Hello! I’m Holly. I am a wife/girlfriend/ caregiver for Mike. He is a C6/7. We have been together since 1994. Mike was hurt in a car accident in 1984. I hope to get Mike on here too! I hope to offer advice to new folks as well as receive advice from anyone!
Hi I'm Emma. I've been a T12 para for 22 years after a fall. I enjoy handcycling, wheelchair basketball, kayaking, backpacking and long distance National Trails and cycle trips. I'm a firm believer that staying physically fit and eating well helps you keep mentally fit. I like to wake early and see the sunrise, I think it's the most beautiful time of day to have time with oneself. So I go to the beach everyday to watch the sun and walk my dog. I practice yin yoga, which I find helps with my spasms and keeps me flexible. I work at home home full time, and I live with my husband, dog two cats and chickens!
Visit the Spinal Cord Weightlifting Group I will be providing facts on the importance of weightlifting with a spinal cord injury. Also I will be providing tips and proper techniques to avoid and prevent injury. Feel free to post in there your tips because it can really help out someone that is a similar level each one teach one
What’s up everybody? My name is Trevor Hayden and I have a c6/c7 incomplete sci now for about 2.5 years. I was in a truck accident that left me paralyzed but I’ve hit the ground running (or trying) from the beginning. I’ve really dedicated the last couple of years to my recovery and have recently started back to work and trying to get more involved in the sci community. I am currently training in an indego exoskeleton and am going to soon be approved for home use! So that’s really my main goal at the moment is to getting back on my feet and walking any way possible! I look forward to contributing what I know to the forum and also learning from all of you!!
Hey everyone! My name is Zack Collie and I am 24 years old. I have a C-4 incomplete spinal chord injury. When I was 15 years old I broke my neck diving into a wave at the beach and hitting a sandbar headfirst in 2010. Since then, I have graduated from high school, received a Bachelors degree in Human Services, and currently in my 1st year of grad school. I am going for a Masters in Counseling. I have my own YouTube channel where I post videos about my life. I want to help educate as many people as possible about SCI's. I live with my girlfriend Bree who helps with my care and we have been dating for a little over a year. I am so excited to to be a part of this group and share whatever I can with all of you(:
P.S. I am a open book!
Accept what is, let go of what was, and have faith in what will be. -SONIA RICOTTI
Hey. I am Kyle. I was born with Spina Bifida. For those of you that do not know, SB is a developmental disorder where the spine does not form properly in the womb. This has made me an L2 complete. I will be 22 in March and have been in a chair my entire life. I am here to learn from others as well as potentially share some of my knowledge with some of you. That being said, feel free to message me any time about anything. Keep in mind, i am a college student so it may take some time to respond.
Spotlight: Leo Pergson Posted by Reeve Staff in Daily Dose on June 11, 2018
SCI Spinal Cord Injury "See US" Community" On July 11, 1961 after Diving Accident in Kern River Bakersfield CA/ Compression C-2 through C-6 Injury Complete Quadriplegic/ Now after (57) Years Living a Better "Quality of Life" as a Long Term SCI Spinal Cord Injury- With my Mothers Love and Family "Never Give Up Attitude"Leo Buddy Pergson/SCI Spinal Cord Injury in July 11, 1961 now (57) Years Later/Just (17) Years Old right out of North High Bakersfield California/ In July 11, 1961 after Diving Accident in Kern River Bakersfield California I become an Instant Member of SCI Community Spinal Cord Injury patients/ Now to-day (57) Years Later with new attitude and better outlook on SCI Medical Research Technology today that now prolongs the life of an Acute & Long Term SCI Spinal Cord Injuries today living a longer and better SCI "Quality of Life" Spotlight: Leo Pergson Posted by Reeve Staff in Daily Dose on June 11, 2018
# Health, Mobility
“It is important to stay active and stay informed. I survived by not giving in to pains but by doing the best I can. Sometimes you just keep breathing and accept and embrace the great challenges of your disability journey by giving the best of what you have every day.” - Leo Bubby Pergson
Leo Bubby Pergson can sum up his best advice for living with a spinal cord injury in three words – attitude is everything. Living with a spinal cord injury for 57 years, Pergson certainly knows a good deal about the topic.
“I was an active 17-year-old high school student in 1961 when a diving accident in the Kern River in Bakersfield, California, changed my life forever,” said Pergson who is from Willows, Ca. “The doctors gave my parents three days for me to live. The compression was from the C-2 through C-6 vertebrae with limited sensory and complete paralysis below my shoulders. I spent four months confined to spinal traction, lying flat on my back on Striker Frame and regained only very limited movement in my lower extremities.”
With access to only general practitioner medical care, Pergson’s injury, like many at the time, was deemed complete with no hope of recovery a year after his accident and he was transferred to hospice care. In 1963, he was moved to Casa Colina Rehab Center in Pomona for three years where he began his long road of therapy, eventually standing in parallel bars and then walking on crutches.
“Even after all these years, revisiting and reliving my personal SCI experience is never easy, but hopefully my last 57 years will inspire others to see what is possible,” said Pergson who is now 74 years old. “Whether complete or incomplete, every individual SCI injury is different. The journey to recovery is physical and mental but what makes the difference is long-term quality of care and quality of life. The key to survival is a ‘never give up’ attitude."
Over the years, Pergson went to college and worked in various jobs. He is quick to point out that the support of family and friends has made an enormous difference in his life starting with his mother’s never-ending love and belief in his recovery and continuing with his wife and daughter who doctors called a miracle baby.
“My family never gave up on hope and instilled in me a passion for living my life every day, in every moment,” said Pergson. “I take great joy in seeing my three grandchildren grow up and marry; I enjoy the smell and warmth of a family gathering around Thanksgiving table and listening to my friends bragging about their great everyday triumphs.”
