How I Mange My CP and Spasticity — Scope | Disability forum
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How I Mange My CP and Spasticity

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Richard_Scope
Richard_Scope Posts: 3,659 Scope online community team
in Cerebral palsy

My name is @Globster, I have Cerebral Palsy (CP). Cerebral palsy can cause spasticity (tightness) of the muscles in my hands, arms and body, this tightness causes me pain and discomfort. To help manage this, I was prescribed an oral medication called Baclofen, which helps to relax my muscles and makes movement a bit easier.  

After taking the oral medication for a while, I began to experience some unpleasant side effects, the worst of which was an upset stomach and diarrhoea. I wasn’t able to eat the food I enjoy or go out as much as I wanted to just in case I needed to use the toilet. My life had come to a standstill. It had a massive impact on me. The oral Baclofen was also not effective in relaxing my muscles either. Sometimes it would take my mum over an hour to help me get my trousers on because my leg muscles were still so tight.  

I decided that I needed to do something about the situation, so, I had a discussion with an Orthopaedic surgeon and they suggested that I try Intrathecal Baclofen Therapy (ITB) This involved having a pump fitted just under the skin near my stomach, like this picture of an ITB pump below. 

 

 

[picture of a grey ITB pump] 

 

The pump delivers a constant dose of liquid Baclofen to my body without many of the side effects that I experienced before. I must get the pump refilled with baclofen regularly otherwise the medication can become less effective over a period of time. 

The intrathecal baclofen pump has changed life for the better! I can eat all types of food again and do daily things much more easily. My daily life has improved,  I can do the things I love to do once again, like writing poetry. I feel like I have more control over my life now because my spasticity and tightness is being managed better by the baclofen pump. 

Obviously, everyone is different and these are my experiences. If you are experiencing problems as I did, please speak to your G.P. There are solutions that might work for you. 

Thanks for reading. 

Scope
Specialist Information Officer and Cerebral Palsy Programme Lead

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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,978 Disability Gamechanger
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    Thanks for sharing this with us @Richard_Scope - on behalf of @Globster :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
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  • durhamjaide2001
    durhamjaide2001 Community Co-Production Group, Scope Member Posts: 10,614 Disability Gamechanger
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    I know a friend who had that surgery didn't go to plan. 
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