CP and bladder control issues in later life? — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.
Please read our updated community house rules and community guidelines.

CP and bladder control issues in later life?

BIT2FAST4U
BIT2FAST4U Scope Member Posts: 21 Connected
edited September 2022 in Cerebral palsy
I am a 55 years old man with Athetoid cerebral palsy (also known as "dyskinetic cerebral palsy") and I use a powered wheelchair to get around. I have always had good bladder control, however is recent years I have had increased problems with the frequency and urgency that I need to pee. My GP has tried several medications that have not worked. At times I struggle to last an hour between toilet visits and I don't always get there in time. It takes time for me to get to the toilet and transfer etc. I don't have the coordination to use a urine bottle. I am at the stage of wearing pull up pads when I go out now in case I get caught short. I don't know if this is related to my CP or not. 
I just wondered if other males with CP had bladder control issues in later life?
I have two hospital appointments in the next two weeks. First is a bladder pressure test and the second involves putting a camera into the bladder. I am not looking forward to this at all. It is the embarrassment of having things placed through my penis, the worry if it will hurt or if I pee at the wrong time, and the complications that come with having CP that they may not be prepared for. And I don't know if it will lead to any successful treatment.
Has anyone had these tests and what was the experience like?

Comments

  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    Hello @BIT2FAST4U and thanks for your query, it's positive to see that you've reached out, and I'm sure you aren't alone in your worries around the tests you'll be having. 

    As a woman with CP, I can't answer your query directly, but I do understand what you mean about people "not being prepared for it". You are of course under no obligation to disclose your disability, but in my mixed experience, sometimes disclosing helps things feel less awkward. Other times I just don't feel in the mood to, and things are fine. 

    I'm tagging @Richard_Scope here, hopefully he can share his thoughts with you, but regarding the tests, is there a way you could have a chat with your GP or another specialist just to reassure you about what's involved and how it might feel beforehand?
    Online Community Coordinator
    Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to give us feedback? Complete our feedback form now.
  • BIT2FAST4U
    BIT2FAST4U Scope Member Posts: 21 Connected
    Thanks @Alex_Scope. I also have a speech impairment, which can make it difficult for people who are not use to me to understand me. Due to COVID I have had a phone appointment with the consultant, which is far from ideal as it ends up being a three way conversation with my PA interpreting. And I don't get time to ask questions really. So a chat with the GP etc is not that simple.

  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    Thanks for explaining @BIT2FAST4U that makes more sense now :) 

    I wonder if speaking with your PA about pushing for reasonable adjustments might be worth looking into? Reasonable adjustments are a legal requirement to make sure health services are accessible to all disabled people.

    You could ask for an appointment that has a longer time so you're able to communicate with the doctor without feeling rushed, or a completely different format, like a live chat function?

    I'm not sure if live chat is an option that is even available to be offered, but I would encourage you to ask about reasonable adjustments for any appointments, tests or consultations in future.

    Keep us updated with how everything goes, and please reach out if you need a hand. 
    Online Community Coordinator
    Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to give us feedback? Complete our feedback form now.
  • Richard_Scope
    Richard_Scope Posts: 3,614 Scope online community team
    Hi @BIT2FAST4U
    Good to meet you and thanks for posting. As we age with CP some of us will develop issues with continence. Men will typically develop what is called "urge incontinence", which is where you have to go and pee immediately.
    There are ways to manage it as suggested by the NHS, also given your age, have you had a prostate examination?
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • BIT2FAST4U
    BIT2FAST4U Scope Member Posts: 21 Connected
    As we age with CP some of us will develop issues with continence. Men will typically develop what is called "urge incontinence", which is where you have to go and pee immediately.
    Do you have any reference material or evidence to support this statement? It is not that I do not believe you, but it would be very helpful to have something to support this.
    I have had a prostate examination and I have been taking medication to reduce the size of my prostate for over two years now.
    @Richard_Scope for your help.
  • Richard_Scope
    Richard_Scope Posts: 3,614 Scope online community team
    @BIT2FAST4U here is some information on Ageing and CP and information on Urinary Tract Issues and CP when you next speak with your G.P. it might be worth discussing a medication called Solifenacin, anecdotally I have heard positive things. Have you also had a urodynamics test?
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • BIT2FAST4U
    BIT2FAST4U Scope Member Posts: 21 Connected
    Thanks @Richard_Scope
    Medication, I have tried NEDITOL XL (Toltrodine tartrate) 2mg in the past and I am currently taking TAMSULOSIN 0.4mg for an enlarged prostate and MIRABEGRON 50mg for an over active bladder. I have not heard of Solifenacin, I will ask my consultant when I have my test results. Tomorrow I have a hospital appointment for a Video Cystometrogram Test and another hospital appointment on 21st July for a Flexible Cystoscopy Test. I will see where I go from there.
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    edited July 2022
    You are welcome @BIT2FAST4U. It is the very least you deserve.

    Thanks for telling us a little bit more about your current circumstances and medication. How are you finding your current medication and feeling about your upcoming hospital appointments and tests?

    Good luck with your upcoming hospital appointments, and tests and asking your consultant when you have your test results. Please feel free to keep us in the loop with how things are for you, we are all here for you  :)
    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.

Brightness

Complete our feedback form and tell us how we can make the community better.