Although there can be many long days and nights, Pergson believes that reconciling with and accepting moment by moment, day by day living is an important way to manage the fear of isolation and loss of independence that often comes with living with a spinal cord injury.
"Your quality and awareness in your everyday surroundings is your lifeline to your long-term SCI quality of life," said Pergson. “I like the idea of finding a new adventure every day, taking precious advantage of the life and times God gave me. I focus on being able to love, to cry, to never want to give in and using everything, every muscle in my broken paralyzed body that the Casa Colina Rehab Center was able to find.” Pergson points out that our perception and definition of quality of life often changes over time. As a young person, we mostly focus on physical abilities, leisure activities and employment, but as we get older, we place more emphasis on the importance of family, love and social relationships.
“Quality of life for spinal cord injury survivors increases over time, particularly after the first year,” said Pergson. “The quality of life for anyone is not confined to the disability in our lives, but the ability to adjust and continue to find self-worth in living and searching for happiness. Just look at Stephen Hawking and what he was able to accomplish.”
As one can imagine, Pergson is also thankful for the advancements in medicine and technology available today. He uses the internet and Facebook regularly to connect to information and others living with a spinal cord injury. He often turns to the Reeve Foundation website as a valuable resource.
“One of the greatest strides over the years has been in the ability to live more comfortably,” said Pergson. “Improvements in pain management, wheelchair positioning and hygiene care have made an enormous difference as has the focus on SCI financial needs and adaptive technology which help me to enjoy life to its fullest potential.”
Although he is thrilled with these huge breakthroughs, Pergson strongly supports the need for additional funding to bring more awareness and advocacy in finding a permanent cure for spinal cord injuries.
“It’s like taking a rocket to the moon. Everyone thought it was impossible until we did it. A cure for paralysis is out there,” said Pergson. “Christopher Reeve lived almost 10 years after his spinal cord injury and spoke eloquently about moving forward. He viewed his time after his injury as a difficult, but ‘extraordinary journey’ and I couldn’t agree more.”
We would love to get to know you. Please tell us who you are. My name is Tricia. My husband was injured in a bike accident in 2015. His injury is at T4. I would love to connect with this community!
Hi, I'm Jim Lubin. I've been a C2 quadriplegic, paralyzed from the neck down and dependent on a ventilator to breathe since I was 21 coming on 30 years now. I woke up with a pain in my shoulder. About an hour later the pain intensified and I suddenly could not stand then stopped breathing. I was resuscitated and taken to the hospital. Long story short, after two weeks I was diagnosed with an autoimmune disorder, acute idiopathic transverse myelitis.
Hi, I'm Jim Lubin. I've been a C2 quadriplegic, paralyzed from the neck down and dependent on a ventilator to breathe since I was 21 coming on 30 years now. I woke up with a pain in my shoulder. About an hour later the pain intensified and I suddenly could not stand then stopped breathing. I was resuscitated and taken to the hospital. Long story short, after two weeks I was diagnosed with an autoimmune disorder, acute idiopathic transverse myelitis.
SPOTLIGHT; LEO PERGSON; Posted by Reeve Staff in Daily Dose on June 11, 2018
SCI Spinal Cord Injury "See US" Community" On July 11, 1961 after Diving Accident in Kern River Bakersfield CA/ Compression C-2 through C-6 Injury Complete Quadriplegic/ Now after (57) Years Living a Better "Quality of Life" as a Long Term SCI Spinal Cord Injury- With my Mothers Love and Family "Never Give Up Attitude" If you have any question you may have SCI Spinal Cord Injury/ Whether Acute or Long Term SCI Spinal Cord Injury/ I call "SCI Down Time" Being a Quad (57) Years since 1961 don't make me an expert on your family who is now today living a very personal complicated life/ living and suffering from an SCI Injury/ but if I can give you any advise/help on how your family can live "day be day" searching for a better and somewhat helpful way of life to help in any way to make it easier on facing a "New SCI day" for people to get to "See US" & "Know US" who are living in a very different "Quality of Life" but searching for the same needs for new SCI Medical Research Technology/ Let me share some part of my SCI life with you/ In 1962-1964 living in Casa Colina Rehab Center Pomona California/ I roomed with two other Complete SCI Patients/Lester/Terry/ we shared our SCI Lives/our Families/ we "Slept in same ward and "Knew Each Other" "Laughing/Crying/Sharing "OUR SCI" Lives/but what I took away from all that/is that we became a Community of SCI patients/and that's what this SCI Community is all About/Trying to make OUR Everyday SCI Lives/Families Just a Little Bit Better than the "Day Before" Taking each SCI step "Day at a Time"/ "Laugh/Cry/Love/" I will Give all I have to try & share with you my life & Dreams that may help you "SEE ME" "SEE YOU" "KNOW ME" and I don't know your personal everyday SCI challenges/But I do know and understand the Everyday SCI Challenges in a searching for a Personal/ Better "SCI/ Quality of Life" Leo Buddy Pergson/Willows CA/
Hello, I'm Jessica Baker, 30 years old and I've been a C4-C6 quad complete for 11 years. When I was 19 I was in a vehicular accident, I hit the back of a semi-truck and my car went under the back of it. I can use my biceps, but nothing below C5. I still miss what I could do before the sci, but I've found new forms of entertainment. I love going to concerts. I'm always looking for new adventures, going on a cruise to other countries, and weekend trips to a distillery/wineries. For the last 4 years my dad and I have lived together, and without him I wouldn't be as accepting of my life, or as happy. If anyone has questions about travel/accommodations I'm happy to help.
Hello I’m new here, my husband of 10 years is C5 complete. He broke his neck in a car accident nearly 30 years ago; and I am his sole caretaker. I have two sons in college, one son who is a junior in high school, and a full time job as a middle school special education teacher.
