My name is Carl Brance. I’m 38 years old and was born and raised in Southern California. At the age of 15, my parents moved us to a small town in Northwest Oregon. It was only a couple of years earlier that puberty hit (I was a late bloomer) and it was clear that my body had changed rapidly and abnormally. I had FSH muscular dystrophy, but for this story I’m going to stick to one thing and save FSH for another time.
The lush greenery and coast line of the great northwest soon had me rooted firmly and I was more than happy to spend the rest of my teenage years and life in Oregon.
In 1997, at the age of 21, I had taken a job at Toyota and was getting ready to go back to college. One week after I started my job I was letting a friend drive my newer truck. It was a particularly rainy and dark night when we were joy riding down a rural route road.
I don’t remember anything about what happened, but I was awoken to two EMT’s holding me down in an ambulance telling me that it was imperative that I remain still. It was two weeks later when the reality set in and I became aware of what happened.
That night the driver of my truck had completely missed a turn and we barreled head-on into a bolder that was as big as the truck itself. I was thrown from the vehicle and out of the passenger window. The EMT’s thought that I landed on my rear, scissoring forward and over stretching my hamstrings while also causing internal damage. In fact, the impact was so great that it demolished three lumbar vertebrae in my back, while also damaging my bladder and bowels. The damaged organs were the least of my problems, although having nurses change my diaper was something I will never forget. The drain in my back, along with 14 inches of staples, trumped any of my other concerns. Surgeons also fused my spine from T12 to L4 with the hopes that at very best I would be an incomplete paraplegic. It was also at this time that they diagnosed me (officially) with FSH muscular dystrophy, which my mother and sister also suffer from.
At first I couldn’t feel or move my legs for what seemed like forever. I prayed for the blessing to have my leg muscles work again and soon after, by the grace of God, my muscles, bowels and bladder started firing again. This was all during a relatively short period of time and I had to completely learn how to walk again. My old anatomy and physical world wasn’t even recognizable at this point. You want to talk scary, I had to learn how to sit to up, lift my legs off the bed, get in my wheelchair and wheel down to the acute rehab and eventually learn to stand up so that I could eventually walk again.
Progress and blessings continued to flow quickly as I became able to stand and walk on the parallel bars as little as one month post-surgery. I had made so much progress that I really hadn’t absorbed the immensity of what had happened to me.
Fast forward two years and I was an incomplete paraplegic with complete foot drop on my left leg. My legs and back were also tender and fragile and it was most certainly compounded by the FSH MD. To address the foot drop I was seen by an orthotist and was fitted with a plastic, hinged AFO (ankle foot orthosis). My parents and I called it a clacker because of the sound it made when I walked. It also did a number on my pants by pinching and ripping them.
I went for two years with this style AFO and was never happy with it, but all those who have suffer through these types of injuries, trauma and/or physical changes know that there comes a point when everything truly hits you. It hit me hard in the form of depression and loneliness, despite having a wonderful loving family around. I felt so awkward and different and simple things became overwhelmingly stressful. For instance, a friend invites me to a movie and instead of being excited, my head starts spinning with thoughts like “how far will my friend park from the theater”, “when I’m walking in, how many people will look at my awkward gait”, “I hope they don’t sit too far up the stairs” and “I have to hobble embarrassingly up while everyone is watching”. Many of you know that your mind becomes overly pragmatic about every physical movement and path of travel to every destination because it is exhausting, scary and creates an introspective and lonely nightmare.
There was definitely one thing that was far more disappointing to me than any other, the medieval plastic AFO. It was quickly becoming a terrible thing and at this point I was on number six or seven in the two years that I was wearing this.
After I enrolled in vocational rehab and went back to college pursuing a degree in semiconductor electronics and computer networking, I began to try and design a better AFO. Although I reached nowhere fast and realized I didn’t have a clue what I was doing, I continued to hold hope that there was something better.
