information: I was diagnosed with Multiple Sclerosis in September of 2009. With the exception of weakness on extremely hot days, I had no symptoms or issues until the spring of 2012. For the next two years my left sided weakness was minimal and something I could hide from the world. Until the spring of 2014 when my problems began revealing themselves. My foot drop, leg, arm, hand weakness and limping increased until by the fall of 2016 I was having trouble walking 24/7.
I was contemplating a wheeled walker and moving to a ranch house.
Then I discovered the Dynamic Bracing Solution system online. I figured I had just enough money and positive thinking left in me for one last crazy attempt to live well with MS.
This is my story…
John Logue from Gait Dynamics near Baltimore, evaluated my gait, made the mold of my leg, and determined all measurements of my brace which was fabricated in Southern California by Dynamic Bracing Solutions. It’s truly a transcontinental set up. You can read about John’s bracing process by clicking here.
Day 1: January, 19th 2017
When I received my DBS I couldn’t do much. Not only did I need to be trained but I also had to find custom shoes to wear. Because of that I was sent home with a DVD of hip and pelvic exercises to perform as well as loaner shoes to give me something to wear while doing the exercises:
I headed home and begin wearing the brace to work on skin tolerance. On day one I was told to wear the brace twice for 30 minutes and follow a schedule that would allow me to work my way up to 8 hours of wear in about 2 weeks. During that time I was supposed to perform exercises that involved thrusting my pelvis / hips back and forth, diagonally and side to side.
The brace allowed me to stand up straight and be perfectly aligned throughout my lower body. My pelvis was even. My hips were above my knees which were above my ankles. When I took a step, my feet remained flexed (no more hiking up my hip for floor clearance).
After 60 minutes I was reminded how weak my left side had become over the years and my back was sore from thrusting my hips so much.
Day Two: January 20, 2017
I went to Van Dyke & Bacon Shoes in Baltimore to find shoes wide and deep enough to accommodate the brace. Although my right foot is a size 8, my left foot is now a size 10 to fit the brace inside. Yes, you guessed it – for every new pair of shoes that you want, you have to order two pairs of different sized shoes. (I’m guessing that I’ll either donate my extra shoes to other DBS users or those with prosthetics.)
Once I got my first pair procured, next on my list was learning how to put the brace inside the shoe and then put my foot inside the brace. Finally I could start walking!
Damn. My left foot keeps dragging and I don’t feel even in my shoes as if one leg is now longer than the other. So to fake it, I take a bunch of inserts out of a variety of size 8 shoes to pile into my new Mary Janes. This seems to be helping my right leg even out with my braced left leg.
Since it has been 14 months since my last chiropractic adjustment, I make an appointment and for the rest of the day focus less on walking, more on doing the exercises. After 90 minutes of brace work I notice a spot on my knee feeling tender.
As for skin tolerance I quickly accelerated the skin tolerance plan once my friend Jen, a certified occupational therapy assistant, reminded me that I was cognitively intact and able to realize when my skin was breaking down. She suggested that I started wearing it at least 4 hours per day, minimum. I did.
Was able to walk around my kitchen while grabbing onto counters and do all of my exercises.
Lastly, I had to learn how to take off the brace. I only have one strong hand so I have to push it off with my good foot, but those with firm grips shouldn’t have any problems taking off a brace.
Day Three: January 21, 2017
Wore the brace for 5 hours, performed exercises and was able to walk a little without and assistance. I’m not sure how walking is supposed to work. The DVD illustrates the exercises but doesn’t really explain how these are supposed to help me walk. I’m getting a little frustrated and I’m super bummed that I can’t be at the Women’s March in DC that’s less than an hour from my house.
Day Four: January 22, 2017
Wore it for 7.5 hours. Because my legs aren’t even and my shoes haven’t been adjusted I don’t feel comfortable wearing it outside because my risk of tripping is too great. During my chiropractic adjustment she noted how “jammed up” my right leg is. I’ve been baring all of my weight on my right leg for years and it shows. She pulled on my leg which created space in my hip joint, knee and ankle and felt fantastic. I was able to wear the brace while I worked out on an elliptical machine and a stationary bike.
Day Five: January 23, 2017
Went back to Gait Dynamics with my new shoes. John built up my right shoe, added padding to the brace’s knee cuff, gave me tips on how to perform the exercises and feedback on how I was walking. I was encouraged to contact a DBS user in California who counsels many brace wearers to be successful users.
