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Advice
I am thinking of writing a positive short story book about having cerebral palsy.I would appreciate what other people in community think about my idea?
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L4 & L5 disc bulges / pins&needles
Hi I began suffering with initial lower back pain in April 2018. This was not caused by anything such as fall, accident or lifting. I had no previous back pain (or any pain) issues & was in good health. It was a sharp pain as I sat down. This has now progressed to worsened lower back pain & pins & needles to my left hand…
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Future unknown
My little girl is 14 months old and we received a diagnosis of pending CP a few months ago. It has been described as mild and so far only seems to affect her gross motor skills. It appears to affect all four limbs but our consultant has not yet confirmed anything nor has he confirmed the type of CP she has. Her physical…
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Cerebral Palsy Register in Wales
A national register of people with cerebral palsy is being launched in a bid to help improve care for people with the condition in Wales. Experts say the register is urgently needed so people with the condition get the services they need. Campaigners say there is not enough information about the population of people with…
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Crohn's probiotics and cost!!!!
My consultant said to me that I needed to take probiotics to help with the crippling pain I'm in sometimes. He said they can't prescribe it and gave the name of the cheapest his patients have told him about. Its like £25 a month! I'm like what the f?!!! That's so expensive. I can't afford that. This is rubbish. Does anyone…
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Living with Cerebral Palsy? Could benefit from help trying to find a home to meet your requirements?
Hi everyone. I'm Eleanor and I work on the Channel 4 property programme Location, Location, Location. Thanks for letting me join the community. :) We are looking for people to apply for our new series. Need help finding your dream home? Kirstie and Phil are back for a new series! Buying a house can be tough at the best of…
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Carer for disabled Mum!
Hi Claire and everyone else :) I am a full time carer for my mum who is disabled , long story short she had a failed spinal fusion back in 1996, previously she was a nurse in a nursing home. She also has osteoarthritis, cervical spondylosis and a screw through a nerve in her leg from the spinal fusion. For the most part…
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I have cerebral palsy, looking forward to having chat
I have cerebral palsy and am mummy to a 12 year old. Looking forward to chatting to you all.
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My granddaughter's needs
My granddaughter is 3 (4 in June 2019) She has, what I would call a mild case of cerebral palsy. She walks and talks normally and her speech is normal. Her main disability is her right arm and hand. She can't use them properly and now I have noticed it is making her very frustrated as she can't use her right hand in play -…
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Food suggestions for child eating at a 7-month stage
I am the mother to a beautiful child named Rosie, who lives her life with Cerebral Palsy. She is 2 years and 3 months old and growing quickly! She struggles with chewing and swallowing foods but wants to eat anything and everything, I'm finding it hard to think of things for her to be able eat... i'm stuck in a rut! She…
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Excessive Sweating
My son, who is 27, has always had trouble maintaining body temperature, but now he is sweating so much that his clothes are getting drenched. Is this common in cerebral palsy? It generally happens when he is excited/nervous/or just using a lot of energy. Is there anything I can give him to help the situation. I am changing…
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Stress, chronic pain and shoulder surgery! (Ehlers Danlos Syndrome)
Hi all, I have had to take some down time from being a pain advisor recently due to mental health issues in a teen son at uni, stress causing an increase in my own symptoms from chronic pain and Ehlers Danlos syndrome, and me feeling unable to chat effectively with you all! Life is returning to a status quo - you all know…
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deluxotine (Cymbalta)
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Adult Cerebral Palsy Hub - Abandoned Adults with CP
Hi All, I have come across the Adult Cerebral Palsy Hub through my GP and thought I would share for many of us that are experiencing secondary issues as adults as a result of CP: Story behind setting up the Adult CP Hub can be found in these links…
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CRPS question pain management
Hello, my CRPS was a result of successful cancer treatment in 2014. I was finally diagnosed in 2016 having CRPS as the condition worsened. I'm very much on a spiral were I'm unable to do more and more without causing significant pain or causing a flare up. I was on 1,800mg of gabapentin a day but felt to have hit a plato,…
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security key safe
Hello everybody. I am looking for a security key safe (to attach to a wall) that a person with CP could open. There are lots of combination ones available but the gentleman I'm trying to find one for would not have the manual dexterity in his hands to open this. It's very important to him that I support him to find a…
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Public toilets
Hi my name is Kirsty and I have a daughter called Heidi she is 11 years old and has cerebral palsy she is a clever little girl and is in mainstream school Heidi is able to use the toilet with assistance from a hoist as she is getting older I am really struggling to left her when out in public as not many places have…
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Pain
I have straightening of the spine they r trying to take me off my pain meds as if new law so they say but if I don't have my meds I can't even get out of bed because the pain is that bad can't walk not even to get to the loo can u think of anything I can do I am so worried even with the meds I can do some little things…
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Chronic knee pain.
Hi Claire, Have you explored any non-drug related chronic pain relief and found it helpful? I have taken mostly coedine for pain relief since getting chronic pain for the past few years. I tried amitryptyline once and found it no good. Exercise helps me but it's getting to the swimming pool in the first place that's…
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14 year old son just diagnosed
Hi, not even sure where to start, but my 14 year old son received a diagnosis of cerebral palsy just before Christmas. Always knew there was something wrong, have not been told anything else, seeing paediatric neurologist this week hoping for information on what happens next. neither my son or I quite know what to think…
