So many of our participants have such incredible stories about their journey and what this group means to them that we decided we needed a special area to share them. We are always amazed at the depth of courage, strength, and perseverance of our participants. Although none have traveled an easy road, their stories are often full of hope and inspiration while their resolve is crystal clear… never, ever, give up! If you have a story to share please send it along, we would love to hear from you!
Dan and JoJo
Hello! We’re Dan and JoJo. We are a happily engaged couple planning to be married sometime this year 2018. Dan acquired his TBI in 1994 when he was thrown from a horse. He also had a stroke in 2014 while in the middle of surgery for a brain aneurysm. JoJo acquired her TBI in 1998 when she fell in the carport of her family home while being transferred from her wheelchair, which she uses due to Muscular Dystrophy. We met through our involvement in theatre and instantly became friends. Once we got to know more about each other, our relationship moved beyond just friends and we’ve been moving forward together ever since!
Although our age gap is 34 years apart, we are definitely two peas in a pod! Due to both being TBI survivors, in addition to our own individual needs, we both have an understanding and patience with ourselves and each other when effects from our TBI or other disabilities come into play. We also have a great sense of humor about it all too.
WMF is important to us because it is nice to get together with others who know exactly what it’s like to do things a little differently. There are different levels of TBI’s and various stages in recovery and as survivors to go through, and everyone in WMF understands this and therefore are very welcoming and holds activities that are accessible for all. Thank you WMF, we love you!
Follow our journey at https://www.facebook.com/danandjojosworld
My name is Kurt Fulton. I’m 36 years old. In December of 1998 I was in a car accident where I received a TBI.
Resulting from this event you could say I was reborn. I had to learn who my family was again and how to do everything all over again. My friend list went from many to one.
We’re Moving Forward gives me a chance to get out and go to many different events like bowling, eating out or going to a movie. I am glad WMF exists to give me an outlet for social interaction.
I’m Erika. I was born with anoxia. I was put in an incubator and was in the hospital for 21 days. I was put on seizure medication to stop the seizures and thankfully no longer suffer from them. I developed physically perfectly, but as I grew older my mom noticed that my memory was impaired from an early age.
I grew up thinking that I was alone in my situation. I grew up looking completely normal, but always forgetting things and people giving me weird looks because I looked unintelligent. I lost friendships because I would forget appointments and would forget things we discussed and it made it look like I didn’t care although I did.
This TBI group has helped me that all these issues are okay; all TBIs look different. It’s so great to be able to talk to others who really understand you… I am so thankful for this group because it gives me HOPE! I have struggled in keeping jobs because I didn’t know how to advocate for myself and how to search for the right job. Now I am in rehab and it has helped me cope with my disability so well!
As told to survivor, Sandra Franco-Larson
Before her brain injury, Ally identified herself as a student/athlete and played softball. She was a pitcher for both her High school and club softball teams. During her junior year of high school, Ally had surgery to repair a torn rotator cuff, a common injury among pitchers. However, this didn’t deter Ally from her dream to play Division I softball at a University.
On December 3rd of 2015, Ally walked home after softball practice and was hit by a car. A driver made a left turn on a red arrow light as Ally crossed the crosswalk of the intersection between home and school. When paramedics arrived, the situation looked bleak. They worked to save her life and assessed Ally’s best chance for survival would be transported to the hospital by helicopter. However, in route, Ally slipped into a coma.
Her injuries were life-threatening, and doctors did not expect her to live. If she survived, they couldn’t see how she could have much of a life. Ally’s injuries were to both her frontal and temporal areas of her brain as well, as some bleeding in her brain. She fractured the back of her skull, sinus cavity, cheek bones, and ribs. She had a broken tibia, a torn knee ligament, the PCL in one leg and had multiple broken bones in her feet. However, Ally didn’t find out about the break in her leg or the multiple broken bones in her feet until she consulted an orthopedic doctor about repairing the torn PCL months later in Arizona.
“Click Here” to read the full article Sandra wrote in her Survivor 2 Survivor Series.
