Cerebral Palsy
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.
Keep on top of what's being talked about in our recent discussions and have your say!

Hello!

Emma95Emma95 Member Posts: 21 Courageous
edited September 21 in Cerebral Palsy
Hi, my name is Emma, I’m 24 (25 in November) I have mild CP. I haven’t posted on here for a few years, so wanted to reintroduce myself as I’m about to begin a PhD in Sociology in October, focussing on experiences of CP, and I’ve always found the forums on here very useful for learning about people’s experiences. It would be nice to get to know people who have had similar experience to my own, as I live in rural area, I’ve never managed to do this!

I’m also wondering, if anyone has had experiences with chiropractic care? I’m considering it as an option, as my pain is increasing and my balance is getting worse, so I’m wondering if a chiropractor could help me better maintain my posture and walking ability etc. Thank you in advance, and my apologies if this should have been posted elsewhere, I’ll happily remove and repost if needed 😊. 
Tagged:

Replies

  • janer1967janer1967 Community champion Posts: 4,577 Disability Gamechanger
    Hi and welcome back great to see you and good luck with your study 

    I have used a chiropractor for a back injury not for CP but they were amazing but not really able to advise for your condition 

    Maybe speak to one and get their input I will also tag in our CP expert which may help 

    @Richard_Scope can you advise here 
  • Emma95Emma95 Member Posts: 21 Courageous
    Hi, thank you! 

    Glad to hear it’s helped with your back injury, no worries, thank you for your advice. 

    Brilliant thank you very much!
  • Richard_ScopeRichard_Scope Administrator Posts: 2,329 Scope community team
    Hi @Emma95
    Great to meet you again! I live with quad CP and there are lots of other folks on here with a wealth of experience in CP in all its various forms. Congratulations on starting your PhD the more research into our disability the better.
    I'm really interested to know why you are considering a chiropractor to help you with your balance, is this something that has been suggested by your G.P.?
    The best way to preserve your mobility is by staying as active as possible. Doing things like swimming is excellent because it is low impact on your knees and ankles. Strength training is also very beneficial for people with CP. Do you have regular physiotherapy at all?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Emma95Emma95 Member Posts: 21 Courageous
    Hi Richard, thank you, thank you for your reply. I’m looking forward to getting more involved on here! Thank you, yes it’s definitely needed. To be honest I’m lost with how to help myself so with  balance it was an idea I had, maybe hoping that a chiropractor could help with things overall, but as I say I’m not sure where is the best place to turn or whether this would be the case. 

    Thank you for your advice, I am going to look into swimming once things become clearer with Covid-19, as my mum is part of the group that were required to shield, so I’m trying to be as careful as possible. Thank you for reminding me about strength training and physio - I’ve spoken to my GP recently who has referred me back to the neuro physios, but at the time it was uncertain when such clinics will be open again. I’ll chase this up! 

    Thanks again for your advice. 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,329 Scope community team
    Neuro-physio is the best place to start. Chiropractors deal with skeletal issues primarily. Is your balance the main change in your CP?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Tori_ScopeTori_Scope Administrator Posts: 1,305 Pioneering
    Welcome back to the community @Emma95 :) Good luck with your PhD! 
    Online Community Coordinator