Hi. My hubby is C5 incomplete, for almost exactly 2 years now. It was a car accident and he was on a vent at the start, but we are really lucky as he has had some recovery of movement and can use both his arms. He is still gaining strength and has had a wonderfully positive from the start. We are both in our late 40s, and are still coming to terms with our new normal, but we do laugh a lot.
My name is Lauren Harmison. I am the CEO for Camp PossAbility, an adapted camp for young adults ages 18 to 35 with physical disabilities who have a typical high school diploma and use a wheelchair for mobility. We run for one week a summer in Martinsville, Indiana, just south of Indianapolis (for those who need to fly in--hint,hint!). Many of you would qualify, and our fastest growing group is our campers with SCIs.
My background is nursing and although I run the camp, I typically help with nursing skills (caths/bowel programs/skin checks) every night because I love doing nursing and helping empower others to be more independent with their care.
I have always had friends with disabilities; I would pretty much just introduce myself to people. I volunteered at an adapted camp in Missouri that I adored but realized that there was not a good adapted camp for adults who had high cognitive function, so I created one! The Reeve Foundation has sponsored our camp week twice. We have an amazing week of camp every year, and I run the camp as a volunteer.
We are also getting ready to add a skills training weekend for those who had limited therapy or want to work on skills in a small group (stay tuned for that or message me if you're interested!)
I love getting to meet people and be able to provide support and resources, so I have been known to email people or their families after their SCIs to give them support, a friend, and a resource. People appreciate that I am an RN so they can discuss bowel programs, catheters, etc. with me and can vent if needed, but they also know I will encourage them to seek resources and try new things. So I am always happy to talk and be a resource!
I'm so excited that the Reeve Foundation started this resource, and I hope many are able to benefit from it.
Attached is a picture of me at Camp PossAbility with one of my friends who inspired me to start Camp PossAbility! Definitely check it out and come play with us! www.camppossability.org
Hello, My name is Austin, I'm from Ohio and I am a T12 incomplete SCI. I sustained my injury from a motocross accident on June 18, 2016. I am currently living on my own and going to school to become an Occupational Therapy Assistant. I love trying adaptive sports and so far I have tried monoskiing, hand cycling, water skiing, and sled hockey. My favorite is Monoskiing and I now have my own monoski. Some other things I do is volunteer at the hospital I was at for my rehab as a peer mentor, and volunteer as a 4-H advisor. I hope to eventually become an OTA and work with others that have similar injuries. I still do a lot of the things I did before my injury like riding my motorcycle, an adapted Can-Am Spyder, go camping, shoot guns, and just doing anything with my friends and family. I enjoy helping anyone who has a SCI that I can because I feel that I have adapted very well and I want to pass that on to others to hopefully give them ideas or hope for their future because life is still great even from a wheelchair!
Hello! My name is Cindy and my daughter Beth has a spinal cord injury. I write about our new normal and the unexpected adventures after her injury, as well as the power of hope. I write a weekly blog, and my new memoir will be released in April, 2019. Both have the title Struggling and Serendipity. Beth fought for her independence, and I battled guilt for falling asleep at the wheel and causing her injury, along with long-term depression. I'm a peer mentor and guest blogger for the awesome Reeve Foundation! If you never give up? Hope wins.
Hi! I’m Ally! I’m thrilled to be a moderator for this community! Some of you may know my story from social media or People mag and news outlets, but for those who don’t, on January 31st, 2015, at only 19 years old, I was driving my 6 week old puppy, Lilly, to the vet for her shots when a hay truck that was carrying stolen hay was coming at me head on in my lane. I swerved to miss him and it caused me to flip end over end for 75 yards. I was ejected and thrown 50 feet from my car and landed flat on my back on the ground. I remember the feeling of landing flat on my back out of the air like it was yesterday. I remember my first thought being “Lilly!” when i hit the ground and I tried to get up, but I couldn’t move. I couldn’t feel. I couldn’t do anything. A few seconds later I remember hearing someone scream “say something, say something!” and all I said was “help.” I remember him running over to me and saying “I have help on the way, it’s going to be okay.” I don’t remember anything after that. I was put into an ambulance and taken to a local church where a helicopter could land and I was life-flighted to Grady Memorial Hospital in Atlanta. I died that day. I took my last breath when first responders put me in that helicopter. EMT’s did chest compressions the whole way there trying to keep blood flowing to my lungs. When I arrived in Atlanta, I still had no pulse and no blood pressure. I was rushed straight in the OR into immediate surgery so they could open me up and try to bring me back. My spleen had ruptured, causing all of my organs to bleed internally. They were able to remove it and stop the bleeding. At the time, I wasn’t stable enough for any other surgeries so they still weren’t able to see what other injuries I had. No one knew if I would even make it through the night. By God’s grace, I did. I stayed on the ventilator and breathing tubes in ICU and 2 days later, I was stable enough for X-Rays and CT scans to look for other injuries. They found that my entire spine was shattered into pieces, my spinal cord was severed, I had a C2 hangman bone fracture in my neck, 2 internal gastric tears and collapsed lungs. The next day, I went into an 8 hour back surgery, where they reconstructed my entire spine with rods and screws, and were also able to see that my spinal cord injury was at level T12, which leaves me paralyzed from the waist down. After my back surgery, I was able to wake up. I was still on the ventilator, so I couldn’t talk or eat or drink. I didn’t understand much of what had happened and what was going on. I couldn’t sit up, but I could use my hands, so I could write. I laid there every day writing notes to my mom and family members, my boyfriend of only 6 months at the time and my friends. Although I couldn’t see what I was writing and a lot of times they couldn’t make out what I was writing, I made it work. That was my way of communicating. I knew I couldn’t feel my legs, but at the time I didn’t know why. I was told by my surgeons that I would never walk again, but I still just didn’t know or understand much of anything. I stayed in ICU for the next 2 weeks and then I was transferred to the Shepherd Center, a top Rehabilitation center for brain and spinal cord injury patients. I spent my first 3 weeks at Shepherd in ICU as well and I also finally had my lung surgery during that time and was able to come off of the ventilator and breathing tubes. After I healed from the surgery, I was moved to a regular room and was able to begin very intense physical, occupational and recreational therapy. I spent a total of 7 ½ months at the Shepherd Center healing and learning to live again from a wheelchair and with only the use of my upper body. It was the absolute hardest thing I’ve ever gone through in my life, but I’m completely independent today because of them.