“I don’t know how I’m doing so well. Nobody does. I am so blessed, and I love to say that God is on my side and He has a purpose for me here. He has helped me through this whole strengthening process.” That’s what she wants to do is to be the best she can be. She says, at first; felt her life was over and she felt so alone until she came to W’re MOVING FORWARD! and CTN. Now, she has friends who understand her. She tells me she’s not giving up. She is going to go back to school and go to Physicians Assistants School. She’ll have the empathy for young people who are struggling with a life changing trauma, illness or brain injury survivor. She says she’s stronger, loves herself and loves life.
As told to survivor, Sandra Franco-Larson
Sacramento, California: April 7, 2005
Bob Williams of Scottsdale, Arizona, was on a business trip in Sacramento, California when he had a stroke, changing both he and his wife Lizbeth‘s, life as they knew it. It started with a severe headache. Bob was rushed to the hospital by ambulance. The cause was a cerebral aneurysm and he needed to be treated immediately. To stop the aneurysm from rupturing he underwent a noninvasive procedure called Coiling. The doctor inserted a thin platinum wire through a blood vessel in the groin area and up into the aneurysm. Coils are packed into the ballooning aneurysm, blood coagulates around it, closing the opening of the aneurysm thereby reduced the risk a rupture. That should have solved the problem. However, a coil slipped out of the aneurysm, and traveled to another part of his brain and ultimately caused a stroke.
Meanwhile, his wife, Lizbeth Congiusti was home in Arizona, unaware of Bob’s condition until the doctor phoned at 2 am to inform her Bob had a Subarachnoid hemorrhage, a stroke caused by a bleed in the brain. Lizbeth took the first flight available to Sacramento and was joined by her sister,
later in the afternoon.
After the first procedure failed, Bob had a second more invasive procedure (Surgical clipping) to contain the aneurysm. Lizbeth had to do one of the
hardest things ever in her life. She called her step-sons telling them to come see their father because she didn’t know if Bob would live or die. Fortunately, the three and a half hour surgery was successful. Bob spent 41 days in the California hospital before he would be able to travel and continue treatment in Arizona.
Flying these days can be stressful for people without any medical issues.
Hi my name is Brandon and this is my story.
On December 23rd 2004 while driving to El Paso Texas, my car hit black ice that covered the highway. This caused me to be in a devastating accident. As a result, I sustained a traumatic brain injury. I was in a coma for three months and in hospitals for eight months. With deficits of short term memory loss, speech and cognitive disabilities, being legally blind and left side paralysis. My life was changed in a matter of seconds. Recovering from a TBI is a lot of hard work and dedication, but it is all worth it!
What has affected me the most is short term memory loss. I use association, grouping, visualization, writing, and repetition. Everybody uses all these memory strategies subconsciously, but if you have a brain injury you purposely have to use them. Another difficulty I had to overcome was speech. Due to the brain injury I was considered legally blind. With two eye surgeries and prism glasses and time, my vision has improved some. Although I do know accidents happen, I also know that things could have been a lot worse. My recovery has been slow but filled with many goals and achievements.
Ronda, Linda and Tara are parents of three brain injury survivors in our group. This group started back in 2006 and evolved from a support group to an organization when three moms decided to take it to the next level. These three awesome women put in hours without payment, yet get payment in what results from We’re Moving Forward. I always love going to the social gatherings which are planned by this organization. My friends are all amazing and we can all relate because we know what its like to have TBIs. I can’t speak for everyone but I know how important life is and I don’t take anything for granted. As for the group we are all happy to see each other at group gatherings. These gatherings are some of the few places we feel 100% accepted.
I look forward to the events through out the year. A few of these exciting events I look forward to every year are the Up North, the Christmas party, Dolly Steamboat, picnic barbeques and movie outings here and there. I am so happy to be a part of this amazing group; we’re moving forward!
Hello. My name is Kurt. I was injured in 1998 during a freshman football game. I am now 31 and I am in a work re-entry program called CTN. I am going to start the job search soon.
After my initial injury (during the game), I appeared okay. It was not until the next day that I began to have symptoms of my head injury. I spent 8 weeks in a coma, then 9 months at Craig Rehab Hospital in Denver, CO. Due to my injury, I have difficulties with: pragmatics, physical mobility, and speed of processing. Despite these difficulties, I have a stronger faith and better attitude about life.
