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CP and ageing
Hi I am nearly 42 have mild cp in my lower limbs. I have worked all my adult life till 4 years ago I could no longer manage so was I'll health retired at 37. I fought all my working life to stay at work but in my 20s my disability was starting to have a big impact on my joints and my body. I have been using walking aids…
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Psychological and Social Wellbeing in adults with Cerebral Palsy
Psychological and Social Wellbeing in adults with Cerebral Palsy – a survey for adults who are over 18 and live in the UK or Ireland. Those people who complete the survey will be offered the opportunity to be entered into a prize draw to win one of five £20 Amazon vouchers. The survey can be accessed at this link
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2yr old daughter diagnosed with left side hemiplegia last year
New here. Almost 2yr old daughter diagnosed with left side hemiplegia last year.
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Sleep problems with son after hip replacement
i all, I am hoping that maybe one of you have been in a similar situation and may be able to give some advise. My 18 year old son has cerebral palsy, is non-verbal and a full time wheelchair user. He underwent hip replacement surgery 6 weeks ago and in all aspects apart from his sleep he has had a really good recovery.…
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Do facet injections/Rhizolysis help?
Hi just wondering if anyone can advise on the above,they are my last option before more back surgery.
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Fibromyalgia?
Hello, I need a bit of advice please. I'm showing all the symptoms of fibromyalgia but Im unsure whether to go to the docs again about it. Been feeling like it for almost 12 months now. Symptoms include... Pain pretty much everywhere every day. Can't sleep at night because if I stay in one position for so long I seize up…
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How to talk to my 3-year-old grandson about his CP?
I’m asking for advice about how to talk to my 3 year old grandson. He has CP and has learned to walk in the last 6 months, brilliant! But his little nursery friends are beginning to ask questions about why he can’t walk properly. He has a “typical” very stiff legged gait and after using a Walker for a while he now makes…
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Activities for a child with CP
I am a mom of a child with cerebral palsy. I’m also a PT. I need help and encouragement to find an activity he can participate in.
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Amitriptyline
I’ve been on Amitriptyline 50mg for over 11 years for leg pain. The dosage has been reduced from 125mg. Today I received a call from the pharmacy that my Amitriptyline has been stopped. I called my GP and I was told NHS England guidelines now state that Amitriptyline can’t be prescribed alongside Fentanyl durogesic…
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5 yr old quad having nightmares everynight.
Hi I was wondering if anyone had any ideas on helping my daughter soothe through the night. She isn't on any regular medication and I'm sure she's not in pain when she wakes. She is up at least 4 times a night shouting the pirates have come ( nightmares) we have tried lower tog duvets and blankets as she is always sweaty,…
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It's how I am not who I am
Hello, I have
written a post to share in the hope that others can share their own experiences
if they wish too and I would like to please thank you for taking your time to
read this. It is my first post talking about my own experiences so I apologise
if parts come across unclear. I am in my mid-twenties and I have Cerebral…
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Private Neurologist appointment
I thought I would just share this with you as I find it staggering but you probably know already. I found out at work we have a private healtchare plan where you claim money back for physio, dentist etc also they will pay £500 for a consulation with a consultant and free MRI/CT scans. I just rung up BMI hospital which is 5…
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New Assistive Technology
My name is Tony Ellis,I am a professional inventor (one man band) that now develops Assistive Technology for conditions like CP, MND, MS etc. My first AT device is MBT that allows a user to control Alexa, Google Home etc to be controlled via processing breath (no speech required). I have successfully tested MBT with a…
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Lower back sharp pain - What to do next?
Hello all, A month ago (actually more than that) I had a sharp lower back pain on the right side while performing an exercise at the gym. Long story short : I didn't go to the gym since that way, because while I'm able to run again, I still have this pain that radiates into the buttock and down the back of my right leg.…
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Trying to fit in.
Hello, so I have Diplegia Cerebral Palsy and am currently in my 10th year in education. An awful lot of my peers go outside into the big wide world and do various teenage activities like going into the city centre, going to restaurants, going to parties etc. I can't do any of that at the moment and I must admit, I'm…
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My son was diagnosed with cerebral palsy a few weeks ago
Hello everyone, my name is Carrie. I am the mommy to two wonderful little boys. My youngest son was diagnosed with cerebral palsy a few weeks ago, he is only 5 months old. I look forward to being a part of your group, thank you!
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6 Tips for Managing Your Menstrual Cycle With Cerebral Palsy
When you have cerebral palsy, dealing with the challenges and obstacles of having a menstrual cycle every month can lead to increased spasms in your limbs or overall muscle tightness and pain. Of course, this can be stressful. Here some tips that may be helpful. 1. Find the menstrual product(s) that work well for you.…
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DVLA and Cerebral Palsy
i am just after some advice I have cerebral Palsy. I have been driving for 17 years and use hand controls to enable me to drive, I informed DVLA of this in 2002 when I passed my test I told them of my condition and my hand controls I have an exemplary driving record and have had no incidents (touch wood) I never go to the…
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Experience of CP and abandonment by NHS
Hi everyone, my name is Alan from Glasgow and I’m the father of Olivia who is 16 years old, and has quadriplegic cp and severe learning disability, Olivia is non verbal and registered blind, the reason I’m on here is because I’m looking for help as since Olivia has turned 16 it seems as if we have been left completely…
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Hemiplegia and Drumming
Hi Guys! My 6 year old has right sided hemiplegia and has taken an interest in drumming. His grip on his right hand is very weak and he keeps dropping the drumstick and gets really frustrated. Does anybody know of any aids that can assist him to hold the stick? Or any ideas how we can keep the stick in his hand without…