At 19, you don’t really think something like waking up and finding out you will be paralyzed for the rest of your life could happen to you, until it does and when it does, it seems to teach you a few things about life. It seems to give you a different perspective, a better perspective. At least it did for me. You learn who you are, what you’re made of. YOU LEARN YOUR PURPOSE. It’s been 4 years now since the accident and time seems to pass by faster with each year that goes by. January 31st is just another day for me now and Lilly is alive and well too. She is my best friend. The bond we share could never be broken. That boyfriend I had at the time, he’s now my husband. The most amazing husband I could ever ask for. Those family members, we’re all closer than ever before. I couldn’t be more thankful. And me- I’m a speaker and a social media influencer. I live life every single day from my wheelchair and with only the use of my upper body. I drive. I visit Shepherd often and give back to other patients who are in the same situation that I was in and I teach OT and PT students how to teach a future paralyzed patient of theirs to live life and get dressed from a wheelchair. I do everything that any able-bodied person would do on a daily basis, just in a different way. I’m still in physical therapy to this day, only 1 day a week, for my overall health and range of motion. I proved my surgeons wrong and I walked down the aisle at my wedding to my husband in my leg braces, all with the help of my physical therapist training me over the last 3 years, which turned out to be another difficult task for me to learn to do, but I think every girl dreams of walking down the aisle to her husband from the time she’s a child. It was something I had pictured in my head from the time I was a little girl and I didn’t want that picture to be played out differently just because of my accident. So I chased my dream. I conquered my goal and I hope by conquering my goal, I’m able to prove to every girl out there in my same situation or with any disability that they too, can still have that special moment on their big day if they put in the work and never give up on their dreams. I live trying to inspire others with my story, because I feel that’s my purpose. I feel God gave me my story for a reason and I should use it for the good, because there’s just something about growing through what you go through.
4 years ago, I never would’ve imagined I would be where I am today. The mountains, the valleys, the trials, the setbacks, the comebacks- there’s a certain beauty in all of them. They made me who I am. They tend to continually dig up the soil in me and let me see what I’m made of and there’s just something about that part where you find out who you are, when you find out why God gave you this specific battle. I think that’s the whole purpose of the journey- to find out who you are and what you’re made of. To find your why. To share God’s love. To shine light in darkness. To lean on him. To share how he’s made beauty out of ashes. I’ve learned he won’t protect you from every trial in life, but he will bless you with the strength, wisdom and grace to get through it. I’ve learned I wouldn’t still be here if there wasn’t more in store for me. I wouldn’t still be here if the journey was over. I’ve learned to keep my eyes fixed on the one who kept me breathing and keep my heart tied to the one who continually strengthens me to keep going. It doesn’t matter what you’ve done or what you’ve lost, in him you’ll find a reason to keep going that you won’t find anywhere else. Lilly and I celebrate our survival and the life that we still get to live day in and day out. I’m grateful for where we’re at and excited about where we’re going. My wish for everyone I come in contact with and everyone that comes across my story is that you never stop living your life to the fullest no matter what you may be going through. Always follow your heart and dreams and never give up!
Hello everyone and welcome to Reeve Connect. I think this is an amazing place to network, ask questions, get to know others and learn from them and maybe most importantly, this site provides a safe place with other people who know first hand what it is like to live with paralysis. My name is Joe and I was injured on October 2, 2010. I fell inside my home as a result of my type 1 diabetes. I had a severe hypoglycemic episode and somehow managed to fall from the third floor down to the second floor onto a hardwood floor. I cannot tell you how I did it because I have absolutely no memory of it. In fact, I don't remember anything until waking up in ICU at Harborview Regional Trauma Center in Seattle, WA. about a week later. I had been airlifted from my home in Port Angeles, WA. and had surgery with no memory of it at all. As a result of my fall, I suffered an incomplete injury at the T2 level leaving me paralyzed from my nipple line and down. I was 59 at the time and had spent a full life filled with sports, travel, hanging out with friends and most importantly, spending time with my wife and three children.
I have been married since June 21, 1973 and have two boys and one daughter aged, 41, 39 and 37 respectively. I had been lucky enough to retire at age 55 so I was enjoying a life of traveling, playing golf, riding my bike and doing yard work.
I do a good deal of service work. I find that gets me out of my head and I have always enjoyed helping others. I am a peer mentor with the Reeve Foundation as well as a Regional Champion which deals with Congress on legislation impacting the disabled community. I also serve on the boards of the Seattle Alliance for People with Disabilities and The Here and Now Project, which is a support group for people living with SCI and their family and caregivers.
For me, the adjustment to living life with paralysis was extremely difficult. I was 59 when I was injured and therefore had enjoyed a life filled with sports and activities. After first being injured I kept asking God why didn't I just die instead of being in this blankety-blank wheelchair. I felt my life was over and that there was nothing left to live for. Fortunately, after about 18 months, I started thinking differently. I started seeing my life in terms of what I still had instead of what I had lost. I looked around and there were countless blessings in my life. My wife, kids, family, friends were all still there and loved me just the same. That got me going. I have surfed, kayaked, swam, hand cycled and traveled. I am glad to be here with all of you and wish you all love and peace.
