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CP and sleep
I have mild CP and have had real trouble sleeping since childhood. I'm wondering if the two are connected? Any thoughts?
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27 year old daughter with CP
My 27 year old daughter has CP as of late she has been really tired all the time she is having blood test to see if there is a cause but I wondered if it’s her age ?
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Advice on connecting with people in a similar situation.. Liverpool area
Hi all, new to the forum. Father of a (nearly) 4 year old girl with suspected Cerebral Palsy and Global Delay. Neurologist not entirely ruled out a genetic cause for her condition and she has another MRI this week to look further at abnormalities in her brain. But she presents as having cerebral palsy and so is having the…
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Theraspecs
I have fibromyalgia and have become sensitive to light. I found some glasses om the internet called theraspecs which are supposed to help with sensitivity to light and are recommended for people with fibromyalgia. I was wondering if anyone had tried them and if they are any good.
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I was born with CP and couple of weeks ago I was diagnosed with hypermobility
Hiya, I'm stacey I was born with CP and couple of weeks ago I was diagnosed with hypermobility Due to having a bad dislocation knee cap ??
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Moving Overseas to Birmingham from Australia.
Hi Everyone! I'm hoping someone can point me in the right direction of where to start and get the right support. I am a single mother with a 5 year old son who has Cerebral Palsy, he is currently not in school as they start school a year late here so we are just about to transition. My plan is to move to Birmingham in…
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Stress seizures at 14 head rotating 20-30 a day
please help! My daughter has ataxic cerebral palsy, dystonia, speech and language delay, high high frequency hearing loss(recently fitted and operated on for cochlear implants) and epilepsy however been taking Carbagen carbamazepine for many years to control them, she also takes clonidine, baclofen and circadin to aid…
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fibromyalgia and therapy
I have had fibromyalgia probably over 20 years now, I am seeing a therapist who is trying to resolve my "issues from the past" The lady is very nice but clearly doesn't understand about fibromyalgia, she is trying to get me back into routines, getting up at a regular time, going out every day. She doesn't seem to…
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dual hand propelled wheelchair
I have Hemiplegic Cerebral Palsy. I went to my doctor on 30th May to be referred to the wheelchair service and less then a week later I was allocated a wheelchair. It arrived today, However it’s a standard wheelchair they delivered. I phoned the wheelchair service to say that a standard wheelchair is not suitable for me…
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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
