Cerebral Palsy
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Cerebral Palsy vs Mental Health

Richard_ScopeRichard_Scope Community Team Posts: 2,587 Scope community team
"Mental health conditions can be very debilitating, there is much research out there about this subject. But I was surprised at how little there was on mental health within the physically disabled population. As a disabled person myself, I was surprised to find little substantial material on the subject or in any general discussion on social media."


Liz Whiteley discusses the issues of CP and mental wellbeing.

How are you at the moment? Let's talk it through.
Scope
Specialist Information Officer - Cerebral Palsy

Want to tell us about your experience on the community? Talk to our chatbot and let us know. 

Replies

  • RichardLelRichardLel Member Posts: 40 Courageous
    Mental health service tradional functions on mental health disorders only and other psychical conditions or like autism that have major mental health impact tend to be excluded and put on different departments that deal with that illness. I get help for my  ptsd and only luck with help with my Aspergers as social worker is autism trained  as a bonus, but she not there for the autism which my main struggle.

    It can get very complicated becuase my mental health support is fragmented, because celebral palsy is one place, my ptsd is another place, my autism is another place and all connected with mental welfare and wellbeing. There time mental health can’t support my ptsd as I am survivor and that another place completely differant away from the nhs,

    It get crazy sometimes, I can see the funny side of it, like mental health nurse thinks I am hearing voices, I reply, I shout out random words because it nervous tick with autism as can be hyperactive. . Another time asked by amntal health nurse, about depression being upset and I turned around and stated I was in great deal of psychical pain and he went and got a pain consultant, what a bonus! 

    Most likely when see neuro rehab is take the advice back on how mental welfare works and give it to mental health end up doing allot. 

    That’s the thing at the moment as a patient passing allot of information back into mental health service with Autism and celebral palsy as a patient it’s one thing.

    I just glad they finally figured me out. 

    More interested learning from Liz as really struggling with shock of having CP.

  • Richard_ScopeRichard_Scope Community Team Posts: 2,587 Scope community team
    edited February 8
    Hi @RichardLel
    I'm really glad you decided to join us on the community after our telephone conversation the other day. 
    Your comments about the state of mental health services when you have other conditions are true. For a large part of my life, my mental health issues were put down to my disability and left at that. Nothing could have been further from the truth. Medical professionals and society at large seem to really struggle to grasp that your mental health difficulties are not always as a direct result of a disability.
    In terms of your recent diagnosis, you need to give yourself time to process the information and the things we discussed over the telephone. It is an opportunity for you to understand why things have always been the way they have for you and now, armed with a diagnosis, you can start to find ways to make life a little easier. 
    We are here to try to support you through that process.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,134 Pioneering
    Hi @Richard_Scope
                                     Really interesting post and very true. I think it is a perception that if you are disabled this therefore causes any mental health issues you may have. In my opinion, this once again reinforces the idea that we are a disabled person as a whole rather than a person, who like everyone faces the highs and lows of life. but has a disability. Though some of my mental health issues relate to my CP such as deep feelings of guilt and shame, it is by no means the only reason. I have been blessed to have found someone who understands this though it has taken a lot of work and a long time to start to unravel this and is an ongoing process. I hope that this makes sense, thank you.
  • Richard_ScopeRichard_Scope Community Team Posts: 2,587 Scope community team
    It does make sense to me @WestHam06. I'm very glad that you have found somebody with a more inquisitive approach to your mental wellbeing. As you say though, it does take a lot of work to find people/therapists like that. Can I ask, and you don't have to answer, why the feelings of guilt?
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,134 Pioneering
    edited February 9
    It's just something I've always felt, that being disabled is my fault and it's a weight I have carried all my life. There are lots of contributing factors to this and slowly but surely I'm working through these. That is why I am so keen to raise awareness about CP, I don't want others to feel the same and to do so in silence for a long period of time as I did.  Thank you for asking. 
  • Richard_ScopeRichard_Scope Community Team Posts: 2,587 Scope community team
    I can kind of understand that feeling. Awareness is really important as it leads to self-acceptance over a period of time.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,134 Pioneering
    I find I'm much more accepting of my disability than I was which can only be a good thing :) Thank you.
  • 11190821119082 Member - under moderation Posts: 269 Courageous
    Yes accepting your disability is a very good to come to terms with 
  • RichardLelRichardLel Member Posts: 40 Courageous
    Responding to Richard_Scope comment about perception from other people. That being autistic that automatically assume I need a carer when I was last in hospital. Shock when they find out I was a professional carer for many years worked with patients to I burned out.