Hi! I'm the mom of a 23 year old son who was injured 9/10/17, so we are still very new to the SCI life and have soooo many questions about it all. He is a C7, T5/6 injury and is medically a quad. He has use of his arms, but limited use of his left hand (about 20%) and about 80% use of his right hand. He was extremely active pre-injury, and had gotten into weight lifting and hiking. He now does nothing but read and watch podcasts. I can't get him out of the house except for 3 days a week at the gym. He has basically quit living outside of the room we made for him by converting our carport. I am desperate for him to connect with others, and yet I know he has to want it himself. He wants to be independent, but doesn't really work at it (like I think he should). I didn't realize that this website could be a source of help for me so I'm excited about exploring the website and seeing all that it has to offer. The wonderful ladies of WAGS of SCI have been helpful, even though I'm a mom and not a wife or girlfriend
Hi! My 23 year old son was injured on January 15, and is still hospitalized. He is paralyzed from the waist down. I hope you are still frequenting the forums so that we can connect.
yolo fellow sci. I’m laura beck, one of the reeve connect moderators— i’m a C6 quadriplegic as of nov2016. my husband, two dogs and i were in a one car accident when we hit a puddle, rolled 3 times and hit a tree that crushed the roof of the car into my head. neither my husband or dogs had a scratch on them. before my injury i was an avid runner, yogi, painter, camper, hiker, dog trainer and i still am all those things now it just looks different (besides the running part). my husband jacob is my best friend and we do everything together. we laugh daily by crass humor and it keeps me going. my dogs are also my best friends and i can’t imagine life without them; except when the mailman is on our street. i’m really an open book, and love tossing ideas on creative ways to adapt to this life. if you have any questions feel free to message or tag me in a comment! i’ve been loving this forum and it’s been fun to talk to some of you about life as an sci. happy rollings!!
Hi my name is Dr. Dan Gottlieb. I have been a practicing psychologist for over 40 years. And I have been a C5-6 quadriplegic for nearly 40 of my 72 years.
For. 35 years I hosted a radio show on Philadelphia's NPR affiliate called "Voices in the Family". I've written five books and have held various positions over the years.
I now am in private practice and I teach meditation.
Hello hello all you lovely people. My name is Jewel, and I have a c4 spinal cord injury. Diagnosed quadriplegic. 10 years post injury, this year. Crazy to say that... But happy to still be alive.
I am a vintage antique, collector and seller. I also do art and a paper zine. I guess you can say I am of the creative persuasion. Pretty geeky if you ask me. But hey... Sometimes you gotta laugh to keep from crying. My favorite movie is Harold and Maude and my favorite food is cheesy fries. I'm just living and learning, on a daily basis as a quadriplegic female... As graciously as possible. Excited to connect with all of you. Cheers!
Hi my name is Ray Sellers I was shot 3 times February 9th 2016 From an act of violence in the streets of Oakland Ca. leaving me a c5 quadriplegic. Adapting was tough very tough. I feel in to a deep depression not wanting to do nothing not get out the bed not do therapy nothing. I couldn’t see no further then my condition. I was angry pushing away all the love and little help I did have around me away.
Working out has been a great avenue to help me with depression and stay motivated. Rugby has been another great avenue meeting others that’s fighting and over coming the same struggle made me a believer that life after SCI was possible and that I could be independent.
My goals are to help quads coming after me see that it is possible to live after sci and live a normal life.
Hi, everyone! I'm Brooke, a college student, and I have an older brother who sustained a C6-7 complete SCI in a freak accident shortly before I was born. I've only known my brother post-injury, and this has given me a unique perspective on what living with SCI means. I was immersed in the community at a young age (wheelchair basketball practices, adaptive sports camps, advocacy groups, etc.), and I've met some of the coolest people I know through it. I'm excited to learn more about the paralysis community from all of you. Cheers!
My name is Rob, and on July 6th 2016 I got into a car with a drunk driver. He tried to take a off ramp at over a 100 mph. We hit a wall between 78 to 88 mph. I was not wearing my seat belt and was DOA. I sevard my spinal cord at the T10, broke my neck, broke all my ribs but 1, right side was so crushed they needed to be plated as they kept collapsing my lung. My right lung was all ready collapsed from the wreck so I had chest tubs in both sides. I had several internal things wrong as well, facial fractures, broken nose, pulled my right arm out of socket and messed my elbow up so bad that my arm don't go straight. I only had a 5% chance of living. They was trying to keep me alive that some things was less important. But things got worse I was in a induced coma for the first two weeks and didn't breath on my own for over 3 weeks. But yea it got worse. I also had a trake. Something was going on with my throat they could not put a feeding tube down my throat it just kept going into my lungs. so I had to get a peg tube put in. I couldn't handle my of the feeds as they bloated me very bad so I went from 180 to 105 maybe 110. Then I moved my arms and fingers that made everyone happy. I ended up paralyzed from the chest down. Then I battled this troat issue as I had not ate food for over a year. They would stretch it out and it would close so I had to be on a soft diet plus the peg tube. After I think 30 or so going under 2 stents and some pig membrane it's better than it was. And out of no where I lost my voice. Im a sound engineer and DJ so I thought yelling is why but it wouldn't come back. Drs say it was some type of virus. Got my gal bladder out as it was impacted into my liver shortly after getting it out I got very sick ended up going back to the hospital as I was hitting a fever of 104.1 it was over 104 here I had a tear and it was all draining into my stomach. Now I went to Magee for rehab. I was stoked to be there as it's one of the best. I forgot to add this. But I took my meds via peg tube. But was having my first sleep over with some family and I had to take 1 little pill she smashed up put in a bite of apple sauce but I choked and all a sudden I woke up with another breathing tube in. I got it out but everyday they said I go back to rehab but next day I sat there. This went on for weeks before some people took charge and I got me moved to a rehab I wish I could of went to Magee but I came home and all my family would come out to see me more it was a great part of my rehabilitation. I was in the hospital more in the first year after being out because of very bad colds plus the bladder issue. I just don't know where I be with out my GF, and my two step girlies Sophia and Brooke Aundrea Andy. But it's hard it's. Only been two years but it feels like yesterday. I fight bad depression and night mares. The guy who was driving took his life the day before a Curt hearing. I just want out of this dark place. I feel like I have nothing to offer anyone. Words hurt. I close my self off. I talk to my self in my head. After I lost my voice I don't talk a lot as I have to use my lungs after five minutes I'm dead tired. I'm sorry for all the spelling mistakes hard to write through tears.