My life is so much better since joining We’re Moving Forward, because I am doing more for myself. I enjoy going to dinner, going to the social gatherings, and seeing the friends I’ve made in such a short period of time. The group has also been good for my family members. They enjoy the events and socializing with other caregivers. I look forward to seeing everyone at the upcoming events!
My name is Lance. While driving my 1985 Goldwing motorcycle somewhere south west of Grand Junction, Colorado, I fell asleep, cold sober in the middle of the day. I almost successfully recovered when I ran out of road. Never a good thing on two-lane black top in Colorado since you tend to run out of ground, too. Fortunately, there was an off duty RN and her EMT husband in the car immediately following me, and the car following them contained a volunteer fireman.
They tell me I was in a coma for 4 days. The last thing I remembered when I woke up was completing the front brakes on my truck so it would be available when I returned from a three-week motorcycle touring vacation. But, I could not remember the work week nor leaving on the vacation. I found myself to be extremely exhausted all the time–more exhausted then I had ever been.
Through the fog of exhaustion, I slowly realized that I had no idea of what I knew or did not know. I started working full time while still in high school–which I successfully completed at age 17–then went on to attain degrees in Physics and Electrical Engineering. All while working full time as a millwright. So I have come to think of myself as being self-sufficient on many levels. But after the accident I found myself not learning new things, rather I was discovering that I knew them. I was also not adjusting my language to whom I was speaking. When I described this to the doctors and nurses as: “I messed up the indexing of my database.” They said I was speaking gibberish. But, a fellow engineer, told the nurses that he understood exactly what I was saying. Four years later he is still making fun of me thinking that a non-engineer would understand engineer speak.
Many changes have occurred in my life since that vacation I do not remember ever having taken. Some changes are because of the accident and others started before it happened and have since come to completion. But, I am now back to work full time as an aeronautics software engineer, although in a different project and area.
I have found “We’re Moving Forward” offers a safe harbor from the duplicity of the world. This is a group of people who accepts me for me. A group that sees me as a person not the remains of a brain injury. An individual with all of the strange history and viewpoints that come from living. A group without poking and prodding, with their own investments in my state of being. A group that understand everyone is unique in their abilities and limitations and only wants what is best for all, without defining what is “best”.
Since Jan. 2005 I have worked as an in-home caregiver for a young man who has a significant Traumatic Brain Injury, TBI, sustained following a car accident. He didn’t have any broken bones, but his head was really shook up. The brain injury was so severe that he is not able to walk, talk, or care for his own personal needs. He communicates with eye blinks and facial expressions. Most people cannot understand him, but he and I developed a unique form of communication. From the start, we’ve shared a special bond. Little did I realize then, how much we had in common. he’s a practical joker. Some mornings I would arrive at his home and he would completely ignore me. He wouldn’t respond to his name. I would go through several names. finally, he responded…to my name. So that day he was me. My disability? I have a TBI.
In 1951 I was born with anoxia, no oxygen getting to the brain. I couldn’t breathe. The doctors took me immediately to a room with an oxygen tent and put me in it to help me start breathing. After 3 and ½ days in the tent I started to breathe on my own, if I hadn’t I wouldn’t be here to tell you MY STORY. The doctors told my parents during the time I was in “isolation”, that if I survived I would be seriously brain damaged and more than likely be a vegetable. Hmmm, I thought, I could be a carrot. I didn’t know much about brain injuries until I started working for ABIL now AB ILITY360.
I learned that TBI’s are like snowflakes, no two are the same. I related to persons with TBI’s because I have one. I really care for them, one in particular. Throughout my life it bothered me whenever someone would see a person with a disability and say something like “if that was me, I wouldn’t be seen in public. Unfortunately, that still happens a lot today. It’s an ongoing task to educate the public to the fact that persons with disabilities are people too. We deal with the same things that “NORMAL” or differently abled people do.
I AM MY OWN NORMAL AND I WON’T BE ANYTHING BUT MYSELF, except of course when I am on stage acting. 0n stage I am a chameleon changing into who I need to be. Today, I’m Steve and right now, I need to be me.
Hi, my name is Daniel Cruz and I am 28 years old. I was born and raised in Hawaii on the island of Oahu. When I was eleven years old I somehow contracted viral encephalitis. I was in Intensive Care for a month and in the hospital for another month and then in a rehabilitation facility for 3 weeks. The two biggest problems for me are my seizures are still not controlled and my memory is pretty bad. I am very isolated socially.
