I AM A RESIDENT OF PEACHTREE CITY SINCE 1984 SUFFERS FROM THE MOST RARE DEBILITATING DISEASE KNOWN TO MEDICINE: FIBRODYSPLASIA OSSIFICANS PROGRESSIVA MUSCLES, LIGAMENTS, TENDONS TURN TO BONE IMMOBILIZING THE BODY TURNING ONE TO A HUMANE STATUE. JUST 1 OF 700 CASES WORLDWIDE. MISDIAGNOSED AT 3, SUFFERED A NEEDLESS ARM/SHOULDER AMPUTATION. IS A MEMBER OF THE IFOPA-INTERNATIONAL ORGANIZATION THAT MAINTAINS, SUPPORTS RESEARCH FOR THE CURE SINCE THE GENE DISCOVERY IN 2006. CURE FOP!
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Cathy Fergerson (Cheasman)
On June 27, 2006, my life was forever changed. I suffered a bilateral Vertebral Dissection; a Stroke. The clot split and moved through the right and left hemisphere of my brain and lodged in the brain stem. The clot caused damaged to the areas of the brain that control body functions such as movement, blood pressure, eye movements, swallowing and speech. Progress, if any, was far from certain.
For 3 weeks leading up to the actual stroke I was experiencing headaches, severe neck and shoulder pain. I was seen by my primary physician 3 times and a trip to the local emergency room, all of which I was quickly sent home with the no definitive diagnosis. As the days progressed the pain became debilitating.
I woke that morning with the worst headache of my life. I struggled to get up to take a drink and was unable to swallow. I took a few steps and found myself on the floor unable to move. I crawled to my cell phone and dialed 911. I was unable to communicate in any way with the EMT; their frustration grew as did mine. I tried desperately to get them to understand what was happening. Later I was told that my words were barely audible, slurred and incomprehensible. By the time we arrived to the emergency room I was vomiting a coffee ground substance, the right side of my face had drooped and it became clear that I was critically ill. The doctors and nurses frantically worked on my body, but did not speak to me. They turned their attention to my 15 year old daughter who was alone by my side and told her to call the family, “Your mother is not going to make it through the night.” I wanted desperately to comfort her. I tried to talk. I tried to move. I tried to scream. Nothing happened.
I was living a nightmare - totally awake and aware, yet trapped in my body. No one knew that I was still able to understand everything that was going on around me and yes, to feel pain. The doctors ordered an NG tube, IV's, and a catheter. All placed without communication to me, the patient. I was tossed around like a rag doll. I did understand two very important things: I was in serious trouble and I had to find a way to communicate with the outside world in order to survive.
My life was literally defined moment by moment. The love of family, friends and my faith is what has brought me through this experience. My daughter spent every day, all day at the hospital by my bedside, insisting that I could make progress from what seemed an impossible condition. She focused her time on keeping my spirits up; helping me reclaim my independence and helping me become closer to the Lord. When the day seemed unbearable she would climb into the bed and read the Bible to me. Her dear friend, now husband, would come to the hospital and play his guitar and worship to me. My twin brother and his family took on the monumental task of moving me from my home, taking care of my bills, setting up home care if/when I was discharged and ensuring that I had a family member by my side at all times. Other family members stayed with me through the night so I was not alone. I also had an angel by my side in the form of a Certified Nursing Assistant. Knowing that I was unable to move or communicate, she sat on the edge of my bed and shaved my legs. “I would go crazy with my legs like this and I know you must be too.” That simple act was enormously restorative to my spirit.
My progress started with baby steps. I focused on little goals and not the big picture. I asked God to give me the strength to get me through what I had to face each day. I could not allow myself to look back on what I'd lost or even worry about the future. Months later, my focus and determination paid off. I had recovered enough to leave the hospital and move in with my brother and his family; PEG tube in place; we were going home.
It can take years to recover ... and maybe even a lifetime. We will have to put forth extraordinary effort to do the simplest, most basic things. And, as most of us have to realize, we will have to compromise and adjust our expectations more than once. What once seemed so important and meaningful before has little or no relevance now. Life is elastic, just like our re-forming brain.
I would not give back my stroke, even if I could; even with my continued deficits and fading memory. Why? Because of the things I've learned, the people I've met and the way I now look at the world…. every day as a gift!
I'm not sure if these pictures will show up the right way!! I gave you a few, so you can pick. :D
I wasn't sure how long you wanted the bio. Feel free to edit!
My name is Whitney. I'm originally from the Sunshine State, but currently living in Denver. I moved to Denver in early 2013 when I received a job in my career field, orthotics and prosthetics. I've gotten the chance to work with a few amazing companies, including the manufacturers of my prosthetic knee joint, the Power Knee. Last year I climbed the Willis Tower (103 flights) in 50 minutes! I'm a Girl Scout troop leader, Treasurer of the non-profit LIM359 and an active member in other organizations such as One Arm Dove Hunt and Nubability. I love volunteering and staying involved in the disability community. I live by the saying, "Don't Cope, Conquer."
Love you Tommy!!
