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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.
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CP and vertigo?
Hi, I’m posting this about daughter. Is there anyone else here that suffers from vertigo symptoms? My daughter’s symptoms started at 16 after ear infections and worsen during times of stress (on and off all through her final year at Uni). Virus or a problem with the ears has been ruled out, and the conclusion is that it is…
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Feeling lonely and in constant pain
I cant remember a time when i wasnt ill. I am 39 but am alone. I have my family around me but i feel lonely. I have many conditions that leave me in pain but i have lived with them my whole life so feel ready to vope with those even though they hurt. I was in hospital for christmas with bronchitis and the flu then at new…
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All in my head?? Or .....
I have suspected from very early on that my grandson may have cerebral palsy, he will be 1 years old next month and as the months have passed i have watched as he develops and my concerns havent eased any infact i am only more so convinced. But I am just his Nanny !!! His mum seems un-worried and i have to be very careful…
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Caregivers Should be Taught to Manage Feeding Tube Issues in Children, Study Suggests
Most visits to Accident and Emergency because of feeding tube complaints in children with cerebral palsy involve severe gross motor impairment and are easily managed by a physician, a study finds. Educating caregivers and other health professionals about feeding tube replacement would mean most feeding tube-related…
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Had to retire from work due to fibro and pain
I suffer from fibro and disc degenerative. due to pain and mobility issues I had to retire from work on I'll health.ss was a checkout op but legs kept giving way.pain got so bad at times I would loose consciousness that body would start to shut down.and had go to hossie in ambulance.i walk on 2 sticks or my mobility big…
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Spinal surgery for scoliosis caused by C.P
our son is nearly 11 and we are being encouraged to consider spinal fusion surgery for his neuromuscular scoliosis . We are so confused as to wether to proceed with the op or continue trying to manage his posture to minimise any progression of his existing scoliosis .He has severe quad CP , non verbal , orally fed . Can…
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Diaplegic Cerebral Palsy
Newbie here a mum of 10yr old Harry with Diaplegic Cerebral Palsy in Ashford Kent
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Mattress
Hi my son is 20yrs old with spastic quadriplegic cp. He wakes up every morning telling he's sore and it's the mattress. Can u tell me what mattresses u use and if u have the same issue thanks x
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Lower leg cramps
This might be of help to others who suffer from calf cramps. I have experienced lower leg cramps for many years and have now by chance found a solution. I was prescribed co-codamol 30/500 for back pain and this medication also stops me feeling the leg cramps! So wonderful to have relief from calf spasms!
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My son has severe spastic quadriplegic cerebral palsy
I have a 20yr old son with severe spastic quadriplegic cp. I've joined group for advice and opinions on certain matters x
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Friendships and meeting people
Hi, I am a mentor to a wonderful 19 year old young man who has cerbral palsy. He has some mobility issues but can walk. He is intelligent, has a great sense of humour and is great company. He went through main stream school albeit with help. He is doing very well indeed but the main sticking point is that he has very few…
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Fibromyalgia could it be something else
Hey all, Ive got Fibromyalgia, Depression, Social Anxiety, JHS and three herniated discs. Now the Fibromyalgia is getting worse. The pain, my mobility and the numbness. Im back and forth with my GP. Who are usually helpful. My spinal consultant is also helpful, but Im starting to wonder a few things about my treatments. If…
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Respiratory and Cardiovascular disease and Cerebral Palsy
The information in the following article may be upsetting. Adults with cerebral palsy in England may have an increased risk of death due to cardiovascular or respiratory system diseases, a study suggests. The study, “Mortality due to cardiovascular disease, respiratory disease, and cancer in adults with cerebral palsy,”…
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I have mild cerebral palsy
Hello. Just a little about me. I'm 58 and have 'mild CP down one side of my body. Its caused me so many issues over the years. Balance is really bad. Sitting here writing this with a black eye following a fall on Thursday and now waiting for a knee replacement due to sevre artheritis. Its not all doom and gloom though. I…
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I have Cerebral palsy and also have the Intrathecal Baclofen Pump
Hi am sunflower I have Cerebral palsy and also have the Intrathecal Baclofen Pump inside my back to help with muscle spasms in my legs and arms If you like to ask me any thing please do about the pump sunflower x
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Cannabis Oil for CP
I have CP due to a Medical negligent home birth in 1965. This resulted in a high court case (Kelly V Bastible and others) I now see a neurologist every 3 months for botox injection into my neck for pain relief. I have also been chosen for inclusion onto cannabis oil trials. That being said does anyone use cannabis oil for…
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Emergency Spinal support solution needed
My 26,year old nephew's cp is profound and needs Spinal and leg braces, is feed by tube and is non verbal. Despite all this his intellect is keen and he is generally happy. But he has been really ill in hospital for two months, it started with a chest infection but there were other complications that developed in hospital.…
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Pain, muscle tightness, and loss of confidence
Hi all, Not sure if I am posting this in the right place, so apologies if not. I am hoping for some advice. I have cerebral palsy, and arthritis. I had a bit of a fall on Christmas Day, I wasn’t hurt, but have since been feeling very stiff, and very achy, and I feel like walking is harder. Has anyone experienced similar,…