My mom, dad and I moved to Glendale AZ in September 2014. I hope to make friends and get out more and do things without my mom and dad! I am glad we found We’re MOVING FORWARD.
Kuna & Evie
It’s funny how the strangest things bring people together. Evie had acquired a brain injury from a tumor in 2000 and Kuna received a Traumatic Bain Injury from a motorcycle accident in 2006. We both received treatment when it occurred. Both of us being in our 20’s, fortunately, were able to bounce back due to our family, faith and services provided by St. Josephs. We both attended Center for Transitional Neuro rehabilitation & support groups that were offered and conducted by St. Josephs and support from peers and parents who were in the same circumstances regarding brain injury.
We first met at a young adult Brain Injury Support Group. Kuna, at the time, was new to life after a brain injury, Evie, on the other hand had already been at it for a few years. We would occasionally see each other at different functions, and would talk very shortly. Kuna walked Evie out to her car one night after a bowling event for the support group and asked for her phone number. Evie being hesitant replied “no, but here’s my email.” Kuna didn’t even take it. Years passed and we would still run into each other. We eventually started dating and on 12/12/12 we became husband and wife. Both of us had lived on our own but used different compensations. As a couple living together we combined compensations. We both are stubborn and determined and that’s what drives us. We might bump heads sometimes, but the good thing about a T.B.I or A.B.I. is we tend to have poor short term memories and get over things quickly. Whether you have a brain injury or not there is always someone out there for you. Luckily for us we can both understand each of our difficulties & what the other can and cannot do. The support groups & events like those offered through We’re Moving Forward are good examples/ ways of getting yourself out there.
You might not find that person right away, but keep attending the support groups and events. “Kill two birds with one stone”. I hope that gives a good story as to how a brain injury couple meet each other. It just so happens we have the injury in common!
Hi my name is Kayla Routhier, I am 19 years old almost 20 as of July. Many people do not know this, but I had a brain tumor at age 12. In June of 2012 it was classified as stage 4 cancer and removed right in the nick of time before paralyzing me from my neck and down. I am willing to share my story to expand my ‘branches’ out in the community.
In June 2012, I was enjoying my time Father’s Day at the Thunderbird speedway to watch funny cars racing. It started off to be as a great evening until we started to walk back to the car which was very devastating, I felt like a “crazy blind person.” I had radiation for 9 months and chemo for 1 1/2 with blood transfusions and MRIs every so often. After all that, and getting the help I desperately needed, I started participating in the We’re Moving Forward group which has helped me get into more activities socially and physically.
I am Adam Pepiton and I was a victim of a drive by shooting, which happened in September of 2010, in which I was shot in the head and it has had a massive influence on my life. This injury gave me a different perspective on things that most people take for granted such as my physical surroundings, work, social life, friends, and family.
I volunteer at several different places to gain work experience and currently am taking college classes at a community college. An area that was affected is that I have to learn how to be more social. My injury caused aphasia and I have a hard time with my word retrieval. At times it may take me several minutes to express how I feel or even come up with a proper response to a question or comment. Socially it is hard for me to connect with people because I often do not know what to say quickly in response to them and I’m extremely shy when out of my comfort zone.
To connect with people I have joined several different sports programs, support groups and We’re MOVING FORWARD! When it comes to making new friends I have a hard time outside of my old friends, the support group friends and the friends made thru We’re MOVING FORWARD which I have made over the years. The friends that I have made from the brain support groups and We’re MOVING FORWARD will stay close to me because we all have our injuries common. We also get together at least once a month for some kind of event. When I am out of my comfort zone, out in the community, people usually just avoid introducing themselves or conversing with me a majority of the time so meeting new people is difficult. This is also due to my shyness.
In conclusion if you are going through a bad time in your life you should make little changes at a time to see what makes your life more enjoyable to yourself. All it takes is small forward steps to make major changes in your life and participating with We’re MOVING FORWARD is one you can take.
Kevin and Margarita
We are Kevin and Margarita Bright and we are the caregivers for our daughter Deanna who had a stroke when she was 18 days old. It was not an easy way to come into the world, and we had many questions that the doctors could not answer. She is one of three, we have triplets, Deanna, Alexandra, and Juan. We were fortunate that they were all able to start school together at age 5.
