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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…
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Pain
Hi. I'm desperate for someone anyone to help me. I woke up crying because I've barely slept with the pain and discomfort I feel from my arm. Nobody will help me. All I've been offered is physio and all that has done is made the pain worse. I had to beg the physiotherapist to refer me for a pain killer injection on the…
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Weakness/co-ordination problems in my left hand! - Do I have CP?
I'm terrified of the weakness/co-ordination problems in my left hand! I'm having a brain MRI this Wednesday March 6th! I have other symptoms like collapsing vision field that I have to fight! I notice it playing the piano, and the cello, and the viola, and typing on a keyboard! I'm scared to death! I can't even tell my…
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Hi, my name is focus!
I'm a wheelchair user with cerebral palsy, happily married living in the north east of engEngl
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Driving with Cerebral Palsy
Hello All I have recently passed an automatic driving test. I was sent a B1 form to 'report' my condition to the DVLA. I sent a copy of my pass certificate as evidence alongside the form. I received my photocard license last week, does this mean that I am able to drive? I've had a look at the DVLA website, which says that…
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Everyone’s favourite - the startle reflex!
Hi everyone, My CP affects me in many ways, however one of the most prevalent (aside from the wheelchair, of course!) is that I have quite a high startle reflex. I’m mainly impacted by sudden/loud noise; many people just laugh when I jump as they don’t realise it’s part of my condition and just think I’m easily frightened…
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My little boy has just been formally diagnosed with mild CP
My little boy has just been formally diagnosed with mild CP to the left hand side of his body. I only know children with server CP so unsure of what to expect. Henry is 13mths (10mths corrected) so still very young. Looking for people with similar experiences.