    Want to tell us about your experience on the community? Talk to our chatbot here and let us know what you think
  • ScottyboyScottyboy Member Posts: 21 Connected
    Hi Emma95. I too have mild CP. I've also tried a chiropractor in the last couple of years and Richard is right, I doubt if they will have a great impact as they didn't for me. I also have balance issues but walk unaided. Born v premature.  Still coming to terms with it all tbh as its effected everything, despite me trying to ignore it. Still...wow on the PhD...that sounds great!. I'm currently re-training and doing a housing management diploma having done a degree many moons ago  :D:). what experiences are you looking for?
  • Emma95Emma95 Member Posts: 21 Courageous
    Neuro-physio is the best place to start. Chiropractors deal with skeletal issues primarily. Is your balance the main change in your CP?
    Thanks Richard, good to know. I’d say it’s one of my main symptoms. My pain has increased and I seem to be tripping more easily, I’m trying to get used to the idea of using a walking stick, at least when I’m tired, to try and stop this. 
  • Emma95Emma95 Member Posts: 21 Courageous
    Welcome back to the community @Emma95 :) Good luck with your PhD! 
    Thank you so much Tori, people seem so kind on here, it’s lovely to get this support. Hope you’re keeping well. 
  • Emma95Emma95 Member Posts: 21 Courageous
    Scottyboy said:
    Hi Emma95. I too have mild CP. I've also tried a chiropractor in the last couple of years and Richard is right, I doubt if they will have a great impact as they didn't for me. I also have balance issues but walk unaided. Born v premature.  Still coming to terms with it all tbh as its effected everything, despite me trying to ignore it. Still...wow on the PhD...that sounds great!. I'm currently re-training and doing a housing management diploma having done a degree many moons ago  :D:). what experiences are you looking for?
    Hi! Ah right, I’m glad I’ve asked for advice then before pursing it! I’m sorry to hear about your balance issues, it can be so difficult, I too walk unaided, and completely understand wanting to ignore changes in your CP/body so you’re not alone there, if that helps at all. Thank you so much! I’m looking forward to it! That sounds brilliant. What did you do your degree in? At the moment it’s quite vague, but I think it will be anyone aged 18+  that was given a ‘mild’ diagnosis of CP. I say ‘mild’ in that way because I’m starting to realise how differently the same diagnosis can manifest for people! 
  • chiariedschiarieds Community champion Posts: 4,709 Disability Gamechanger
    Hi @Emma95 - Firstly, I do hope your studies go well, as I agree with Richard that any further research into CP is both welcome, &, as you say, needed.
    I'm coming at this from a totally different angle, & with prejudice, but I hope I can give a balanced view. I worked as a physio with children with CP a long time ago. So I'm a physio, & will always have some bias, & recommend this. What seems evident, is that people with CP often benefited from physio as children, but there's little research as to what, if any treatment, adults with CP receive, & there's therefore a lack of continuity.
    I did look into chiropractors, & this is what the NHS site says: https://www.nhs.uk/conditions/chiropractic/
    All the issues you mention such as pain, posture, & balance problems, a neurophysio should be able to address. I appreciate that due to Covid-19, all these things are taking so much longer than normal, which is an issue.
    Perhaps like yourself, I also take issue with the word 'mild;' you either have a disorder, or you don't, & it will likely have an impact on your life.
  • ScottyboyScottyboy Member Posts: 21 Connected
    Hi @Emma95. Well my story might be a little unusual I'm not sure. I've grown up struggling with mobility and a scissor gait etc, struggling in school with PE and knowing I couldn't do certain activities, but sadly nobody in my family addressed it or talked to me about it. So I've kind of had to 'discover' my CP without much support later in life. Its affected every part of my life massively. I recently discovered the book 'Celebral Palsy' by IIana Estelle, and much of her story echoes my own.. A good read, I Recommend.
    I studied Criminology at Uni as I love all the true crime stuff etc, and went on to do CSI work for a few years in the Police but left due to bullying and the gruesome nature of the work. As the old saying goes..everyone's got a story and a book in them 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 682 Pioneering
    Hi @Emma95
                            How are you? Firstly, welcome to the community and thank you for joining us. Secondly, congratulations on your PhD and absolutely any further research in to CP is both welcome and needed. I too, have CP, so if there is anything you would like to ask, then please do and I'm happy to try to answer as best I can. I hope you are able to get access to the support you need soon with regard to the pain and balance issues you mention, that can't be easy and I imagine must be a little frustrating. Thank you.  
  • Emma95Emma95 Member Posts: 21 Courageous
    chiarieds said:
    Hi @Emma95 - Firstly, I do hope your studies go well, as I agree with Richard that any further research into CP is both welcome, &, as you say, needed.
    I'm coming at this from a totally different angle, & with prejudice, but I hope I can give a balanced view. I worked as a physio with children with CP a long time ago. So I'm a physio, & will always have some bias, & recommend this. What seems evident, is that people with CP often benefited from physio as children, but there's little research as to what, if any treatment, adults with CP receive, & there's therefore a lack of continuity.
    I did look into chiropractors, & this is what the NHS site says: https://www.nhs.uk/conditions/chiropractic/
    All the issues you mention such as pain, posture, & balance problems, a neurophysio should be able to address. I appreciate that due to Covid-19, all these things are taking so much longer than normal, which is an issue.
    Perhaps like yourself, I also take issue with the word 'mild;' you either have a disorder, or you don't, & it will likely have an impact on your life.
    Hi chiarieds, thank you so much, yes, I’m seeing more and more how needed it is! I really appreciate your perspective, and I definitely agree with the lack of continuity, research concerning adults is relatively tiny compared to childhood studies. Although I completely understand this is necessary, it often feels like, for me anyway, that you are forgotten as an adult with CP (or even in some cases post 16!).  hadn’t thought of it specifically in terms of physio, but it is such a crucial part of CP treatment, so thank you for pointing this out. Thank you so much for looking into chiropractors, I’ll be sure to give this a read tonight. Yes, I think it’s going to be a longer wait than usual, but I’m hoping it will be worth it. Frustratingly, I was under a neuro physio, but they discharged me saying I was ‘too complicated’ but as my symptoms now seem worse, I’m hoping they can help with it. Exactly, I only wish more people outside of the CP world could appreciate the impact it can have! Many thanks again for your reply, I very much appreciate it. 
  • Emma95Emma95 Member Posts: 21 Courageous
    Scottyboy said:
    Hi @Emma95. Well my story might be a little unusual I'm not sure. I've grown up struggling with mobility and a scissor gait etc, struggling in school with PE and knowing I couldn't do certain activities, but sadly nobody in my family addressed it or talked to me about it. So I've kind of had to 'discover' my CP without much support later in life. Its affected every part of my life massively. I recently discovered the book 'Celebral Palsy' by IIana Estelle, and much of her story echoes my own.. A good read, I Recommend.
    I studied Criminology at Uni as I love all the true crime stuff etc, and went on to do CSI work for a few years in the Police but left due to bullying and the gruesome nature of the work. As the old saying goes..everyone's got a story and a book in them 
    Hi Scottyboy, I’m sorry to hear of your struggles, CP can be difficult enough, never mind trying to manage it without support. This is why support forums such as those on Scope are so important, although not the same, they hopefully help you feel less alone. Thank you so much for the book recommendation, I’ll definitely be looking into reading it. Criminology has always sounded so interesting, I’m sorry about the CSI, that sounds horrible. I’m glad you’re out of there now if it’s like that. Thanks again for your help. 
  • Emma95Emma95 Member Posts: 21 Courageous
    WestHam06 said:
    Hi @Emma95
                            How are you? Firstly, welcome to the community and thank you for joining us. Secondly, congratulations on your PhD and absolutely any further research in to CP is both welcome and needed. I too, have CP, so if there is anything you would like to ask, then please do and I'm happy to try to answer as best I can. I hope you are able to get access to the support you need soon with regard to the pain and balance issues you mention, that can't be easy and I imagine must be a little frustrating. Thank you.  
    Hi WestHam06, 