So I went on the Internet and spent many nights looking and reading about foot drop and AFOs. During this time, I came across a company called Camp Scandinavia and a product they had called the ToeOFF® and I tell you it was love at first sight!
My orthotist was never happy to see me because it meant that my mission to find a new brace was continuing. After asking him if he had ever heard of a ToeOFF brace, it just so happened that he had one in his facility but it was too small. Watching his lips move but not hearing a word he is saying, I snatched the small left ToeOFF from his hands and couldn’t believe how light and sexy it was. As his lips were still moving, very rapidly at this point, I put the ToeOFF in my shoe and began to walk. IMMEDIATELY I felt something….. A spring in my step, which is something that I hadn’t felt for two years. As I turned and walked back towards the orthotist his face changed to amazement. He then noticed that I was crying as I’m tearing up while writing this. Despite being two sizes too small and not fitted properly, it was AWESOME! What a moment!! A moment later I walked into the waiting room and got my dad in on this crying action.
Three weeks later I was semi properly fit with the correct size ToeOFF and I went from hiding my clacker AFO to wearing shorts and telling strangers about my ToeOFF. I was so enthralled by this that I starting reading about orthotics and prosthetics and was able to then change my college direction and even began an internship at my local prosthetics and orthotics lab. I worked there 25 hours a week minimum, absorbing everything that I could. At this point the facility I was interning at was unaware of the ToeOFF. After they watched what it did for me they were very impressed and it was only a short time later that I was helping them fit many patients with the ToeOFF.
I had already had contact (another cool story for another time) with the makers of ToeOFF via a wonderful lady named Carol Paez. It wasn’t long before I started pressing her for a job because I was truly amazed by Carol and the care and concern she showed me. Even though I’d never met her she had become one of the most special and important people in my life. Wouldn’t you want to work for somebody like that? I desperately wanted to part of such a wonderful product and company. I felt the genuine empathy she showed me and that was the exact level of care that I had envisioned bringing to the prosthetics and orthotics industry.
It wasn’t long before I began testing different ToeOFF devices for her and the other wonderful designers in Sweden, while continuing my work at the prosthetic lab. By now Carol and I talked very regularly and during every conversation with her I dropped the subtle hint “you guys need someone like me” and I finally wore her down.
In late 2005, I began working for Allard USA Inc. After being hired by Carol and the owner Mr. Allard, I immediately realized how caring and empathetic Mr. Allard also was, which I think is different from many others who run companies of this size. I was one happy camper to become part of this team and now 10+ years later I’m a district manager and recently became ToeOFF Product Specialist. I’m extremely honored and proud of this and I love to continue telling people about this amazing product and how it changed my life so dramatically.
Life can be so challenging. Here I am a person with muscular dystrophy and an incomplete paraplegic, but I have to say that ToeOFF continues to be a part of me, not just as a device but more like a real extremity. I’ve been blessed to try nearly every device from nearly every corner of this earth and there is still nothing that compares to my ToeOFF. It’s the best carbon fiber brace in the world and nothing comes close! I take great pride in that and will continue to offer that gift to anyone interested. I also know that Allard and their incredible development team will continue to come up with extraordinary orthotic and prosthetic devices and I am so proud to be a part of that. How cool!
I know my situation is unique, but there is one thing that will work for all of us. That is to Get Back UP Today. Please believe me, I don’t say that lightly. Do whatever you can to move more, be more active, have fun, compete with yourself to make small amounts of progress and to find a way to not let your disabilities define you. It hurts, it’s hard, it’s embarrassing and exhausting but, the more You Get Back UP, the less you’re down. That’s where our disabilities can drag us down!
We all have to find a way each day to put a smile on our faces and to Get Back Up and never give up. For me one of my new adventures is becoming a co-captain of the Get Back UP Today campaign. The folks involved in this movement are angels of this earth, so I’m not sure why they picked me :).
Telling our stories can be extremely hard and I’ve never written mine down like this. It has been very healing and eye opening. So please if you have a story or questions, I would love to hear from you. Thank you for listening.