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As you probably could tell, I am by no means a medical professional, but I love to learn about medical research. I was wondering has there been any thoughts given to extracting the dead cells of the cerebrum or where the dead cells have occurred and replacing with new stem cells? I guess you know I'm talking about any variation of stem cell procedure or doesn't CP work and respond like spinal cord damage?

I always wondered why cerebral palsy doesn't receive much attention and research, especially in the adult years. It seems to me that I have always heard about CP talked about as a an early childhood disease. I have so many questions and I would be very willing to assist in aspects of this research alliance. Does anybody feel that CP has become an orphaned condition?

I have CP. In my early twenties I went to an immediate care because I did not have a PCP at the time (I'd only recently come out of the adolescent healthcare / insurance system)..I was fairly healthy, moderately active through community sport, but I started to feel the cumulative effects of spasticity in my neck and shoulders. This one particular visit was caused by underlying chronic pain but made urgent coupled by a recurrance of severe acute pain that limited range of motion in my neck, to the point where I couldn't sit up or turn my head without assistance and I was met by two confounding reactions: "You may have slept wrong" and "your blood pressure is high, your HR is elevated, your BMI indicates that you are slightly overweight, do you have any underlying conditions?" I looked this physician's assistant in the face, not sure if they were situationally unaware or if they didn't believe I was at the level of pain I had reported, and said, "if you were experiencing some combination of chronic and acute pain, do you think your blood pressure would be elevated?" To which they responded "so hypertension is not normal for you?" to which I wanted to shout, but simply replied "no." Since then, I've never had much success through the healthcare system of addressing chronic pain with management strategies and as a result, my otherwise normal blood pressure of 90 to 110/ 60 to 70 in my 20s has increased in the presence of stress, pain, and poor sleep to hover at 130 to 145 / 70-80 in my 30s, despite the fact that my diet, physical activity, cholesterol, etc. is well maintained. It's one of the things that annoys me the most about aging, CP, and care considerations.

Are there pathways to advocate for and connect quantified dystonia diagnostic tools from clinics and studies to adaptive sports classification criteria (points given to assess levels a function / deficit in order to promote fairplay across sport involving various physical disability)? Sport-specific criteria for stressful /concentration scenarios and the impact that dystonia and dyskinetic coordination in the spectrum of CP, is largely absent or ill-quantified in my sport. Other physical factors regarding spasticity like assymetric strength, imbalances, or ROM impairment are quantified, but dystonia is measured in largely subjective qualifiers and I would like to know if there are particular researchers with the knowledge to be able to impact future metric iterations of sport classification.

I'm dating someone and they've got concerns about my CP getting worse as I get older. Is there anything I can have them ready or watch to help possibly ease their minds and hopefully answer some of their questions.

I'm not surprised it is hard to find rural investigators. Most of my rural doctors say I'm their only pt with CP and are unwilling to ask others about my concerns. I switched to CP doctors in the city.

Thank you so much great information

Im doing research in AI and CP.Can I get the connect

Its easy, just cure Cerebral palsy of all types, instant life improvement, surprise surprise.

Very informative. Exercise seems to be very important. Not just for CPers, but for everyone.

Has anyone investigated the effects of Spinal Cord Stimulation? I am in the process of recovering from getting it installed. It seems to help but can’t confirm yet.

Thank you paul, and all of you I found this video very helpful

There’s a lot of good information in here, but the second doctor to speak the mail. He did a lot of um, and that was kind of distracting.

Is the group free of charge to join up please

I am 18

Is it free to join

I have cp and scoliosis witch over time have got worse and it’s causing me to wet myself uncontrollably now any one got the same symptoms

I would love a new body this one has expired 😂

How do I join your cp group please

@CPRN. Has there been researched for neurogenic bladder in Adult with CP?

super insightful panel, it's always great to see research for adults with CP. I only wish there was more time for the q&a portion so it wasnt interrupted. adults w CP don't often get the floor🥲

Will you include people with speech and language disorders and AAC?

Better education for providers when it comes to adults with CP.

