Hi, I'm Agathe. Newly diagnosed mild left hemiplegic spastic cerebral palsy...at 36. — Scope | Disability forum
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Hi, I'm Agathe. Newly diagnosed mild left hemiplegic spastic cerebral palsy...at 36.

agathe
agathe Community member Posts: 1 Listener
edited May 2021 in Cerebral palsy
Hi everyone. I'm Agathe. I've just received a diagnosis of mild left hemiplegic spastic cerebral palsy at the age of 36. It certainly explains a lot about my childhood, and my body, and given my neonatal history it's not really a surprise, but it reeeally should have been picked up in childhood. Anyway, as an adult I've basically been diagnosed and sent upon my way to manage the best I can, as I've been doing all my life. There's really nothing out there for adults, which is odd really, as kids with cerebral palsy...become adults with cerebral palsy. It's not like it magically goes away upon adulthood. Even support groups (mostly parent-support) meet during working hours.
I have been offered Pregabalin for the spasticity, but I'm hesitant. I already have a high level of fatigue, and am afraid it would worsen it. I also drive and don't want it to impair my driving, obviously. I walk. Very ungracefully, and stiffly, with pain, but I walk (and fall lol) without aid, I wear soft neoprene ankle braces and I've just added an adjustable neoprene knee brace, which seems to be helping. I can't use anything obvious due to my field of work (ironically healthcare), so it has to be low profile. Like many of us, age is catching up with me earlier than it ought, I guess.
Anyway, That's me. Feeling a bit invisible really, in a way. Not really sure of the way forward, but especially in regards to my career and expected functional deterioration. Afraid for anyone to know I guess. An odd kind of irrational shame, fear of people stereotyping, limiting opportunities etc.

Comments

  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,487 Disability Gamechanger
    edited May 2021
    Welcome to the community @agathe :) Thanks for joining, and for sharing a bit about yourself. It's great to have you on board.

    I can imagine getting a diagnosis later in life has been quite a challenge, both physically and mentally. I've seen other adults with CP mention on the community that there's not enough support out there for adults with CP, so you're certainly not alone in feeling that. We have many members with CP, so hopefully the community can be a helpful space for you to find out more about CP, as well as get some advice and support.

    Have you ever checked-out the Adult CP Hub? You might be interested in some of the work they do. You may also want to visit their Facebook page, if you're a Facebook user. 

    I'm not sure what your working hours are, but Scope and CP Sport run a virtual CP Cafe meetup on fortnightly Mondays from 4-5:30pm. If you can make it, it could be a good way to meet other adults with CP, as the event is for those aged over 20.

    I also thought I'd link you to a few articles and resources you might find interesting:
    The Scope website has a good deal of information about CP generally, so it might be worth having a browse through there if you haven't already.

    Have you told your employer that you have CP? I know you've said that you have to keep your aids more lowkey, but I'm wondering whether you've spoken to them about the possibility of any reasonable adjustments at work?

    Lastly, I'll tag in our Specialist Information Officer for CP in here, as he's always happy to help @Richard_Scope.
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  • Sandy_123
    Sandy_123 Scope Member Posts: 43,635 Disability Gamechanger
    Hi @agatha welcome to the forum. Sorry you are feeling invisible, there seems to be a lot of people getting certain diagnosis in adult life, that they have always had, it does make me wonder why. There are lots of articles and support on here for cp.

    Cerebral Palsy (CP) Online Cafe

    https://www.scope.org.uk/advice-and-support/cerebral-palsy/
     Would you be able to also discuss with your gp about further information.  
  • Caz_Alumni
    Caz_Alumni Scope alumni Posts: 621 Pioneering
    Hello @agathe :)

    Just wanted to stop by, say hi and welcome you to the community! It's lovely to meet you. 

    How are you getting on? Have you managed to have a good look around the forum yet? And maybe also follow up on some of the links that have been posted by our other members? I know it's easy for me to say, but please don't let anything hold you back from getting involved in our recent discussions and coffee lounge activities. The last thing we would want is for you to feel invisible or out of place here. 

    If there's anything you need from us, please do give us a shout. Looking forward to getting to know you a bit better, and I hope that you start to feel at home here pretty soon!

    p.s. I'm in the same boat as you! Age is catching up with me pretty quickly as well. ;)

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  • chiarieds
    chiarieds Community member Posts: 15,858 Disability Gamechanger
    Hi @agathe - I just wanted to add my welcome to the group. I'm sure you'll find the info above of interest, & then you will get Richard_Scope's input. I'll just mention in passing that I'm surprised you were offered Pregabalin as it's something I take for neuropathic pain (altho I do get some spasticity, but I don't have CP). I would have thought it more likely for you to be offered Baclofen from what I've read.
    Hydrotherapy would be of benefit, & also physiotherapy. Have these been mentioned?  :)
  • Richard_Scope
    Richard_Scope Posts: 3,614 Scope online community team
    Hello @agathe
    I can completely empathise with your feelings and I wholeheartedly agree that there should be more for adults like us with cerebral palsy. As you rightly say, we don't hit 18 and all of a sudden we are non-disabled. This is why I and Scope worked with NICE to create the Adult CP Care Pathway. The guidelines cover treatment pathways and guidance to help support adults with CP live the life they choose. It's the biggest change in the approach to CP for 40 years and your G.P. just follow them and refer you to a neuro-physiotherapy as part of a multi-disciplinary team.