As Deanna grew older she had her fair share of surgeries and recovery therapies. She has weakness on her left side and some processing deficits. Her most difficult problem had been the onset of seizures as she grew into her pre-teen years for which we sought care atBarrow Neurological Institute. She works hard at living with her challenges and we are there to give her support when we can.
We found the Were Moving Forward group when we were at Barrows and St. Josephs Hospital. It is a good group for Deanna and for us. What the group helps us to do is to support one another and we like the support that we get from the other caregivers, and Deanna connects with the survivors. We share and discuss brain injury life, but when we have activities, which is most of the time, we all mix together and hang out and enjoy the day.
Sandra and I had only been married for a little over a year when our lives were changed forever. In December of 2005, Sandra had a blood vessel which burst in her head causing a stroke leaving left side weakness. Luckily, Sandra had already been admitted to the hospital otherwise she may not have survived.
I was fortunate enough to be able to take several months off from work to assist with physical therapy, taking Sandra too many doctor visits and assisting at home. Initially, it was very hard to watch her struggle to feed herself, sit up in bed, and eventually walk again, but Sandra had always been a fighter and had told me on several occasions, she “Comes from a long line of ‘Tough Old Birds’.”
After years of therapy and isolation, we were so glad to have found a group different than support groups within “We’re MOVING FORWARD!” Sandra and I have met so manywonderful people who understand the journey and the activities “We’re MOVING FORWARD!” continues to be something we both and even our daughter, Sonae can enjoy. Now, it’s been over 10 years and Sandra’s spirit, love for life and family continues to inspire me. Sometimes the up’s and down’s of life can truly make you stronger.
Hi, my name is Diana. I had a stroke when I was two weeks old. My family and I have been there for each other through it all. My brain injury is a little different than others because I have had mine essentially my whole life. My stroke has affected me cognitively and also with weakness on the left side of my body.
From February 2013 to July 2014 I had rehab at Barrows. It was one of the best things that happened to me, it also lead me to We’re Moving Forward! This is an awesome group that has so much to offer. I love being a part of this wonderful group.
On Saturday February 6, 2010 I woke up at night with nausea, vomiting, weakness… it felt like the flu… no it think I had this before. It felt like the food poisoning I got during my global travels. My wife said, “Should I take you to a Hospital?” I said, “No call the paramedics.”
It wasn’t the flu or food poisoning or a drunken stupor; it was a Stroke. I had a Cerebellar Stroke with Dysarthria and Ataxia. I was 54, and overnight I had major, major, impairments in communication, muscle movements and physical coordination.
At first my family was devastated. But when they saw that my attitude was healthy & positive they thought “WE CAN GET THOUGHT THIS.” They pulled together and took control. They helped me to do simple things again like talk and walk.
I am now 5 years into my journey and it’s far from over. I can’t run, my memory is shot, I “run out of gas”… it’s who I am now. You can’t make a leopard change its spots, but, I look forward to a different future. I take pleasure from the small things in life, I take better care of myself, and I appreciate my family even more.
My name is John and I suffered a severe traumatic brain injury in a motorcycle accident on March 10, 2007. I spent a good time thereafter in the hospital and different rehab programs. It’s been a long and difficult journey since. Trying to rebuild my friend base has been tough because I’m not quite the same person I was before my injury. People don’t always understand what my life is like with a brain injury and sometimes they have a hard time accepting who I am now.
One of the hardest things for me to deal with now is that my vision was also affected by my brain injury making navigating and getting around on my own difficult and unsafe at times. But all of the people involved with We’re Moving Forward understand my disability which lets me enjoy the activities more because I’m not worried about getting lost or separated from anyone I’m with because we all look out for each other. I love all the great friends I’ve made and all the different activities we do together. Life would be very different for me today without this group.
Before the day that I had my rollerblading tragedy, I was living with a cognitive learning disability due to an ear tumor I had when I was four years old. I struggled through school and making friends and a number of different things that come naturally to other people. After falling down from rollerblading and having a seizure I felt like a baby again because I had to relearn how to do things like eat, walk and tie my shoe laces again. I had a seizure because my salt level was low and I stopped taking my depression pills cold turkey. I wish none of these tragedies happened to me but I am learning to deal with it.
