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The unwarranted hype around stem cells
Clinics claim that expensive stem cell therapies can help patients with dementia, autism, multiple sclerosis and even cerebral palsy - and crowdfunding campaigns to pay for the treatments are increasingly common. But are the patients and the donors being misled about the benefits and the risks? Read the complete BBC…
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CP Research with the University of Leeds and Durham
I am writing to invite you to participate in a research study entitled: “Minding the gaps: the role of community co-creation in improving medical and social care for adolescents and young adults with cerebral palsy” developed by the Faculty of Medicine & Health, the Business School of University of Leeds, and University of…
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Happy to answer any questions that parents have
I'm new to the group today. I have a son with cerebral pausey. 39 years of age . Who is quite poorly in hospital at the moment. I am happy to answer any questions that parents have. As I have a mothers experiences , if a disabled son of the age he is. Who is the most kindness and living person I know
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New here and feeling scared!
Hi all- my son is nearly 6 months and hasn’t had a diagnosis yet but I’m scared it might be coming. I feel everything is being dismissed though because of his age. Wondering if you could maybe give me some input. my little boy was born 10 weeks early and was found to have a very subtle amount of pvl on an ultrasound scan.…
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Mild HIE and cerebral palsy
My son( 2 months old) was diagnosed with mild HIE( Hypoxic Ischemic Encephalopathy) at birth. I know it's a real young age to be worried about CP, but he had a rough birth( C-section, 16 pop offs. 4 docs had to push him out). Initial Apgar of 3 and needed bagged. Cord Blood PH 6.9. The only test ordered was a cranial…
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Assessment for direct payment
I live on my own and social services say I do not meet the needs for direct payment. As I can get out of bed and make a drink. I have cerebral palsy and need help around the home and cut up food. My mother passed away so I do not have support. Social Services don't use Face Assessment form. I would like feedback if anyone…
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Dealing with chronic migraine, chronic sinus and cluster headaches - employment/mental health.
Hello, I'm Hannah, 26 years old and have suffered from migraines for over 16 years. I would really appreciate some guidance on how to cope with chronic migraines, chronic sinus and cluster headache, please. Whether you are someone who has experienced these debilitating pains and can give me some advice on how you've been…
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pain from Fibro
hello I am new here. I am struggling with pain from fiibromyalgia. Nothing seems to work including the drugs my gp has given me. I am have severe anxiety. how do others cope? Do you find that a lot of people don't understand. I feel that my friends are getting fed up of me which is isolating me. I have tried telling them…
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Help with speech and language
Hi Folks I have a 4 year old son who has had cerebal palsy since birth . He was born at 24 weeks and suffered a major bleed on the brain. He has very limited speech and salt have now introduced an app for us to try for communication. They have only given us limited information and told us to teach him this. My son does not…
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New to this comn7nity
Hello every one I'm Catherine i am new to the community and wanted to say hello.
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Access to social worker and additional support
Hi all, I'm looking for more information on how to get access to a social worker and mental health carer to help me a few days a week with basic day to day tasks. I'm 29 yo with hemiplegia, a type of cerebral palsy and feel the need for more support in my life. Thanks
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Peterborough Cerebral Palsy
Need help to admit my 3 years 2 months son [removed by moderator] diagnosed with Cerebral Palsy in special school in Peterborough . I stay in [removed by moderator]. My Number : [removed by moderator]
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Tramadol
Hey i am a mum of 3 and work with special needs early years children. The last 6 month my health has gone down hill and i am feeling very low and tried all the time. When i am not working i just want to sleep which not fair on my family. Could tramadol be a reason to make my health worst or could it be the way my cp could…
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I get so irritated!
So, I'm currently lay in bed thinking about my daughter. She has CP and I've come to terms with it and I'm dealing with it all as best I can. But... Her dad is irritating me. He won't accept she has CP. Says she's fine, there's nothing wrong and that I'm just being stupid. Clearly there is something wrong because she's…
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Can you have CP and not know and can it be diagnosed in your 30s?
Hi I'm new here and looking for some advice after reading a lot about Hypertonia and Rigid muscles. Ever since I was a teenager I have struggled with tight muscles and short muscles the physio at the time said it was like my muscles had stopped growing at about the age of 13/14. I had lots of Physio, stretching and got…
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National Neurology Patient Survey 2018/19 Results
I am pleased to share the report of the 2018/19 National Neurology Patient Experience Survey, which The Neurological Alliance has launched today. The report is called Neuro Patience; a title chosen with intended irony given the results show that the experience of people with neurological conditions remains poor. The main…
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Cerebral Palsy and Premature ageing
I'm 43 and started with pains in my legs around three years ago. My left leg became painful and has kept giving way and the first time I actually fell down, the second I broke my fall so didn't actually fell. The cerebral palsy affected my right side, so my GP said my left side was wearing out due to overcompensating for…
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Interventions in Childhood May Improve Adult Bone Health
Adolescents with cerebral palsy have low bone mass, which significantly improves and is maintained during early adulthood, Australian researchers have found. This suggests that cerebral palsy patients may benefit from early interventions to prevent bone mass loss, or improve bone metabolism, to optimize bone health from…
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When I get a virus I seemed to take a long time to recover is this common with people with CP
For the past three week I had headaches and feeling sick. I now getting lots of aches and tightness in the throat. GP said virus take time to leave us. Has anyone with CP have problems.
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Travel
Hi everyone, I am a new member of the group and I think I originally posted this in the wrong place. At present I am living in Grand Cayman with my husband. I am originally from the UK and all my family are back home. Recently My brother, who has Cerebral Palsy, visited us, and what a time we had. It was fantastic!! Off…