My name is Stacey; I'm 23 years old and I've been a C5 incomplete spinal cord injury for 12 years following a diving accident in 2007. I graduated from college last May and am planning on going to graduate school this fall for my Master's in Social Work. I want to become a counselor and help people suffering from depression, which I have been struggling with for about 4 years now. I have been doing physical therapy at the Kennedy Krieger Institute in Baltimore since my injury and I participate with BARS (Baltimore Adaptive Recreational Sports) Club. I love reading, music, movies, tv, and spending time with my friends and family. I am very excited to join this community and have a place to turn to with others living with paralysis. Don't hesitate to ask me any questions or even if you just want to chat about a good book or movie, I'm always game.
“The world is like that -- incomprehensible and full of surprises.” ― Jorge Amado
Project on a standing device for people with paralysis
Hello,
I am Gary, an engineering student working at the Irani Center for the Creation of Economic Wealth (I-CCEW) at the University of Oklahoma. This semester I am on a team working with Spinal Singularity, a health technology startup company focused on building devices for people with paralysis. We were tasked with building a device that will help people with paraplegia to stand.
We are currently in the prototyping phase of the project and will be needing your valuable insight over what this device should do. Your responses will be of great help to us and we will really appreciate it. If you are willing to help us make this project successful, please to reach out to any of these contacts below and we can schedule a 30-minute interview.
Comments
P.S. I am a open book!
Spotlight: Leo Pergson Posted by Reeve Staff in Daily Dose on June 11, 2018
# Health, Mobility
Leo Bubby Pergson can sum up his best advice for living with a spinal cord injury in three words – attitude is everything. Living with a spinal cord injury for 57 years, Pergson certainly knows a good deal about the topic.
“I was an active 17-year-old high school student in 1961 when a diving accident in the Kern River in Bakersfield, California, changed my life forever,” said Pergson who is from Willows, Ca. “The doctors gave my parents three days for me to live. The compression was from the C-2 through C-6 vertebrae with limited sensory and complete paralysis below my shoulders. I spent four months confined to spinal traction, lying flat on my back on Striker Frame and regained only very limited movement in my lower extremities.”
With access to only general practitioner medical care, Pergson’s injury, like many at the time, was deemed complete with no hope of recovery a year after his accident and he was transferred to hospice care. In 1963, he was moved to Casa Colina Rehab Center in Pomona for three years where he began his long road of therapy, eventually standing in parallel bars and then walking on crutches.
“Even after all these years, revisiting and reliving my personal SCI experience is never easy, but hopefully my last 57 years will inspire others to see what is possible,” said Pergson who is now 74 years old. “Whether complete or incomplete, every individual SCI injury is different. The journey to recovery is physical and mental but what makes the difference is long-term quality of care and quality of life. The key to survival is a ‘never give up’ attitude."
Over the years, Pergson went to college and worked in various jobs. He is quick to point out that the support of family and friends has made an enormous difference in his life starting with his mother’s never-ending love and belief in his recovery and continuing with his wife and daughter who doctors called a miracle baby.
“My family never gave up on hope and instilled in me a passion for living my life every day, in every moment,” said Pergson. “I take great joy in seeing my three grandchildren grow up and marry; I enjoy the smell and warmth of a family gathering around Thanksgiving table and listening to my friends bragging about their great everyday triumphs.”
Although there can be many long days and nights, Pergson believes that reconciling with and accepting moment by moment, day by day living is an important way to manage the fear of isolation and loss of independence that often comes with living with a spinal cord injury.
"Your quality and awareness in your everyday surroundings is your lifeline to your long-term SCI quality of life," said Pergson. “I like the idea of finding a new adventure every day, taking precious advantage of the life and times God gave me. I focus on being able to love, to cry, to never want to give in and using everything, every muscle in my broken paralyzed body that the Casa Colina Rehab Center was able to find.”
Pergson points out that our perception and definition of quality of life often changes over time. As a young person, we mostly focus on physical abilities, leisure activities and employment, but as we get older, we place more emphasis on the importance of family, love and social relationships.
“Quality of life for spinal cord injury survivors increases over time, particularly after the first year,” said Pergson. “The quality of life for anyone is not confined to the disability in our lives, but the ability to adjust and continue to find self-worth in living and searching for happiness. Just look at Stephen Hawking and what he was able to accomplish.”
As one can imagine, Pergson is also thankful for the advancements in medicine and technology available today. He uses the internet and Facebook regularly to connect to information and others living with a spinal cord injury. He often turns to the Reeve Foundation website as a valuable resource.
“One of the greatest strides over the years has been in the ability to live more comfortably,” said Pergson. “Improvements in pain management, wheelchair positioning and hygiene care have made an enormous difference as has the focus on SCI financial needs and adaptive technology which help me to enjoy life to its fullest potential.”
Although he is thrilled with these huge breakthroughs, Pergson strongly supports the need for additional funding to bring more awareness and advocacy in finding a permanent cure for spinal cord injuries.