    My colleague @Tori_Scope has posted some useful links for you and I would just like to add HemiHelp and the Hemi Checklist. On a personal note, I am surprised that you have been prescribed Pregabalin as a low dosage of Baclofen is usually used in cases of mild spasticity. It is perhaps worth having a conversation again with your G.P.

    Please do not feel alone. It is important to talk and not bottle things up. If you have any questions that you don't wish to ask on the community, feel free to email me.


    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Stayce
    Stayce Community member, CP Network Posts: 840 Pioneering
    edited May 2021
    Hi @agathe

    Welcome to the community?. Just wanted to reach out to you as I’m of a similar age to you with right sided Hemiplegia.

    I received my diagnosis as a child, but if it helps that wasn’t easy either. I don’t think there is ever a good time for these things, if that helps. I also resonate with you about navigating your way around appropriate treatments going forward. I found this particularly difficult in my early 20s when having to navigate this for myself as an adult for the first time

    I see that @Richard_Scope has highlighted Hemihelp and Hemicheck. These are great resources, give opportunities to meet others with Hemiplegia and will help you to start (when you are ready) to have those conversations with employers etc. For what it’s worth I also work in the healthcare field and have found this the best sector to appreciate and understand my condition than any other I have worked in. There will be people ready to listen and take it on board without judgement. Remember they already know what you are capable of and you are still you (with and without diagnosis), that hasn’t changed 

    My top tip would be to get a referral to orthotics to see what support they could offer you in terms of alternatives to your neoprene ankle and knee braces - some insoles might be beneficial to help with pain and your walking, that would in turn help to reduce fatigue. These can be low key type items, if that’s something you are worried about.

    i’d also recommend seeing a physio to get an exercise programme that you can follow at home, to help with stiffness and pain.

    I see that both @Richard_Scope and @chiarieds are surprised that you have been offered Pregabalin rather than Baclofen. I have to say I am not surprised. For mild Hemiplegia Baclofen (even in a small dosage) maybe too strong for some, whereas for others it might work fine. I say this from my own experience, I was prescribed Baclofen in my early 20s lowest dose possible  and only took one and was unable to walk. I had to crawl round the house until it wore off. The same thing happened with another drug similar in nature to Baclofen

    As a consequence of this experience, I am prescribed (as an when) a similar drug to Pregabalin that is primarily used for epilepsy or anxiety. Drugs of this nature just take the edge off of muscle spasms and stiffness associated with spasticity rather than blocking nerve channels completely

    If your unsure about taking it I’d try the non medicated routes first -orthotics and physio. I’d also ask some questions about whether you can take Pregabalin as an when you need it or whether it has to be taken every day. Along with what are the side effects, particularly in relation to your driving concerns (as many of these drugs do cause drowsiness and operating machinery isn’t recommended)

    Hope this is useful. If you want to ask me any further questions or just chat -message me on the community via your inbox ?

    All the best
  • Cplife
    Cplife Community member Posts: 55 Courageous
    Hello I'm cplife I'm knew on here I also feel as I'm getting older my cerebral palsy is more painful and I get tired very easily I also have osteoarthritis I'm   waiting for more physiotherapy treatment  I was born in 1970 and once I got to 16 no one wanted to know I was left in this scary world to just get on with  it  I did have my parents  but my mum always told me I would not have my own life because of my disability but I know now that she was only trying to protect me 
    But I did get married but now he is my ex husband because he abused me I also feel this has had a massive impact on my cerebral palsy. 
  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,487 Disability Gamechanger
    Welcome to the community @Cplife :) Thanks for sharing your experiences. 

    Please do take a look at the links and information posted above, ask feel free to ask if you have any other questions about CP and ageing or CP more generally. Do you know how long you might have to wait for your physiotherapy treatment?

    I'm sorry to hear that your husband was abusive. Did you report that at the time? Have you been able to seek any support since you left the relationship, or is that something you think could help? 
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  • Richard_Scope
    Richard_Scope Posts: 3,614 Scope online community team
    Hi @Cplife
    How are you doing? Did you receive my email?
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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