Challenging Health Issues for Adults with Cerebral Palsy
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- čas přidán 1. 07. 2024
- (Visit: www.uctv.tv/) Henry G. Chambers, MD. Professor of Clinical Orthopedic Surgery, UCSD
Director of Cerebral Palsy Program, Rady Children's Hospital. UC San Diego. Recorded on 03/09/2018. Series: "Developmental Disabilities Update" [Professional Medical Education] [Show ID: 33520]
I was born with CP. I went from deploying as a contractor to Afghanistan Iraq and Qatar in my 30's with mild CP. To excruciating chronic pain and weight gain by 45. This is no Joke. Doctors want to diagnose every problem and pain as CP related. I started declining when the apartment had a saver black mold infestation. Overnight I went from what was my normal. To falling 3 times a week on the way to work. There were even days I was furniture walking to keep my balance. I even had physical and visual hallucinations of bugs and lice infestation. To this day I have chronic pain and inflammation. I keep a recumbent bike, an elliptical trainer a starch machine , a 60-up balance trainer and recently got a treadmill for what I call "the little gym" in my home. I moved to a dyer climate to get away from the mold and got a job where I can work from home. I work in IT. I figured out that the full body vibration machine really really really helps. So did getting away from the black mold. I am Leary of walking in public. I brace myself against vehicles or reach for objects when climbing curbs. I use curb cuts and ramps . I climb and descend stairs slowly. Holding on to railings. Most of it is fear. I would fall 2-3 times a week going to work in Washington DC. And I did not know what was making me worse. I will say. I figured out the music benefits by the time I was 9 years old. Music also helps calm all the spasticity and thus the pain associated with muscle tightness.. An also pretty sure I have a lot of undiagnosed micro fractures from falling and an undiagnosed hernia. Last time I went to the ER after an Ice-cream freezer bowl dropped on my "good foot" . I was given x-rays and told it was not broken and accused of doctor shopping for pain killers. 5 yeas later the bones where the ice-cream freezer bowl bowl fell from the top freezer of the refrigerator. The bones are crooked and the toe nails do not grow right. That has been the kind of care I have gotten all of my adult life. The doctors are not only dismissive. They are hostilely accusatory with pain management. Keep in mind I have made 6 figures and have some of the best medical insurance in the United States. Because of my chosen profession. Doing any kind of unnecessary medication prescribed or not would interfere with my job. I have known that for more than a decarded. I refuse to ask Doctors for help at this point. I make Arnica tinctures and tea baths for Pain Management and listen to music to keep my muscles looser during the day, Once a month I spend a Saturday sleeping for 24 hours or longer to fight fatigue. And just call it a "CP Day" so people don't bother me about it. Friends and family act like I am crazy and just treat me like I am lazy and fat because I workout less. Relatives fat shaming and laughing about my growing struggles. Where there used to not be makes is worse. I cut them out of my life too. My advice to Adults with CP. Check your physical environment for Black mod and Toxic Mold, Toxic People, and Toxic Healthcare Provides . Build yourself a "Little Gym". Get a good chiropractor, and schedule a weekend or two each month to sleep the clock around. Make Arnica tea baths. Take Arnica Flowers and put a hand full in a knee high sock to the sock to the bath spigot and run the bath water to fill the bathtub over the Arnica Flowers. That will numb and loosen the muscle es without drugs. It has been my experience, the reason there is not enough research on Adults with CP. The medical community is either hostile, dejected or both. Towards adults with CP. The best thing you can do for yourself is help yourself. And check and remove the things and people that are toxic to you. And turn up the Music on a daily basis.
I am a 60 year old woman who has cerebral palsy and I am so glad to know that your out there. I feel I have been treated very poorly medically throughout my life and some social workers are very misinformed about cerebral palsy which causes rudeness . I could go on and on but I just want to say thank you for your work
I liked tou comment but I do not like it lol
. I just know what u are saying
. Stay strong 💪
I have "mild CP." I live independently. I bought a book about the history of disability. It's probably outdated but it may be a good reference for medical practitioners
Yes we folks with CP are out here. Glad we are being recognized as existing and appreciate this work.. at 61 I am going through major changes physical changes that are impacting my mobility and ability to walk independently.