My leg was amputated below the knee when I was 2 years old because of fibular hemimelia (no fibular bone) and a substantial leg length discrepancy. I grew up playing soccer, t-ball, and volleyball on an old SACH foot. My dad was in the air force, so I had lived in about 9 different houses in 3 different states by the time I started 6th grade. I was pretty good at being the new girl in school and answering questions about my prosthesis. I was known as a jokester in school because my friends and I were constantly using my leg to play jokes on other students and professors. I’ve always believed that a good sense of humor is one of the most important qualities a person can have. I started riding horses when I was 9 years old and competed in 3-day eventing until I went to college in Virginia, where I rode on the school’s dressage team for 2 years. During the 4 years I lived in the D.C. area, I volunteered with a therapeutic horseback riding program every Saturday morning and sat on the board of directors for the statewide association. When I moved to Denver, I had a gap that needed to be filled since I was no longer serving on a board or volunteering. To fill that gap, I teamed up with 3 of my friends to start LIM359 in June of 2013 and I’m currently serving as the Board President. LIM359 stands for “living in motion 359 days a year” and is an activities-based support group for people who have lost or are at risk of losing a limb (or limbs). Our mission is to get people out trying new things in a safe environment with other people who have gone through limb loss. In March of 2013, I got my first running leg and I’m currently training for my first half marathon at the beginning of April. I run with Achilles International-Colorado every Monday night and I’m an Ambassador/NSCD-Liaison for the Caolfax Marathon race series. I graduated from George Mason School of Law in December of 2013 and I’m hoping to practice disability rights law once I pass the bar. I live in Denver with my husband and two cats. I enjoy hiking, cycling, running, yoga, rock climbing, horseback riding, crafting, camping, photography, good beer, great friends, bonfires, reading, writing, and just enjoying life in general.
I was born and raised in Odessa, Texas but knew even from a young age that I would never be content to stay. I graduated from Odessa Permian High School in 2002. It was one of the happiest days of my life because I was so excited to go off to college. I moved to San Marcos that fall and started at Texas State University (then Southwest Texas State.) Met my husband in 2004 and got my BA in Sociology in 2005 and my Masters in Social Work in 2007. I always loved school. I was hired at a psychiatric hospital in Austin a month after graduation where I worked for four years as an inpatient social worker on the adult unit. I worked with adults with depression, anxiety, schizophrenia, addiction and various other psychiatric issues. I love working in mental health. It's intense, fascinating and rewarding, albeit often in a way that can be emotionally draining. It's really no surprise I ended up in a helping profession. As a kid, I always pleaded with my parents to send money to whatever cause I had just seen a commercial for and would be crestfallen when they (rightly) informed me that it's not always feasible to indiscriminately give to every cause out there. Aaron and I married in 2008 and adopted the four - legged love of our lives, a shelter mutt we named Heartly because she truly won our hearts. In 2011, my facility expanded its outpatient program and I moved into the position I am in now. I run a therapy group for adults with depression and anxiety. So rewarding. I really believe in the power of a therapeutic group to heal and I get to see people start to rebuild their lives after they've fallen apart. I've also learned that things like shame, insecurity and feeling not good enough are universal even though when we feel those things, we assume we are alone. I'm currently working toward applying for a PhD program in Social Work. I love school. I always said I would be a professional student if I could. My other passion is travel. I want to visit at least one country on each continent before I die. Reportedly, there is a small window of time in which visiting Antarctica is possible, sailing from Chile. So yes, even Antarctica. I even fantasize about doing international relief work, specifically working with an organization like Amnesty International or UNICEF and rescuing girls from human trafficking situations or doing disaster mental health work. Oh yeah, I guess I should mention how I lost my arm, huh? Funny, it's such a tiny part of my identity that I often forget about it. I could never call myself disabled and I have never been into the victim role. I am a pediatric cancer survivor. I dealt with it from ages 14-16 and had my left arm amputated at 16. After that, I've been given a clean bill of health. It feels like another life ago to me.
I’m Bob Tessier and I have been an LAE for ten years. I live in Western Kentucky where I own a building contractor company and we are Distributors for Jim Barna Log and Timber Homes. I was a teacher in Florida before moving here. I also like to build furniture and hunting. I do some chainsaw carving when I find a piece of wood that has something hidden inside.
After my accident I was back on the job within two months, working and learning how to adapt and overcome the obstacles put in front of me. I was fitted with my first arm 3 months after the accident and have been wearing one ever since. I told the prosthetics guys that they better build it strong because I was going to test it. And I have over the last 10 years. My latest arm is a full blown myoelectric with the BeBionic hand and a Utah arm with powered elbow and wrist. I have had it close to 2 years with limited problems, except when I broke it, but it is starting to need a tune up or maybe a slight overhaul. I also have a full body powered arm which is my workhorse and a myo controlled hook with body powered elbow that is my backup arm. These have all come from the VA in Nashville Tn.