As an adult with CP eating well, proper sleep, and PT with the right team and the right medical team is extremely important.

I would like to be in the focus group.

I'm a pediatric Clinical Dietitian along with a mom of GMFCS 1 kiddo. He is 5 years old and quite thin although high muscle mass who never stops moving and rarely complains of fatigue (outside of long walks which I think is more related to attention span). Curious to see though many with fatigue, clinically I work with more GMFCS V individuals.

Is there a slide deck available for download?

I am so old with CP they didn't even do an MRI when I was younger. I am 54 and still very independent.

Early detection is crucial and yes it is lifelong. Love what the guys are achieving in their research.

I know this video is older but... I'm a GMFCS III diplegic, and new pump patient. I'm also an epidemiologist. It took me a decade of research and decreasing functioning before the pro/con balance tipped towards ITB therapy for me. No regrets so far, but I'm relieved to hear infection in ITB CPers is a priority for CPRN.Watching this, I feel a bit vidicated and less like a pest for all the infection protocol questions I asked my surgeon.

Hi, great webinar. When will the results be ready from the study???

This has been an excellent webinar. Thank you Julie and Mary. I would love to talk with both of you with regard to this study. I apologize for missing the live webinar. I am 53 with spastic CP. PT and dry needling work for me.

This was my first time but I missed the live broadcast in my email.

I never had any leg surgery just therapy I don’t understand pain until was in my 65 in my knees.i do a lot therapy.

I’d exercise 3 times a day

And accuppunture helps

I’m at level 1 name is Sandra lowery my mild cerebral palsy was caused 2 strokes the day after birth I survived with mild cerebral palsy because of therapy done at 6 weeks old yes that early.

No haven’t Been on this site before I have mild cerebral palsy very mild cerebral palsy I been walking since 20 months old unassisted and still walk at 68 years old.

I am 55 with CP...what is this community doing to help and reach out to the aging CP population? Thanks

Dr. Leonard comments at 50 min 40 sec that every patient that has SDR in Saint Louis has Achilles lengthening surgery. The comment is untrue. In our patients followed for 20-28 years after SDR, 21% had Achilles tendon lengthening. We published our data.

user-il5jc7bd9e I commend you are taking on this difficult research topic. A comparative study of CP treatments is welcome. Our St.Louis group had NIH grant to study SDR vs Baclofen pump. It was impossible to recruit patients for the study. Mr. Grsoss - would you list the 9 research publications for the public?

My name is George Villacorta. I am a patient with a back to finish pump in. I’m looking for someone to help me and advise me if the pump supposed to be wobbly moving around everywhere once it’s been implanted into my body because I believe this is my practice that was performed on me need help

I live in La Mesa California and I am having difficulty finding a orthopedic 5:47 surgeon for my son who is 44 years old with hip dysplasia. He is in a lot of pain with movement. He does not walk Do you have a program here in San Diego California? If so, do you know of any doctors that treat CP in adults? My son has been dealing with this pain for several months. He does not talk but I know when he is in pain Thank you

So there isn’t any treatment for adults over 40 y/o

Hello, I have a son with cerebral palsy. How can I join?

I am 26-year old woman with CP( I have a healthy twin,premature birth)I want to start trying to have a baby but I am scared to pass a genetic mutation that would caused CP. Do you reccomend genetic testing? Please help I dont know how to proceed

I love these webinars and I’m very excited to see the growth, especially in the number of participating healthcare facilities.

😉 *Promosm*

I was blown away to see other CP with sensory issues. I've always been the oddball on that, or so I thought, but when I saw the live results of the survey/study I saw that it was normal for CP. When I talked about it with friends I think they recognized issues with proprioception in particular and didn't necessarily see that as sensory until then. I'm so happy you guys did this study! I felt seen. I've struggled with hypersensitivity my whole life and still have some issues with it now. I'm 34/F and have GMFCS level 2 and spastic quadriparesis.

I am grateful both of your organizations exist. Thanks, Jocelyn for weaving in the perspective of someone with lived-experience while also moderating. I appreciate it.