Hello!

Emma95

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 😊. 

janer1967

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 

Emma95

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_Scope

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?

Emma95

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_Scope

Neuro-physio is the best place to start. Chiropractors deal with skeletal issues primarily. Is your balance the main change in your CP?

Tori_Scope

Welcome back to the community @Emma95 Good luck with your PhD! 

Scottyboy

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  . what experiences are you looking for?

Emma95

Richard_Scope said:

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. 

Emma95

Tori_Scope said:

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. 

Emma95

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  . 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! 

chiarieds

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.

Scottyboy

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 

WestHam06

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.  

Emma95

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. 

Emma95

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. 

Emma95

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_Scope

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!!

Emma95

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_Scope

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

Emma95

Brilliant thank you so much, you’ve been a great help!

Chloe_Scope

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.

WestHam06

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 

WestHam06

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_Scope

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!

Emma95

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. 

Emma95

Cher_Scope said:

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 😊

Emma95

Chloe_Scope 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. 

Chloe_Scope

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:

Chloe_Scope 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.

Emma95

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_Scope

That's okay @Emma95! I hope that goes well.

Richard_Scope

Hi @Emma95
Have you had any luck with a referral?

Emma95

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_Scope

Ahh this must be frustrating @Emma95! 

chiarieds

I'm sorry about this, @Emma95 & hope you get a referral in the not too distant future. Have you started your PhD?

Emma95

Chloe_Scope said:

Ahh this must be frustrating @Emma95!

Definitely! I'm hoping that I hear something back soon! I hope you're well.  

Emma95

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? 

Chloe_Scope

It certainly is needed @Emma95! Best of luck with it. We'd love to hear about what you find.

Emma95

Chloe_Scope said:

It certainly is needed @Emma95! Best of luck with it. We'd love to hear about what you find.

Thank you so much! I definitely will! 

WestHam06

Hi @Emma95, 
                        How are you? I hope you enjoy these early stages of your PhD and please do let us know what you find. Thank you

Emma95

Hi @WestHam06

I'm good thank you, not enjoying the cold weather much though! How are you? Thank you so much, I will for sure. I really appreciate everyone's support! 

Thank you, Emma 

WestHam06

No problem @Emma95, it's a really important subject and we thank you for the research you are doing, it's really needed. I'm pleased to hear that you are well, I am good thank you. I have to agree with what you say about the weather I look forward to hearing what you find in your research.  Thank you. 

Emma95

WestHam06 said:

No problem @Emma95, it's a really important subject and we thank you for the research you are doing, it's really needed. I'm pleased to hear that you are well, I am good thank you. I have to agree with what you say about the weather I look forward to hearing what you find in your research.  Thank you. 

@WestHam06 thank you so much, hahaha so lovely of you to day, I feel lucky to have the opportunity to do the research! I really hope some good comes of it. I’ll definitely keep everyone updated 😊. Many thanks 

Richard_Scope

The more research involving CP the better @Emma95, especially from a sociological perspective. 

Emma95

Richard_Scope said:

The more research involving CP the better @Emma95, especially from a sociological perspective. 

Thank you @Richard_Scope, it's definitely needed, I've hardly found anything so far. Many thanks for your support.  

Richard_Scope

Are you looking for anything in particular? I could help, the research will probably be a bit old but something to springboard off. Also, good to see you ate the cafe. You could help me try to shape the discussions.

Emma95

Hi @Richard_Scope, 

Many apologies for taking so long to reply, I have been preparing for my supervision meeting that's upcoming this week. This is actually something that I'm going to discuss with my supervisors so I will get back to you with this right after the meeting. No absolutely, everything is useful especially when there is limited literature. It was good to see you too, sorry I was quiet, I always am in group settings at first. Yes, I'd be very happy to help in anyway I can. Let me know if there's anything I can do. 

I hope you're well. 

Emma95

Hi @Richard_Scope, 

Many apologies for taking so long to reply, I have been preparing for my supervision meeting that's upcoming this week. This is actually something that I'm going to discuss with my supervisors so I will get back to you with this right after the meeting. No absolutely, everything is useful especially when there is limited literature. It was good to see you too, sorry I was quiet, I always am in group settings at first. Yes, I'd be very happy to help in anyway I can. Let me know if there's anything I can do. 

I hope you're well. 

Emma95

Sorry I've somehow managed to post my reply twice!

Emma95

@Richard_Scope, sorry I meant to say yesterday, the research you spoke about in the CP café sounded fascinating and very much needed! Please let me know how it goes, it would great to see more research in that area! Also, if you don't mind me asking, who was the doctor/consultant you mentioned you were doing the research with? I'm trying to get a sense of where medical staff might be taking an interest in CP beyond paediatrics. Many thanks. 

Richard_Scope

Hi @Emma95
Here is the link to that particular piece of research it's called Eternal: Health care for girls and women with CP across the life course
There is a lot more going on in the background more than I can remember in my lifetime. I'm on the steering group for Eternal, Pregnancy and CP and Ageing and Living Well with CP. The latter pieces of research are just getting off the ground. More than happy to talk to more about any or all of this

Emma95

@Richard_Scope Brilliant, thank you so much! That all sounds amazing! It would be wonderful to be able to talk to you about these, let me know when you have some time to do so 

Richard_Scope

Hi @Emma95
How are you doing? I have some availability on Thursday afternoon.

Emma95

Hi @Richard_Scope

I'm good thank you, how are you? Brilliant, I'm free anytime after 1pm if you have some time from then? Many thanks, I appreciate it. 

Richard_Scope

2pm? I can try to set up a Zoom.

Emma95

Richard_Scope said:

2pm? I can try to set up a Zoom.

Yes that would be great thank you. Do you need my email? 

Richard_Scope

Hi @Emma95 that's fine I can see it as I'm a staff member. Please don't post your email here  

Emma95

Of course, thank you again I appreciate this very much

Richard_Scope

I am pretty sure I have set it up!

Emma95

I got it, thank you so much 😊

Richard_Scope

Hi @Emma95
How are you? Did you have a good Christmas, albeit a very different one!

Emma95

Hi @Richard_Scope, 

Lovely to hear from you. I'm okay thank you, how are you? Christmas was a quiet one but still nice to have a break. How was your new year? 

The colder weather seems to make things feel a little worse - I forgot how bad I was on icy pavements! I hope you're well. 

Richard_Scope

It was very different from normal times but still enjoyable. Cold weather really does have an effect, I feel like I have the knees of a ninety-year-old
Have you seen the video that Scope helped produce? It might be useful for your studies.
Eternal Healthcare: Women and girls speak. The final film — Scope | Disability forum

Emma95

Hi @Richard_Scope, I'm very sorry for my delay in replying, I've had a lot of covid related problems to deal with in the last week! My knees feel exactly the same, I'll be glad when it starts to warm up a bit again! Thank you so much for the video link, it looks fascinating and it's come at exactly the right time! How is the research going? I'd love to be kept updated, it's going to be so valuable! I hope you're having a good week.