I thank god that I am alive today! Meeting Kurt at the Jimmy Wayne Concert was awesome because now he is my best friend. We’re Moving Forward is so much fun because of all the different outings that we go on. I love seeing my friends from CTN (Rehab) again and just being out of the house and socializing with other people like me.
I am from the small town of Spearman Texas, population of 2,916 at the time. I had been driving for about 4 months and worked at a privately owned clothing store. Helping this one boy who seemed nice find some clothes, led to a friendship and almost killed me. He lived in a smaller town about fifteen minutes away.
Well those fifteen minutes led me to a 3 month coma, a Med-Evac ride, and a five month hospital stay. The helicopter had engine troubles on its way but found me in a field halfway between the two towns and managed to get me to the nearest city which was Amarillo, Texas. I was in Amarillo at Northwest Texas Hospital ICU for three weeks. Then I was flown to Dallas and was directed to a children’s hospital, Our Children’s Houseat Baylor. I was at that rehabilitation hospital for four months. I was finally sent home in April of 2003. I was home schooled that summer and was able to attend school and graduate with my class of 2004!
I moved to Phoenix in 2011. My cousin, who had a cousin that already lived here, looked up Spofit, a sports and recreation center for the people with physical disabilities, and a support group where I ended up meeting others involved with this activity group. I have been a participant In this group ever since!
Since I have lived in Az and become part of the brain injury community, I no longer feel alone and I’m more inspired than ever to be productive and communicative! Of course I have days when the motivation to start the day is gone. I just realize there is no person on this planet who doesn’t have those days. This is the best group of friends I could ever possibly know! I feel happy to be here in Phoenix since this was always a dream of mine. I wanted to live here independently but because of my turn of events I thought my dream of living here was stolen from me. It wasn’t and I’m still enjoying my life regardless of my disability.
I have had two brain surgeries so far, first one I had when I was 7, second one I had at the age of 19, the reason why is I have a tumor called a cavernous malformation or “angioma” on the tip of my brainstem. After I had surgery I never knew I had a brain injury, then I come to find out I have an ABI!!!
This group has taught me to not be ashamed of my brain injury, everyone in this group (excluding caregivers and parents) has some kind of brain injury. If you’re at all hesitant about joining this group, DONT BE! I also love how different the people in this group are, it’s a very fun and welcoming group to be part of, you will absolutely love it…
After my injury, it seemed difficult to fit in with others or to have them understand my speech. In “We’re Moving Forward” group, I can see the commonalities between all of the members. I love to actually feel like I fit in someplace and not feeling like a third wheel or an odd man out. I have made many friends with many different challenges. We all help each other out and watch out for one another. This is one place where I belong.
I am a fifteen (15) year survivor of severe traumatic brain injury. The recovery has been a complete uphill battle. “How long was my recovery?” you might ask. I will answer that question when it is over with. I will always be in the recovery process. I am a different person now. I see life a little different. When I was 20 years old, I was volunteering with my school to raise money in order to help people with developmental disabilities. I was hurt in the process. I fell fifty feet (50’) from a tree and landed on blacktop. I broke nine (9) bones, collapsed one lung, and suffered a severe traumatic brain injury. I lost everything I had. My life turned to hell. I was ashamed of my brain-injury. I tried to hide from it. I pretended that it never happened. I spent many years believing that I was the same person. ‘The accident didn’t really change me,’ was the false statement I believed. I finally accepted it. I now wear my brain-injury as a badge. I am proud of it. I play an active role in the brain-injury circles. I am now about educating the general public to the depths of brain-injury. I remind everyone that having a brain-injury is not a character defect. It is one of the things that happen in life.
It took a while before I realized the only people who will ever understand me are fellow survivors of brain-injury. For that reason, I have joined every support group I can. I have finally found a group where I feel at home. ‘We’re moving forward’ is that group. It is a group of survivors and family members who know that we still want to have fun, even though we have a brain-injury. We still want to experience life and all the good things it has to offer. As survivors, we need to do things a little different than average, but the group knows that and plans accordingly. ‘We’re moving forward’ is the best place to be for any person with a brain injury.