I was 52 at the time of my motorcycle wreck and I felt there wasn’t anything I couldn’t do. At 47 years old I won an AAU international power lifting competition setting a world record for my age group and class. So when I woke up in the hospital and realized what had happened I had some adjusting to do. But the drive I had before has kept me pushing on to try to do more. Like most amps having to ask for help doing anything went against my core. As time has progressed that is easier to accept as I have realized that people aren’t looking down at me for needing help, I am helping them to learn to give more. Giving seems to be the one thing I see that God has blessed me with. I see this in the way that different groups of Amps reach out to each other and others. Maybe it is because we all have had someone care for us that we appreciate it more and want to give back. I keep searching for ways to give back.
I died four times on that day long ago and I decided there was two things I could do after that. I could laugh and live or cry and die. I choose laughing.
My name is Tyler Throneberry I am 22 years old and attend college at Middle Tennessee State University majoring in psychology. At the age of 2I was mauled by three dogs in my backyard in Smyrna, Tennessee. I lost my left arm at the shoulder and I have facial trauma. Growing up I never saw myself as any different than anyone else. I started playing baseball at 5 and played all the way till Middle School where I started playing soccer and football. I also wrestled all 4 years of high school. To me, it's never saying that I can't do something, but figuring out how I can. Just last summer I started working towards my skydiving license with the help of Tommy. At 14 I spoke with the Tennessee legislature to strengthen dog leash laws and to strengthen penalties for owners who have dogs that have bitten someone. Don't get me wrong I still love dogs! I have a 3 year old husky named Loki. I believe that it's not the dog but the owners who can make them violent. My goal in life is to use my story to strengthen others with limb loss and to show them that they can do whatever they set their minds to. Feel free to add me on Facebook. facebook.com/tyler.throneberry.1
As I am sure you all know, life is full of obstacles and difficult decisions; but, at the end of the day, as we are relaxing with a glass of wine in hand we reflect back on those decisions and hope we made the right one.
Neurofibromatosis has always been a part of my life. But, I never really thought anything of it until my sophomore year of high school. At that point, all I knew about NF was that it was the reason I didn’t learn like the other kids. In elementary school, I got taken out of class to practice my coordination skills, I was put in a separate room to take tests, and teachers gave me supplemental work to do. I almost failed 5th grade. I struggled with math, or anything math related and reading comprehension. I hated learning. Luckily, I had a great teacher who installed a confidence in me that no other teacher cared to do. However, I still struggle with math and have difficulty in that aspect of my life.
I think we can all agree that being a freshman in high school is hard enough, let alone spending more than half of it on crutches. I had an extra bone in my foot and got it removed November of my freshmen year. I was on crutches until April. Once that had healed a very large plexiform neurofibroma began to grow in its place. In the beginning it didn’t really bother me. I still worked, went to the gym, hung out with my friends and did things teenagers do. However, it began to grow bigger and it got harder for me to put on socks and sneakers. The plexiform peaked over the side of my shoe like a giant blob. The kids at school began making comments, so I just wore pants all the time so no one could see it. I just thought how lucky I was that I was able to cover it. I told myself repeatedly that the other people who have these plexiforms have it so much worse than I do. “At least I can hide mine, so why am I complaining?”
Three years ago, I decided to have a debulking surgery to make the tumor smaller. At first, it seemed to help. It looked a little smaller, but not by much. Once that was healed, I again went back to my usual routine of gym, working, school. But not soon after the surgery I started experiencing a great deal of pain and discomfort along with a plexiform that seemed to have a mind of its own. It became harder to do everyday tasks. I was confined to Ugg boots and flip flops, I couldn’t go to the gym or go running, I had to cut back on my hours at work, it hurt to drive or sit still for more than 20 minutes. I just felt like so much had been taken away from me. In order to get the root of the problem, I went through PET scans and two biopsies. Those showed a change in the cells which was why I was having so many problems. The problem with plexiforms are that once the cells start changing, they can become cancerous.
Through many doctor visits, I decided, with the support of my doctor, friends and family, that amputation was going to give me the better quality of life. I would finally be able to live a pain free life. I could return to doing the things I love and be able to do things I’ve never been able to do, like wear those awesome heels.
Although, this is not a decision that I would have ever imagined making at 24. But, not for a second do I have any regrets, I just know how happy I will be down the road.
9 months later I am still very happy with my decision. I started back at the gym, I am back to waitressing, and doing an internship so I can finish school. I even started doing yoga! Overall, I feel like I am stronger now than I ever was before. Having a good support system was definitely crucial in my recovery. Becoming a part of the empowering amputee website was so helpful in more ways than one. It was nice to know that people were there to help me who have been where I was.
Unworthy is the unforgettable true story of murder, conspiracy and ultimately...redemption, as one woman struggles to overcome a lifetime marked by tragedy and betrayal at the hands of her own mother.
"I see people all the time that get stuck. I was one of those people. Picture one of those big mazes made from hedges in England and compare it to life. People get lost trying to find their way through, one dead end after another. So weary they just give up and think this is as good as it gets, or they don't deserve any better. I am living proof, that is a lie. Why was I ever born? What was it all for? I finally got my answer. For you... And you're worth it. Just the fact that you were born makes you priceless. I'm glad you're here. Come with me, I know the way. I know who Kim Wohlert is. I am.... worthy!"
You may purchase her book by clicking on the book below.