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Has anyone here regretted their selective dorsal rhizotomy?
We learned today that for our daughter, a rectal dorsal rhizotomy would be an option. I started to read online, and found lot of positive experience reports, and now wonder whether anyone would not have the operation if they had the choice (again). I would also be interested in people who had had it themselves who could…
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Private neuro physiotherapist for children?
Hi all. Can anyone help me with finding a private neuro Physiotherapist for my 4 year old grandaughter please? She had CP complex needs is none verbal and also visually impaired. She lives in Cumbria. Any advice or information would be great thank you xx
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Financial help for parents with CP toddler
Hi, My one year old son has just been diagnosed with spastic cerebral palsy, which effects both sides of this brain/body. He is currently seeing an occupational therapist, physiotherapist & paediatrician regularly and has just been prescribed baclofen medicine. He is 14 months old and is not able to sit unaided yet…
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Getting help for my son with hemiplegia
We have a son who is now 18 and has a hemiplegia. He has recently become more and more angry and aggressive and tends to shout and swear when he is angry. We understand his frustration but we can not let this behaviour continue as he it is now effecting our neighbours. I think the key to the issue is that now he is 18 he…
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Hi, my name is Charliesmam and my 9 year old son has CP.
Charlie is 9yrs old and has cp. He walks unaided but the lack of physio, swimming and riding caused by covid this year has left him tighter than normal. We have a lot of behaviour issues too.
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Bridging the Gap: Translating Disabled Women's Sexual Health/care Stories using performance
Wednesday 14 & 21 October 2020, 4-6 pm on Zoom Women & Theatre and the University of Birmingham are running two exploratory online workshops in October as part of a new project to see how theatre can be used to translate research about experiences of sexual & reproductive health and healthcare (for women with CP).These…
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Question about adductor surgery
Hi, everyone! My name is Ally and I am based outside the UK. Five days ago, I had surgery for spastic diplegia (was very functional before, though, and could walk unassisted and even walk up and down stairs). It was pretty major and I had a femoral derotation osteotomy and an adductor myotomy to loosen the adductors. They…
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Hi im Oscar im 14 and I wrote a song about my CP
https://youtu.be/InULruQ9crs Please like, subscribe and share
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Living with cerebral palsy
I have cerebral palsy and struggle with certain things. I like to reach out to people with cerebral palsy and other disabilities to see if I can relate. Life with cerebral palsy is hard and I am sometimes treated differently to others which is not what I want. I have big dreams for the future and want to live a independent…
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We need a consultant for help with our 17 year old's CP
Hello, we are in West Sussex and are looking for a consultant to review my 17 year olds CP. we seem to have dropped through the gaps and have never had an NHS consultant as her diagnosis was private when she was 8. She is getting all sorts of new symptoms but we are only being offered pain management but I would like to…
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Support group?
Hello I live in Suffolk and I have cerebral palsy and associated conditions. I would quite like to meet other individuals in a similar situation and set up a support group for young people in the local area. If you are interested please let me know. I look forward to hearing from you
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Breaking news from 6 year old Caeden...
Here's 6 year old Caeden's latest Breaking News! ?? https://youtu.be/9MyXEX0ujRMGet subscribed so you don't miss out on the next videos...
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Holistic assessment of my wellbeing - CP
I live independently in Northamptonshire with CP, I am retired. I walk with a walker but slowing down and have just had an operation on my lower calf to remove a benign tumour. I would really like to see a CP specialist who could give me a holistic assessment of my wellbeing as my GP surgery tend to look at me through a CP…
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Why didn't the TENS unit work instead of opioids?
I tried out a TENS unit (transcutaneous electrical nerve stimulation) because of lower back pain and it didn’t work at all for me, I just thought it was annoying. Why didn't it help me? What reasons could there be? I really thought it would work so I could stop taking opioids.Anyone who have the same experience?
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My 2 year old with CP doesn’t understand he has arms
Hi everyone, I was wondering if anyone had a similar challenge with their child suffering from CP. My nearly 2 year old has been diagnosed earlier this year with spastic quadriplegia and has been given loads of support from the NHS but they mostly focus on his hips and legs, however I am mostly concerned he has yet to use…
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Wheelchair advice!
Good Evening Just before lockdown my little boy was prescribed a self propelled wheelchair. He doesn't need it indoors but he does get tired quite easily out and about and has outgrown his buggy hence the need. Anyway, 3 long months later, today we took delivery of his shiny new chair! Due to covid-19 they are doing video…
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Finding myself again
Hi everyone I’m Gavin, I’m 38 years old from South Wales. I was born with cerebral palsy and I also have a speech impediment. I have just posted my new blog about how lock down has helped me to find my confidence again! Please feel free to have a read and if you have any questions please just ask away ?…
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Face mask
Hi, I not sure whether you can help me. I have Cerebral palsy
and due to my involuntary movements I am unable to keep a normal face mask on,
I been told I need a full face mask just what nurses wear in hospitals. I want
to go out because I haven’t been out in months, I won’t go out without proper
protection for my needs. I…
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Changing Lives
Hello, my name is Emily Nicole Roberts and I'm 22 years old. After years of loathing my disability and cerebral palsy, I decided to use my life for positive means. I started a Youtube Channel last year in hopes to reach out to the thirteen year old Emily Nicole, that was so lost and felt completely unknown. I make videos…
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Sleep
My 3 year old son has a mild hemiplegia, he can not stay awake on the way home from pre school or if we go out in the afternoon he will fall asleep in the car. This then means he won't sleep at bed time and will be awake till 9 or 10 at night even if he only slept for a short time in the afternoon I don't know how to get…
