Need some advice — 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.

Need some advice

Globster
Globster Community member, Community Volunteer Host, CP Network, Scope Member Posts: 2,320 Disability Gamechanger
With having cerebral palsy loud noises and bangs or someone yelling makes me feel so scared and anxious and sometimes it’s feels paralysing for me I would appreciate if anyone on the scope online could share any tips on how I break out because really taken over my life it just feels like that to me  :'(

I am a Community Volunteer Host. Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.

Comments

  • Biblioklept
    Biblioklept Community member Posts: 4,437 Disability Gamechanger
    @Globster I know a lot about anxiety and fear but I don't know if it's different with someone with CP as I don't have it. I tried to search online and the top result was a forum thread on here by @Richard_Scope about CP and the startle reflex https://forum.scope.org.uk/discussion/87808/understanding-the-startle-reflex-and-cerebral-palsy I don't know if that is helpful to you?? The replies have some tips too <3 
  • Jimm_Scope
    Jimm_Scope Posts: 2,361 Scope online community team
    Hey @Globster, I hope what Biblio has linked offers some help or advice. I'll look for more advice/ideas myself :) The community is here for you

    I'll be sending you an email so keep an eye out for it okay! 
    They/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
    Online Community Specialist

    Concerned about another member's safety or wellbeing? Flag your concerns with us. 
    Want to give us feedback? Complete our feedback form now.
    Opinions are my own, such as mashed potato being bad.
  • Globster
    Globster Community member, Community Volunteer Host, CP Network, Scope Member Posts: 2,320 Disability Gamechanger
    @Biblioklept I appreciate your response and sharing of the link with me is very much appreciated  <3
    @Jimm_Scope I appreciate your support and communication with me was greatly appreciate thank you very much for your time  <3

    I am a Community Volunteer Host. Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.

  • Sandy_123
    Sandy_123 Scope Member Posts: 44,020 Disability Gamechanger
    Hi @globster I hope the link @Biblioklept gave was helpful to you. Sorry to read that you are suffering with noises. 
  • Globster
    Globster Community member, Community Volunteer Host, CP Network, Scope Member Posts: 2,320 Disability Gamechanger
    @Sandy_123 the link that @Biblioklept shared is very helpful and it quite alright i hoping find a method that works for me to enable to allow deal with this and hopefully not let this takeover my life 

    Thanks so very much to amazing people on the scope online community are so helpful and truly kind and supportive and knowledgeable thank you once again  <3

    I am a Community Volunteer Host. Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.

  • Albus_Scope
    Albus_Scope Posts: 3,026 Scope online community team
    We're all here cheering you on @Globster :) 
    Albus (he/him)

    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.
    Opinions expressed are solely my own.
    Neurodivergent.
  • Globster
    Globster Community member, Community Volunteer Host, CP Network, Scope Member Posts: 2,320 Disability Gamechanger
    @Albus_Scope I appreciate your kind words is greatly appreciated  <3

    I am a Community Volunteer Host. Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.

  • chiarieds
    chiarieds Community member Posts: 15,902 Disability Gamechanger
    Hi @Globster - so sorry you're suffering from problems with loud noises. I don't have CP, but do suffer from hyperacusis; great difficulty with noise, as I seem very sensitive to it, which I'd put down to having another neurological disorder (Chiari 1 Malformation). 
    My children still tease & call me 'radar,' as even when they're whispering, I hear clearly, & they get away with nothing! 
    I've had to learn to live with it, being sensitive to bright lights, or anyone coming up behind me, which makes me feel the ground/floor is moving up & down.
    How to cope....the first thing I do in my head is to tell myself, 'I'm OK,' then next I concentrate on my breathing, which helps calm me down. Try this exercise: https://www.cheshire-epaige.nhs.uk/wp-content/uploads/2018/11/Diaphragmatic-breathing-techniques.pdf   you can do this in any position you feel comfortable in, & it's been found to reduce both stress & pain, & aid relaxation, so worth a try. This is my mainstay; an exercise I used to teach (as a physio), & use daily.
    Hope Biblioklept's link about the 'Moro reflex' has helped, & perhaps this too.
  • Globster
    Globster Community member, Community Volunteer Host, CP Network, Scope Member Posts: 2,320 Disability Gamechanger
    Thank you to all the scope online community members for all of the fantastic information and I will take some time to read the link in some of your comments. Thank you so much to the scope online community are truly amazing thank you to everyone once again  <3

    I am a Community Volunteer Host. 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.