Days Six, Seven, Eight, Nine: January 24, 25, 26, 27, 2017
Worked up to wearing my DBS for 12 hours and made two videos to send to my new California friend. I performed all exercises but still had trouble walking. The exercises focus on the pelvis and hips but I was confused about what I was supposed to do with my knee. This process also involves putting a piece of equipment on a very weak leg. Oh and I completely forgot how to freaking walk because it’s been years since I’ve walked normally!
I tried walking around grocery stores because of the long aisles and their sweet wheeled carts. Walking with a cane. It felt weird and heavy and my legged flopped around a lot.
I’m wondering if my right shoe needs to be adjusted some more as my leg seems to still be dragging when I walk.
Day Ten: January 28, 2017
Went to Starbucks (with a cane) and Target (used their cart). My leg felt heavy and awkward. Standing straight while perfectly aligned feels great. Working out on the elliptical feels wonderful. Walking without a cane is scary and confusing. My knee cuff keeps slamming into my knee and pushing into me near the end of my gait cycle. Tomorrow I will finally Skype with the gal in California.
In the meantime, this is how I’m walking.
Day Eleven: January 29, 2017
I now know that I need to sit back in my heels while pushing my hips forward and resting my weight in my knee cuff while standing. I need to practice pushing my hips forward / backward; left / right; while keep the weight in my cuff. These movements will help me to better move my hips during the gait cycle and trust the cuff to support my knee as I create and ultimately respond to the momentum of walking. She suggested that I use a long, walking stick in lieu of a cane since canes are often leaned on while walking.
Day Twelve: January 30, 2017
Took my new insights into Wegman’s and grocery shopped for 30 minutes. It was exhausting but successful. It turns out that although I need to do the exercises slowly, walking very fast to take advantage of momentum is a great way to learn a new gait. It’s also very tiring to add the extra weight of the brace onto a leg made up of weak muscles, tight tendons / ligaments and non-lubricated joints. I wore the brace for 14 hours, even choosing to nap with it on when I got home.
Day Thirteen: February 1, 2017
Its been three days since I’ve stopped taking Ampyra, otherwise known as the “MS Walking Drug”, and honestly I feel great. The pre-brace me was always tired from constantly sitting (AKA never moving) and expending so much energy to drag half my body around limping. For the first time in years I’m tired from using muscles and working hard. I’m being mindful and napping when needed as I build up my strength.
The only question that remains is, “What the hell do I do with my knee when walking?” and “Why the hell isn’t there a DBS walking handbook that’s given to new users?”
Day Fourteen: February 2, 2017
I further learned how to keep my knee straight and activate the brace via a heel strike, which presses my heel up toward my rear and allows my foot to clear the ground during the swing phase. The faster I walk, the less my leg flops around (but the more breaks I need because it’s been a long time since I’ve moved so quickly).
Today I walked 1800 steps!
After two weeks of working with my DBS, I feel that I finally have all pieces to this walking puzzle. Now its about practicing indoors and outdoors, with and without a cane as well as walking both fast and slow.
February 11, 2017
I’m now walking a 15 minute, half mile on the treadmill. I still hold on to the side bars because after years of walking slowly and leaning onto a cane, I’m clueless as to what to do with my arms. I’m like an ape learning cotillion etiquette, but I’m getting there.
I’m able to walk down the street where I live without a cane and went to a doctor’s appointment cane-less as well. Now I just need to bring some smoothness to my gait.
My goals are as follows:
As I meet them I’ll add completion dates to the list.
February 13, 2017
It’s been 1 month since I received my brace. I officially don’t take my cane with me to run errands anymore (although it’s always in my car just in case). My body still doesn’t know what the hell to do with my arm while I’m moving. It’s been bent for so long I can’t fully straighten it. I’m hoping some myofascial work next week will help work out the kinks. Because it was so windy today I decided to stay indoors and logged 1300 steps inside my local Target. Other highlights included walking across a friend’s front lawn (it’s been years since I’ve done that).
Lastly, my daughter emailed me specific information regarding her college graduation this May. My first thought wasn’t, “Oh shit. How am I going to walk around the University of Maryland campus?” Instead I thought about how exciting of a day it’s going to be for our family.
After only one month of wearing the brace, this is how I’m walking now.
To follow my DBS progress click here.
A few months ago I was frustrated by my continued gait dysfunction. No matter which medications I’ve taken (Copaxone, Tysabri, Ampyra, Low Dose Naltrexone), therapies I’ve attempted (yoga, Feldenkrais, Anat Baniel Method, physical therapy, myofascial release, basic calisthenics), or medical equipment I’ve purchased (AFOs, foot drop braces, canes), my walking was going to shit. I’d …