I'm 50 years old and I'm having trouble with mobility due to cp and arthritis, and I'm also having issues with acid reflux and constipation. It drives me crazy that care for adults with cp is hard to find. I'm glad that I'm not the only one who is having this issue.
Valerieann Rumpf snap, the issues you are having to deal with are almost identical to my own, when I was younger I was always under the impression that my condition would remain stable and stay the same, as I’ve aged this has not been the case, back in the 70s and 80s no one was talking about cerebral palsy with regards to ageing. I have found general practitioners have a lack of knowledge in this area, it is still centred around paediatrics here in the UK.
@@louisemartin6820 it's the same in the USA too.
I have spastic hemiplegia cerebral palsy ever since I was born. I was born prematurely at 33 weeks with a grade 4 intra-ventricular brain hemorrhage and hydrocephalus. Doctors still don’t understand why I had the brain injury and managed to only develop a milder form of cerebral palsy. I was diagnosed with ADHD in my late high school years alongside anxiety and dysthymia. Physically, I’ve had kneecap issues with my left kneecap and had a major surgery performed on my left knee 4 years ago after I had switched from a pediatric orthopedic surgeon to an orthopedic surgeon who specializes in adults. The issue of my kneecap was that I had torn the ligament that holds the kneecap in place and, I also had patella alta, and a quadriceps angle discrepancy. All of these things were fixed when I had the surgery 4 years ago.
People (especially those in the medical community) need to get educated about the fact that cerebral palsy is a lifelong condition that doesn’t only impact childhood, but adulthood as well.
I’m 32 with cerebral palsy and I’m relieved to know that there are people who care.. thank you
Thank you for this for explaining and addressing my concerns for cp health
I was born with cerebral palsy and scoliosis. I turned 52 in June. Thank you for what you do. At least someone is putting an effort looking out for people like us. I babysat and cleaned houses prior to getting a regular job at 16. I then worked for another 33 years after that and have raised my son from birth on my own. There aren't even words to express the difficulty physically and the pain. I can recall times being in a fetal position on the ground just crying because I didn't feel like I could move any further due to the pain. I've also had breast cancer twice. The second time being after a radical bilateral mastectomy. Go figure. Then I also suffered a C4 through C6 compression fracture, a bowed spine, and ripped out back muscles in addition to knocked out front tooth from a car accident. It's difficult to find those who are familiar with patients having CP in addition to other issues.
I turned 50. I had to retire . I have CP on left side. I have constant pain and other issues because of cp
I have some advice for adults with cp. Get involved in your nearest independent living organization, religious, or community/social group that you are interested in even if it's only virtually, you'll meet new people that way.
Thank you Dr. Chambers, for caring about adults with CP. I wanted to understand the life span & I'm sharing this video with family, in hopes they will gain more clarity and understanding about the challenges I face. It's definitely progressive! I had active years as a teenager & at 25/26yrs old, it was like my body started failing and developing worsening pain & more limitations. I'm tired of fighting for my health alone. I hope I can beat 60... Yeah I'm on Medicaid & no doctor wants profit losses for their office. It's been a nightmare. PLEASE KEEP UP THE RESEARCH & VIDEOS
Thank you for this ..
I'm a 41 year old woman with mild Cerebral Palsy and I have gone to walking on my own in my twenties and 30's to a walker I have a lot more pain but none of the other conditions that are mentioned by the grace of god I live independently and I do work! I've been very fortunate to have good medical care right now but I do notice curtain thing's are changing and being taken away for individuals with disabilities in my home town I deal with an agency called MRDD that supposed to help out people with disabilities and they've taken away a lot of programs that would be of great help to people with disabilities 😞 and it's sad it's almost like they don't care what happens to us.
This is the only video I can relate to. Mild CP until it slowly crept up in my 30s
Went from being active, involved in alot of things to now almost 50 and can barely walk. The chronic pain, fatigue. I had to leave work, got to the point just doing simple tasks were too hard and heavy. Strength levels and or anything is hard. Gosh and the falls!! I knew as a kid what would happen but not to this extent. Its a whole new ballgame of pain, not being heard and not being understood. Tired of hearing 'exercise' ummm thats the problem. I hope all you CP warriors are coping and finding ways to cope.