     I fell into the trap of confusion, dependent which pro talk to as autism professional or mental health professional. I was found in hospital by autism professional which pointed out the mistake. I lived this dual role which now retired but still medical volunteer, being both which make it challenging as already got the answer!

    Perceptions can differ greatly the neurotypical understanding and the autism understanding just wired different neurologically and got very good social worker who teaching me the differences, but not always seen.

    I struggle with the cp, that  wider community assume that able to do everything for years, but for me to do something I have to adapt my environment for me to function like in the home. I asked today adult services today to speed up the OT assessment of the home I need urgently as agree with WestHam06, that accepting who you are, that burned out trying to be able bodied and rather go my own way and be happy with CP, which neither could be able bodied in the first place!
  • RichardLelRichardLel Member Posts: 40 Courageous
    Just to add, that diagnosis has really helped my mental health and closure and just need to rest, and look forward, and that important thing in give it time! Thanks for comments and welcoming me to the online support group!
  • forgoodnesssakeforgoodnesssake Member Posts: 340 Pioneering
    Mental health and CP seems to be a very complex issue with many factors interacting; and very few professionals "up to speed" as it were about how that can affect someone.  It seems to be more recognised now that people with CP, and actually any brain injury, are more likely to have or develop things like anxiety and depression.  Yet there are still so few specialists in this, even within neuro rehab specialist settings.  There do seem to be definite links between injury to specific parts of the brain and emotional control issues as well as mood etc, and so that might explain some of it; but it can then be very hard to tease out whether there are also underlying confidence/embarrassment/frustration issues directly resulting from the physical impairment.  In our family situation for example, the person with CP would, I suspect, say that they have very few issues directly related to how they feel about their physical CP...but more about how they feel they are treated sometimes by others and how they then can fixate on that and get into a bit of an anxiety/anger/negative intrusive thoughts spiral.  But it is so complicated and there is so little really helpful support out there, and an awful lot that is inappropriate or unsuitable to say the least (ie talking therapies for people with language/communication impairments associated with their CP can simply be completely inaccessible to many)
  • BehiBehi Member Posts: 2 Listener
    edited February 23
    Hi guys,
    I want to tell my story if you have any suggestion I'm glad to hear it
    Since I was a kid, I drop things because of the weakness in my left hand, and to be honest, still, it is terrifying when I do things that require the work of 2 hands properly. (compare to my childhood I can grab things much better). But I feel these kinds of feeling, become over generalized and affect other parts of my life which at the beginning of every new project I feel, I can't do it so dramatically which I skip  or procrastinate it till the last moment (I have low self-esteem in practical stuff) 

    For 10  years I just haven't done any exercise for my condition, and I've started it for a couple of years but recently I figured out that a sense of failure is the biggest obstacle to my improvement

    If you were in my shoes what would you do? 

  • Richard_ScopeRichard_Scope Community Team Posts: 2,587 Scope community team
    Hi @Behi
    Everybody has some fear of failure I think. I know that I do. 
    I focus on the fact that what I'm doing, be that a job or exercise, is for me and the benefit of my family. It is not to prove anything to anybody.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,134 Pioneering
    Hi @Behi
                    How are you? Welcome to the community and thank you for joining us. Thank you also for sharing part of your story with us. I can empathise with what you say with regards to feeling a sense of failure, for many years I felt this and didn't express it to anyone which had an impact. After some time I decided to try to address this through the support of professional help which was really beneficial. Please may I  ask, what do you think may help you in dealing with this sense of feeling? I know writing things down help some people or for others it may be through creative means, hope this makes sense. Thank you. 
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