    I’m okay thank you, how are you? Thank you for your kind welcome! Thank you so much, I really appreciate all this support and congratulations. I will definitely have questions as my PhD progresses so thank you for the offer, I’ll be speaking to my supervisor soon, so I’ll hopefully have  better sense of direction with it, so if it’s okay with you and everyone, I’ll be back in contact ASAP when I know more. That’s so kind thank you, I appreciate your understanding, it really helps you feel less alone with it all! 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,329 Scope community team
    Unfortunately, CP in adults wasn't really considered by medical professionals and physiotherapists, even though there are roughly 130,000 adults in England and Wales. The oldest person I have worked with is 98! 
    Two years ago I/Scope worked with the National Institute of Clinical Excellence (Nice) on guidelines for Adults with CP and the CP Care Pathway all G.P. on England should be well aware of these pieces of work by now and the referral pathways. Sadly, I have heard that people still have to fight to access services but I will keep shouting about the pathway from the roof tops!!
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Emma95Emma95 Member Posts: 21 Courageous
    It is so unfortunate, as people with CP can clearly live long and fulfilling lives! Do you know if these guidelines are available to view? I think they would be useful to read. I and many others will really appreciate the work you do and the voice you give to people. 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,329 Scope community team
    Hi @Emma95

    Yes, they are:
    NICE Guidelines
    and 
    CP Care Pathways
    There are lots of tips  in our CP Discussion thread. We also have CP information pages on the Scope website. if there is anyting else you would like to know about our impairment, please ask :smile:
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Emma95Emma95 Member Posts: 21 Courageous
    Brilliant thank you so much, you’ve been a great help!
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,601 Scope community team
    Hi @Emma95, how are you doing? Just wanted to say hi! I'm 22 and I have CP, also started using a walking stick near the end of high school. I can certainly relate to the mental barrier of accepting aids which weren't previously needed.

    Since then I have also started wearing splints again.

    Here is a blog post I have written about using a walking stick as a young adult which you might find helpful. :)
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 682 Pioneering
    Hi @Emma95
                            No problem and please do continue to keep us updated. We are always here on the community so please remember you're not alone though I absolutely appreciate that at times it can feel this way when you are in pain. I feel pain is also something we all individually experience and it is unique to us.  Best wishes. Thank you 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 682 Pioneering
    Hi @Chloe_Scope
                                   Thank you for sharing your blog, it is really inspiring and resonates. I also admire people who are able to share their experiences as a disabled person, to support other people with disabilities, thank you :) 
  • Cher_ScopeCher_Scope Administrator Posts: 1,422 Pioneering
    Hi @Emma95 and it's lovely to meet you.

    I hope to see you more about the community and am looking forward to hearing about how your PHD progresses.  A big good luck to you!
    Online Community Co-ordinator

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Emma95Emma95 Member Posts: 21 Courageous
    WestHam06 said:
    Hi @Emma95
                            No problem and please do continue to keep us updated. We are always here on the community so please remember you're not alone though I absolutely appreciate that at times it can feel this way when you are in pain. I feel pain is also something we all individually experience and it is unique to us.  Best wishes. Thank you 
    Hi WestHam06, I will for sure! I really do appreciate yours and everyone’s support. This community is so lovely! Pain does have a way of making you feel like that, but communities like this definitely go a long way in helping lift some of that! Thanks again. 
  • Emma95Emma95 Member Posts: 21 Courageous
    Hi @Emma95 and it's lovely to meet you.