“It’s like taking a rocket to the moon. Everyone thought it was impossible until we did it. A cure for paralysis is out there,” said Pergson. “Christopher Reeve lived almost 10 years after his spinal cord injury and spoke eloquently about moving forward. He viewed his time after his injury as a difficult, but ‘extraordinary journey’ and I couldn’t agree more.”
https://www.christopherreeve.org/blog/daily-dose/spotlight-leo-pergson
https://www.thebookpatch.com/BookStore/"in-the-beginning"/7a95e392-84bc-42f0-af0a-1d442bc35a83?isbn=9781633189201
After My Costs Per Copy/Shipping/All Remaining Proceeds will be Donated to Christopher Reeve Foundation for further SCI Spinal Cord Medial Research/
My name is Lauren Harmison. I am the CEO for Camp PossAbility, an adapted camp for young adults ages 18 to 35 with physical disabilities who have a typical high school diploma and use a wheelchair for mobility. We run for one week a summer in Martinsville, Indiana, just south of Indianapolis (for those who need to fly in--hint,hint!). Many of you would qualify, and our fastest growing group is our campers with SCIs.
My background is nursing and although I run the camp, I typically help with nursing skills (caths/bowel programs/skin checks) every night because I love doing nursing and helping empower others to be more independent with their care.
I have always had friends with disabilities; I would pretty much just introduce myself to people. I volunteered at an adapted camp in Missouri that I adored but realized that there was not a good adapted camp for adults who had high cognitive function, so I created one! The Reeve Foundation has sponsored our camp week twice. We have an amazing week of camp every year, and I run the camp as a volunteer.
We are also getting ready to add a skills training weekend for those who had limited therapy or want to work on skills in a small group (stay tuned for that or message me if you're interested!)
I love getting to meet people and be able to provide support and resources, so I have been known to email people or their families after their SCIs to give them support, a friend, and a resource. People appreciate that I am an RN so they can discuss bowel programs, catheters, etc. with me and can vent if needed, but they also know I will encourage them to seek resources and try new things. So I am always happy to talk and be a resource!
I'm so excited that the Reeve Foundation started this resource, and I hope many are able to benefit from it.
Attached is a picture of me at Camp PossAbility with one of my friends who inspired me to start Camp PossAbility! Definitely check it out and come play with us! www.camppossability.org
At 19, you don’t really think something like waking up and finding out you will be paralyzed for the rest of your life could happen to you, until it does and when it does, it seems to teach you a few things about life. It seems to give you a different perspective, a better perspective. At least it did for me. You learn who you are, what you’re made of. YOU LEARN YOUR PURPOSE. It’s been 4 years now since the accident and time seems to pass by faster with each year that goes by. January 31st is just another day for me now and Lilly is alive and well too. She is my best friend. The bond we share could never be broken. That boyfriend I had at the time, he’s now my husband. The most amazing husband I could ever ask for. Those family members, we’re all closer than ever before. I couldn’t be more thankful. And me- I’m a speaker and a social media influencer. I live life every single day from my wheelchair and with only the use of my upper body. I drive. I visit Shepherd often and give back to other patients who are in the same situation that I was in and I teach OT and PT students how to teach a future paralyzed patient of theirs to live life and get dressed from a wheelchair. I do everything that any able-bodied person would do on a daily basis, just in a different way. I’m still in physical therapy to this day, only 1 day a week, for my overall health and range of motion. I proved my surgeons wrong and I walked down the aisle at my wedding to my husband in my leg braces, all with the help of my physical therapist training me over the last 3 years, which turned out to be another difficult task for me to learn to do, but I think every girl dreams of walking down the aisle to her husband from the time she’s a child. It was something I had pictured in my head from the time I was a little girl and I didn’t want that picture to be played out differently just because of my accident. So I chased my dream. I conquered my goal and I hope by conquering my goal, I’m able to prove to every girl out there in my same situation or with any disability that they too, can still have that special moment on their big day if they put in the work and never give up on their dreams. I live trying to inspire others with my story, because I feel that’s my purpose. I feel God gave me my story for a reason and I should use it for the good, because there’s just something about growing through what you go through.
4 years ago, I never would’ve imagined I would be where I am today. The mountains, the valleys, the trials, the setbacks, the comebacks- there’s a certain beauty in all of them. They made me who I am. They tend to continually dig up the soil in me and let me see what I’m made of and there’s just something about that part where you find out who you are, when you find out why God gave you this specific battle. I think that’s the whole purpose of the journey- to find out who you are and what you’re made of. To find your why. To share God’s love. To shine light in darkness. To lean on him. To share how he’s made beauty out of ashes. I’ve learned he won’t protect you from every trial in life, but he will bless you with the strength, wisdom and grace to get through it. I’ve learned I wouldn’t still be here if there wasn’t more in store for me. I wouldn’t still be here if the journey was over. I’ve learned to keep my eyes fixed on the one who kept me breathing and keep my heart tied to the one who continually strengthens me to keep going. It doesn’t matter what you’ve done or what you’ve lost, in him you’ll find a reason to keep going that you won’t find anywhere else. Lilly and I celebrate our survival and the life that we still get to live day in and day out. I’m grateful for where we’re at and excited about where we’re going. My wish for everyone I come in contact with and everyone that comes across my story is that you never stop living your life to the fullest no matter what you may be going through. Always follow your heart and dreams and never give up!
I have been married since June 21, 1973 and have two boys and one daughter aged, 41, 39 and 37 respectively. I had been lucky enough to retire at age 55 so I was enjoying a life of traveling, playing golf, riding my bike and doing yard work.
I do a good deal of service work. I find that gets me out of my head and I have always enjoyed helping others. I am a peer mentor with the Reeve Foundation as well as a Regional Champion which deals with Congress on legislation impacting the disabled community. I also serve on the boards of the Seattle Alliance for People with Disabilities and The Here and Now Project, which is a support group for people living with SCI and their family and caregivers.