I am 42, with quadriplegic ataxic CP with spasticity. I have full disc degeneration in my c5-c7 cervicle spine as well as in my lower lumbar spine. I’m allergic to weed and it’s byproducts. I am in chronic pain and have had a loss of mobility and even further loss of control of my right arm and hand. I have also become overweight and have seen multiple doctors all of which who are well meaning but none of which who had any idea how to help me. I’m with my current doctor who is trying to help me to the best of their ability but they are overworked so any meaningful progress is glacially slow. But at least it’s moving. I have had doctors who basically asked me to find other care because they had no idea how to help me. So thank you for spreading awareness of this issue. At this point though I think we’re going to get better help by advancing AI technology in the medical field because through out the course of history people would rather ignore the disabled than make actual changes to the system.
I lived in Utah . I don't have Cerebral Palsy but I legally blind. I lived SLC area for 5 years most of which I worked a good majority of the time . And, their paratransit system would allow me to schedule repeated trips so I wouldn't have to call everyday. I was also going to my last two years of high school and there years after that.
Also, the plans in the Vocational Rehabilitation work called Individual Plans of Employment.
Cannabis has kept me alive and you can never doubt that. I gotta say
I jus found ur CZcams thanks.. you see..wait let me back up.. I have CP on my left side and since birth. Dealing with let types of health issues. When I was your.. there are so many awesome and great resources. Then about 20 it stops.. I recently got a general physician as my doc.. knows nothing about it or has no throughts in recemeding me to a CP specialist.. I have it on my whole left side only.. now in my 50s the right side is feeling everything.. hurts so bad..constantly.. I am thinking about making a CZcams video myself
I qm full time 24 hour 7 day a week care giver .. I was operations on a 1990's basis of cat for him on a way
. I just learn things I wish I knew 4 Yeats ago.. crying but greatful ..soo hatd to find accurate information.. thank you
I have cp. spastic. I’m smart but no genius. I’m 28 ssi sucks and won’t let me back on. I need help. How to be an adult and find a job. I’m in a lot of pain but I feel like there’s no hope. Any advice is great. Thanks. Good luck to those with it or anyone with a disability
I also have bi polar or depression issues. I need advice and er. Primary care, neurologist, podiatrist, and physical therapy and nothing no help it’s killing me
Why cerebral palsy is considered a developmental disability? How come they are different from other physical disability like muscular dystrophy and Spina bifida?
?
I have had spasticity all my life and was subjected to physical abuse as a child I am wondering could physical abuse caused CP as a baby.
If yes, what can I do now am going on 50 years old.
I also worked with my extended family on charging my parents with additional child abuse of their nephews and niece my biological parents and only one is in prison.
I would like to see myself. If I could change both of my biological for pain and suffering because they caused my CP.
Sincerely!
R.S.V.
I have cerebral palsy
What do you do where do you go who do you ask for help. Are they helping. 28 with cp. moms gone dads getting old I need help someone who has advice I’ll take it. I live in mass. I can’t get on ssi because they don’t care at all. Doctors don’t care. Almost none know anything about cp. I seem normal if I’m sitting talking but walking, moving you will notice it right away. I need help and I’m not getting none. I’m ready to be done with this. It’s getting worse and insurance sucks. I’m not trying to be a whiner but I need to know how to transition between a kid who had parents friends etc to a lose of all that with no understanding of cp. my foot feels like it needs to be chopped off. I gained 55 pounds. I’m sick of all of it. Where do I go to find friendship or anything. Work. Anything. Advice appreciated
Not much better in Canada
Yes definitely not better in Canada
If human beings lives are only looked at as money then we all loose. What’s the point in trying at that moment?
Do cerabral palsy cause mental illness and paranoid schizophrenia. There some I met that are not to bright. Leak in the attic if you know what I mean. No disrespect on the subject. But is it possible for a person with curable palsy to also be off there rocker. Mentally ?
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It's possible just like it's possible for an able bodied person to have mental illnesses, plus the stress of living with a disability and discrimination may increase the likelihood of developing mental illness, but it doesn't itself cause mental illnesses to my knowledge.