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We want to hear from you: please tell us about your experience of the online community.

Hi, I'm Richard - ask me questions about CP

Richard_Scope

Hi, my name is Richard and I work for Scope in the role of Specialist Information Officer - Cerebral Palsy. I will be providing specialist support to various aspects of Scope's work including the online community, helpline and information teams.

I live with my wife and our daughter. I have spastic quadriplegia and use a wheelchair. As some of you may know I volunteered as a Community Champion in my spare time. To date my career has been varied and I even tried my hand at running an Amusement Arcade! I join Scope from the Higher Education sector, where I worked for a Russell Group University for four years. I am passionate about removing barriers to Higher Education and that disabled people can realise their aspirations whatever path they choose.

Whatever your experience of CP, I am keen to work with you to improve the information we offer to people living with CP and their families.

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Comments

grannieannie

Looking for support for my daughter.Her daughter Eryn has RH Hemiplegia.She is 14 months old

Richard_Scope

Hi @grannieannie
Thanks for posting and good to meet you! What kind of support are you looking for, for your daughter?

Has your daughter already had an appointment with a Paediatrician?

I will include a link to a webpage that lists local groups and Disabled People's Organisations (DPO).
https://www.scope.org.uk/support/disabled-people/local/about

I will also include a link to some information about when your child has received a diagnosis.

https://www.scope.org.uk/support/families/diagnosed

I hope that helps.

Sam_Alumni

So good to have you on board @Richard_Scope

Markinsutton

Hello @Richard_Scope and welcome

I have CP myself. Do you feel that attitudes to people with CP have changed over the years? When I was younger I was written off and was told I wouldn't achieve much, so everything I have achieved has been an inspiration to others. Now in my 40's I have found it is best to reduce my expectations on what I can achieve. I want to set example to others with my type of CP and run a small group find it hard to as some people say, their son or daughter would never achieve what I have done but I don't have the case studies to back it up. Do you have any resources so show the trend of what support people can achieve.

I understand this could be a complex answer so no worries if it is too much.

Richard_Scope

Hi @Markinsutton
Good to talk with you.
I had a very similar start to you in so far as my Mum was told that I would never speak, or sit up on my own and that she should give me up and place me in an institution. Thankfully, that medical opinion fell on deaf ears.
I do think that attitudes have improved slightly, particularly in the medical profession in terms of diagnosis for children but that is not to say that further improvement isn't required especially around the provision of care for adults with CP.
I'm not sure I have fully understood your question. Are you asking for data on what people living with CP can achieve if given the right support?

Richard_Scope

Hi @Lucysam25

I'm so sorry to hear that you're feeling this way. You are a member of our community and we appreciate you.

If you are having thoughts of suicide, it is important that you discuss them with someone who is qualified to help. Please call the Samaritans on 116 123 (free) or email them at jo@samaritans.org. You might also benefit from reading MIND’s information on how you can help yourself.

I'm am going to move your post to the https://community.scope.org.uk/categories/talk-about-pip-dla discussion. There is a lot of useful information within there.

Please stay in touch.

ClareWilliams

Hi Iv been talking to you on my post but seen this link where I can ask you about cp..
I have been told my son has high tone in back leg muscles, but won’t say if it’s co til he’s had his mri scab which we are currently waiting for.
He started off with knees bent constantly even when standing an cruzing, he did start taking steps independently an whole holding our hands but then stopped walking then was able to do few steps again after physio started, but now he’s stopped walking altogether an can’t bare any weight. Does this sound familiar to cp? I have no experience in this at all an there is a lot of mixed references online and different people saying different things.
Hope this is ok?

Richard_Scope

Hi @ClareWilliams
Thanks for getting in touch and it is great that you have joined the Community. Please always feel free to ask questions. Remember there is no such thing as a silly question and we are here to support each other.

Some of the things that you describe could potentially be indicators of a child having a condition such as cerebral palsy (cp) but not necessarily so. I think the important point here is that you have concerns and you sound as if you need those concerns addressing by an appropriate person. It would not be appropriate for me to speculate if your has cp.

By definition, cerebral palsy is a disorder of posture and/or movement that results from the immature brain either being damaged or failing to form correctly. It is a diverse condition that affects each individual in a way that is specific to them. It can display itself in a way that is similar to other developmental conditions. Diagnosis is normally made by a paediatric doctor after a period of observation and tests to rule out the possibility of other conditions. A brain scan can often assist with identifying areas of brain damage but not in every case. There is no stand-alone test for cerebral palsy, diagnosis is more of a process that looks at evidence from different sources (such as medical history, general tests, scans and observation). The average age of diagnosis is 18 months but sometimes much later, especially if the person is only very mildly affected or has other health issues that are complicating matters.

Have you been given a date for his MRI scan and are you in contact with a paediatrician?

You can also ask the physiotherapist to give you stretching exercises to do at home. If you are not already.

Sometimes the online environment is not the best place to seek out medical information, it can increase your concerns in my experience.

Keep in touch.

ClareWilliams

@Richard_Scope Thank you for messaging me back. Yes we are in contact with consultants/ general paediatrician. Due to his age there’s apparently only one hospital in our area that would do it so waiting for phone call with date. He does already have physio an she’s given my some things to do so I do my best to do them with him.
My doubts are because he’s so up an down but now got worse.

Richard_Scope

I'm certain you are doing your best @ClareWilliams and that is all you can do. The important thing is that you have made the appointments and you are already ahead of the curve in terms of physiotherapy. When I was younger physio was crucial to keeping me as mobile as I could be.
Your son will have 'better' days than others. Tiredness can make muscle tightness worse. Do you have heated swimming baths near you? Swimming is fantastic for doing those stretches without him realising he is doing it and obviously he is not putting the added strain on his legs by weight bearing whilst in the pool.

ClareWilliams

@Richard_Scope We have just been told about swimming so that’s now a weekend family thing.
he don’t seem to get tired he just can seem to bare his own weight now, he’s getting very frustrated tho, because he really wants to do it an he try’s all time but falls ?

Richard_Scope

The feeling of frustration is very common, I still get it on occasion! Gentle consistent encouragement is the key. Your son will adapt and find his own way of doing things. The swimming will be of great benefit to him. You are obviously blessed with a very determined little boy @ClareWilliams!

ClareWilliams

He is very determined, happy an very cheeky lol

Richard_Scope

They are the best qualities to have @ClareWilliams

ClareWilliams

It definitely is. Sorry can I just ask another question.
On quite a lot of sites of not all of them it says you don’t get worse with cp is that correct?

Richard_Scope

Yes, of course, you can. The current level of understanding about cp is that the impairment does not worsen. However, I have to add that ageing and life choices can make the effects of cp worse over time. What I mean by that is it is important to exercise and keep up with physiotherapy. As this will help maintain the greatest level of mobility.

ClareWilliams

Can you also move the effect areas tidy sometimes with no problems and then nothing against? So he was able to walk and bare weight an then couldn’t do anything then he could an now he can’t again. Is that common?

Richard_Scope

Good morning @ClareWilliams
I'm afraid I don't understand the first part of your question. For the second part; He will have better days than others. For example, If I had, had a busy day physically chances are the next day my legs would be particularly tired.

ClareWilliams

Sorry I mean he was able to use legs but now he can’t do anything other than crawl.

Richard_Scope

Hi @ClareWilliams
He is probably doing that because it is the easiest way for him to get around, requiring less effort. I personally would not be too worried by that at this stage.