Hello everybody my name is Ammar I have just joined the community. I'm looking for treatments — Scope | Disability forum
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Hello everybody my name is Ammar I have just joined the community. I'm looking for treatments

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Ammar22
Ammar22 Community member Posts: 3 Listener
edited May 2022 in Cerebral palsy
Hello everybody my name is Ammar I have just joined the community hoping to gain insight on CP and how people deal with it.



I am 28 years old I have CP spastic diplegia and I also have severe stammer. I was just wondering if there is more I could do to improve my condition. 


I have done speech therapy, physiotherapy, acupuncture and hyperbaric therapy but they did not work for me.

furthermore each year my health gets worse and worse and now I can barley say a word and that makes even more alone and lonely than ever I feel lost don't know what to do




Please share your thoughts if you know treatments that worked for you or if you have an advice on CP or if you know any new treatments worth trying.



Thank You











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  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    Welcome to the community @Ammar22 :) Thanks for joining! It's great to have you with us. 

    I've moved your post into our CP category, which you might want to have a look through. We have many members with CP who've described their symptoms changing with age, and who are looking at treatment options. Here are a couple of examples:We also have an information and advice page on our website about ageing and CP, which you might find helpful. 

    I'll tag @Richard_Scope in here in case he has any further advice. 

    I'm also sorry to hear that you have a severe stammer. It's a shame that speech therapy hasn't worked for you in the past. Have you tried that again since your stammer has worsened? 

    You may also want to visit STAMMA's website :)
    National Campaigns Officer, she/her

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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,978 Disability Gamechanger
    edited May 2022
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    Hello @Ammar22. Welcome to Scope’s forum. It is great to see you have joined us. How are you today?

    I am sure how you can gain insight on CP and how people deal with it. I will tag @Richard_Scope in this as Richard is our most knowledgeable person for CP. You might also find our discussion section ‘Cerebral Palsy’ useful.

    It sounds difficult that you have tried a wide range of things but they did not work for you. However, I always believe that helps to move you steps closer to what might work. Is there anything which you find at least semi-helpful?

    I am hearing it is upsetting and isolating for you that your health gets worse and worse and now you can barely say a word. It is understandable this is difficult and it is more of a reflection of the difficult situation that you are in, rather than yourself as a person.

    I would also like to reassure you that you are never alone with us. We are all here for you and you don’t have to face this, or anything else, alone if you don’t want to. Have you been able to tell anyone else about what is going on for you and how this is making you feel?

    Take care for now and I will look forward to hopefully hearing from you again soon  :)

    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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  • Richard_Scope
    Richard_Scope Posts: 3,650 Scope online community team
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    Hi @Ammar22
    I'm really glad that you decided to join the community. Did you get the information that I emailed to you about the CP Team at UCLH?

    Are you still receiving speech and language therapy?
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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

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  • Ammar22
    Ammar22 Community member Posts: 3 Listener
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    Thanks for your wonderful support I will ask my Gp to refer me to the CP Team at UCLH as Richard suggested and see what happens from there.

    Also I am no longer receiving speech therapy because I found it unhelpful but things might change.

    in the meantime if anyone have more suggestions on CP please share

    Thank you
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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,978 Disability Gamechanger
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    Thanks for your response @Ammar22. Good luck with your referral to the CP team at UCLH. Please feel free to let us know how you get on.

    It sounds difficult that you found speech therapy unhelpful. However, ruling things out which don't help point you steps closer to what might help you. Different things work best for different people. 

    In all honesty, I don't have expertise in CP. This means I can only hope people with more knowledge in this area are able to respond to you soon.

    In the meantime, I am here and listening to you - we all are  :)
    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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  • Richard_Scope
    Richard_Scope Posts: 3,650 Scope online community team
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    Hi @Ammar22
    Not sure if you might have found it already but we have a rather large thread called Tips for managing your CP, in the CP section. There are some real gems of advice in there but as I said it is a large thread!
    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. 
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  • Ammar22
    Ammar22 Community member Posts: 3 Listener
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    Hello Richard

    No I havent seen this thread thank you for suggesting it I will check it out.
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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,978 Disability Gamechanger
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    I hope you find the thread at least semi-useful @Ammar22. If we can do anything else to help, please don't hesitate to let us know. 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.
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