For me, the adjustment to living life with paralysis was extremely difficult. I was 59 when I was injured and therefore had enjoyed a life filled with sports and activities. After first being injured I kept asking God why didn't I just die instead of being in this blankety-blank wheelchair. I felt my life was over and that there was nothing left to live for.
Fortunately, after about 18 months, I started thinking differently. I started seeing my life in terms of what I still had instead of what I had lost. I looked around and there were countless blessings in my life. My wife, kids, family, friends were all still there and loved me just the same. That got me going. I have surfed, kayaked, swam, hand cycled and traveled. I am glad to be here with all of you and wish you all love and peace.
before my injury i was an avid runner, yogi, painter, camper, hiker, dog trainer and i still am all those things now it just looks different (besides the running part).
my husband jacob is my best friend and we do everything together. we laugh daily by crass humor and it keeps me going. my dogs are also my best friends and i can’t imagine life without them; except when the mailman is on our street. i’m really an open book, and love tossing ideas on creative ways to adapt to this life.
if you have any questions feel free to message or tag me in a comment! i’ve been loving this forum and it’s been fun to talk to some of you about life as an sci. happy rollings!!
Excited to connect with all of you.
Cheers!
Hi my name is Ray Sellers I was shot 3 times February 9th 2016 From an act of violence in the streets of Oakland Ca. leaving me a c5 quadriplegic. Adapting was tough very tough. I feel in to a deep depression not wanting to do nothing not get out the bed not do therapy nothing. I couldn’t see no further then my condition. I was angry pushing away all the love and little help I did have around me away.
Working out has been a great avenue to help me with depression and stay motivated. Rugby has been another great avenue meeting others that’s fighting and over coming the same struggle made me a believer that life after SCI was possible and that I could be independent.
My goals are to help quads coming after me see that it is possible to live after sci and live a normal life.
Stay Motivated!!!!
My name is Rob, and on July 6th 2016 I got into a car with a drunk driver. He tried to take a off ramp at over a 100 mph. We hit a wall between 78 to 88 mph. I was not wearing my seat belt and was DOA. I sevard my spinal cord at the T10, broke my neck, broke all my ribs but 1, right side was so crushed they needed to be plated as they kept collapsing my lung. My right lung was all ready collapsed from the wreck so I had chest tubs in both sides. I had several internal things wrong as well, facial fractures, broken nose, pulled my right arm out of socket and messed my elbow up so bad that my arm don't go straight. I only had a 5% chance of living. They was trying to keep me alive that some things was less important. But things got worse I was in a induced coma for the first two weeks and didn't breath on my own for over 3 weeks. But yea it got worse. I also had a trake. Something was going on with my throat they could not put a feeding tube down my throat it just kept going into my lungs. so I had to get a peg tube put in. I couldn't handle my of the feeds as they bloated me very bad so I went from 180 to 105 maybe 110. Then I moved my arms and fingers that made everyone happy. I ended up paralyzed from the chest down. Then I battled this troat issue as I had not ate food for over a year. They would stretch it out and it would close so I had to be on a soft diet plus the peg tube. After I think 30 or so going under 2 stents and some pig membrane it's better than it was. And out of no where I lost my voice. Im a sound engineer and DJ so I thought yelling is why but it wouldn't come back. Drs say it was some type of virus. Got my gal bladder out as it was impacted into my liver shortly after getting it out I got very sick ended up going back to the hospital as I was hitting a fever of 104.1 it was over 104 here I had a tear and it was all draining into my stomach. Now I went to Magee for rehab. I was stoked to be there as it's one of the best. I forgot to add this. But I took my meds via peg tube. But was having my first sleep over with some family and I had to take 1 little pill she smashed up put in a bite of apple sauce but I choked and all a sudden I woke up with another breathing tube in. I got it out but everyday they said I go back to rehab but next day I sat there. This went on for weeks before some people took charge and I got me moved to a rehab I wish I could of went to Magee but I came home and all my family would come out to see me more it was a great part of my rehabilitation. I was in the hospital more in the first year after being out because of very bad colds plus the bladder issue. I just don't know where I be with out my GF, and my two step girlies Sophia and Brooke Aundrea Andy. But it's hard it's. Only been two years but it feels like yesterday. I fight bad depression and night mares. The guy who was driving took his life the day before a Curt hearing. I just want out of this dark place. I feel like I have nothing to offer anyone. Words hurt. I close my self off. I talk to my self in my head. After I lost my voice I don't talk a lot as I have to use my lungs after five minutes I'm dead tired. I'm sorry for all the spelling mistakes hard to write through tears.
My name is Stacey; I'm 23 years old and I've been a C5 incomplete spinal cord injury for 12 years following a diving accident in 2007. I graduated from college last May and am planning on going to graduate school this fall for my Master's in Social Work. I want to become a counselor and help people suffering from depression, which I have been struggling with for about 4 years now. I have been doing physical therapy at the Kennedy Krieger Institute in Baltimore since my injury and I participate with BARS (Baltimore Adaptive Recreational Sports) Club. I love reading, music, movies, tv, and spending time with my friends and family. I am very excited to join this community and have a place to turn to with others living with paralysis. Don't hesitate to ask me any questions or even if you just want to chat about a good book or movie, I'm always game.
“The world is like that -- incomprehensible and full of surprises.” ― Jorge Amado
Hello,
I am Gary, an engineering student working at the Irani Center for the Creation of Economic Wealth (I-CCEW) at the University of Oklahoma. This semester I am on a team working with Spinal Singularity, a health technology startup company focused on building devices for people with paralysis. We were tasked with building a device that will help people with paraplegia to stand.
We are currently in the prototyping phase of the project and will be needing your valuable insight over what this device should do. Your responses will be of great help to us and we will really appreciate it. If you are willing to help us make this project successful, please to reach out to any of these contacts below and we can schedule a 30-minute interview.
Gary Sefah: [email protected] / 5053101855
Thank you for your time.