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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.