    I hope to see you more about the community and am looking forward to hearing about how your PHD progresses.  A big good luck to you!
    Hi Cher, lovely to meet you too! It’s so nice to hear from everyone with things in common! I definitely will be getting more involved in the community, it’s a great place to be! Thank you so much, hope you’re doing well 😊
  • Emma95Emma95 Member Posts: 21 Courageous
    Hi @Emma95, how are you doing? Just wanted to say hi! I'm 22 and I have CP, also started using a walking stick near the end of high school. I can certainly relate to the mental barrier of accepting aids which weren't previously needed.

    Since then I have also started wearing splints again.

    Here is a blog post I have written about using a walking stick as a young adult which you might find helpful. :)
    Hi Chloe, 

    My applies for replying out of order, I’m great thank you, how are you? Thank you so much for reaching out, I’m sorry you have felt this too, it’s so encouraging to read your blog though, thank you so much for sharing. I’ve actually come across your blog before, and admired your work! I’ve been considering splints again, or at least one on my worst leg, but I’ve always found them so tricky and unsteady to walk in! I hope they’re helping? 

    I know I’ve said this in another reply, but it really is lovely to have find a community to share experiences with, this is something I’ve not been able to have outside of my family. 

    Looking forward to becoming part of this community. 
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,601 Scope community team
    WestHam06 said:
    Hi @Chloe_Scope
                                   Thank you for sharing your blog, it is really inspiring and resonates. I also admire people who are able to share their experiences as a disabled person, to support other people with disabilities, thank you :) 
    Thank you @[email protected], means a lot. :)

    Emma95 said:
    Hi @Emma95, how are you doing? Just wanted to say hi! I'm 22 and I have CP, also started using a walking stick near the end of high school. I can certainly relate to the mental barrier of accepting aids which weren't previously needed.

    Since then I have also started wearing splints again.

    Here is a blog post I have written about using a walking stick as a young adult which you might find helpful. :)
    Hi Chloe, 

    My applies for replying out of order, I’m great thank you, how are you? Thank you so much for reaching out, I’m sorry you have felt this too, it’s so encouraging to read your blog though, thank you so much for sharing. I’ve actually come across your blog before, and admired your work! I’ve been considering splints again, or at least one on my worst leg, but I’ve always found them so tricky and unsteady to walk in! I hope they’re helping? 

    I know I’ve said this in another reply, but it really is lovely to have find a community to share experiences with, this is something I’ve not been able to have outside of my family. 

    Looking forward to becoming part of this community. 
    Hi @Emma95, you certainly are not alone with this. Thank you for your lovely comments. Initially when I started wearing splints again it was tricky as it was a whole new way of walking. However, now it has been a few years I have fully adjusted and my gait has drastically improved as a result. I hope that helps. :)
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • Emma95Emma95 Member Posts: 21 Courageous
    Hi Chloe, my apologies for my delay in replying, you’re very welcome. Yes that’s understandable, great to hear it’s had that positive change for you. Definitely helps, I’m going to speak to my GP about a refer for these when I can. Thank you for your help 😊
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,601 Scope community team
    That's okay @Emma95! I hope that goes well. :)
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • Richard_ScopeRichard_Scope Administrator Posts: 2,329 Scope community team
    Hi @Emma95
    Have you had any luck with a referral?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Emma95Emma95 Member Posts: 21 Courageous
    Hi @Richard_Scope

    Thank you for checking in with me. Unfortunately not, I might try and make an appointment with my GP to see if things can be moved on a bit quicker, I doubt it at the moment though!

    Hope you're well, thanks Emma 
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,601 Scope community team
    Ahh this must be frustrating @Emma95
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • chiariedschiarieds Community champion Posts: 4,709 Disability Gamechanger
    I'm sorry about this, @Emma95 & hope you get a referral in the not too distant future. Have you started your PhD?
  • Emma95Emma95 Member Posts: 21 Courageous
    Ahh this must be frustrating @Emma95!

    Definitely! I'm hoping that I hear something back soon! I hope you're well.  
  • Emma95Emma95 Member Posts: 21 Courageous
    chiarieds said:
    I'm sorry about this, @Emma95 & hope you get a referral in the not too distant future. Have you started your PhD?
    Hi, thank you, I really appreciate everyone's support. I have started my PhD, just in the reading stages at the moment to decide which direction to take with it. Definitely excited to be able to do more research on CP, I think it's needed! Thank you for checking in with me. I hope you're well? 
Sign in or join us to comment.