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Cerebral Palsy & Mental Heath

dizzydingbatdizzydingbat Member Posts: 7 Listener
edited February 2015 in Disabled people
Hi I'm Becks, a 25 year old with Cerebral Palsy/Dyplegia, Crohn's Disease and NG bladder syndrome. My physical state has somewhat declined over the past year and so I've had lots of different appointments with various people that specialise in various fields.

I'm finding myself getting more and more frustrated because most of my ailments are interconnected and there is a serious lack of communication between specialists which has resulted in me being prescribed tablets that I can't take, wrong diagnosis, even hospital stays..

It doesn't help that obviously my notes aren't being read properly.

In the past I've been so down in the dumps because I'm fighting a losing battle, so much so that I've attempted to "vacate the building" but I'm happy to say that I've regained some positivity but I can't be alone in these frustrations, can I?

Replies

  • nicebootsniceboots Member Posts: 196 Pioneering
    Hi, I'm 28 and have diplegia cp.
    Believe me, you're not alone in your frustrations!!!!
    Over the past 5 years or so I have found the affects of my cp are having a bigger impact on my life. I used to be a lot more active than I am now, I used to cycle everywhere, take my dogs for walks and do all sorts of outdoor activities that I can no longer do.
    As I have gradually become 'less able', I've had ups and downs in my mood, especially on 'bad cp days' where I'm tight and achy, and my body doesn't seem to want to do the simplest of tasks. I hit rock bottom when I had to sell my mountain bike about 3 years ago as I kept falling off, and it was becoming dangerous. If it wasn't for my friends and my natural strength of mind, I would have given up altogether. I used to drink a lot to get me through those times (believe me, it's totally not the answer!) as I was so frustrated feeling that no one was listening to me, that's if I was lucky enough to get an appointment....

    I'm glad to say that things are more positive now, I've been taking baclofen for nearly two years, that makes me more comfortable.... And I've got my head around not being able to do the more physical things I used to and have made several positive changes to my lifestyle, including going tea total and filling my spare time with doing voluntary work. This has not only helped me both mentally and physically, I am building up my CV, so I can make a career change to something more suitable.
  • redchicken43redchicken43 Member Posts: 48 Pioneering
    Its probably fair to say that the ageing effect on people with CP is somewhat of a mystery to most doctors and I think this is down to the fact that most are not specialists in the field and the simple fact that everybody's CP is different. The sad reality is that when we get older things start to go wrong and we may not be able to do those things that we once did, but this could equally said about abled bodied people as well. I have found that its really about a state of mind and focusing upon things that we can do rather than looking backwards. Perhaps the way to look at it is that there is always somebody who is worse of than you and your help and advice could well turn out to be invaluable to people on this forum.
  • NoahNoah Member Posts: 430 Pioneering
    edited December 2014
    Hi Becks,

    You are defiantly not alone with the things you describe, It is highly frustrating when doctors don't seem to communicate with each other.

    One possible suggestion is. you are entitled to see your medical notes. And every time a report is written, you are allowed to have a copy. Maybe by requesting copies of everything, and keeping a file that you can take to your medical appointments will help? Doctors like to see patients that have a very active role in their care and what they want to achieve each time to have an appointment. Do research on everything, which is made easier with the internet etc. And take your research along. Yes, doctors are highly skilled, and well trained in their area. But don't forget you are the one that understands your own body the best. I find it helpful to always write some notes in preparation for every appointment. Normally under the headings, What do I want to achieve? Main areas of concern? And questions I need to ask?

    Really hope you find something that works for you, you will. Make use of the forum to ask questions anytime you want, and keep us posted.
  • dizzydingbatdizzydingbat Member Posts: 7 Listener
    Thank you for your advice everyone, it's unbelievably comforting to know that there are other people like me that feel the same or that are experiencing similar situations.

    I'm finding it mega tough accepting that I can't do some of the things I used to, but I've now decided that in order to improve my quality of life, I have to accept extra help, advice and most of all, keep busy.

    Noah, I'm having such a hard time getting hold of my medical notes, I don't understand why they make it so difficult. Do you know where I could get some advice on this or where I could go for support?
    Thank you in advance.

  • NoahNoah Member Posts: 430 Pioneering
    edited December 2014
    Every hospital should have a patient liaison service, which will be able to help you obtain your notes. Maybe look on the hospital website for the contact details. Every time you go for a consultation ask that a copy of the report gets sent to your home address for your records.

    Accepting help, will make you a stronger person, its not at easy to do. But hopefully it will enable you to do more and improve your quality of life.

    I read your other post, it sounds like so far you have defeated the odds, fought hard, and proved the medical professionals wrong. You should be very proud of yourself.

    All the very best
  • alex_2014alex_2014 Member Posts: 6 Listener
    I also have Cerebral Palsy (Spastic Dyplegia), and some years ago, in my late teens, I went back to hospital, to continue my condition specific moves, to help improve the flexibility of my legs, and they claimed to have lost my notes. I then went back years later, and they had found them again, and I had my appointments with the hospital. It made feel like, well if they can't be bothered to help me, then why should I carry on with it. Well I then saw a health professional, while I was on a course, some years later, and she was more willing to help me, and my mood lifted, and I started doing them again, but not as often as I should. I also attend the gym on a regular basis, and that really helps my legs as well.

    So I can understand partly where you are coming from, based on my experience, so I wish you a good future, and no doubt there will be more things you will achieve. I hope you also get all the advice you need. :-)
  • the_in_vis_able_methe_in_vis_able_me Member Posts: 5 Listener
    edited January 2015
    Hello Becks,

    I just wanted to underline that you are not alone. I was about your age when a doctor first told me I had CP (from infancy) by replying to some questions I had that "That will be the cerebral palsy". (It is a very long story). It was only weeks ago I had it in writing with any degree of explanation over symptoms. I'm 36 this month and steroid treatment for a worsening asthma resulted in other complications, yet it took me putting my foot down to get an appointment with a neurologist after months wasted on routine blood tests, to get to the root of the problem. I was working with people with severe CP at 24 when I was first told that I had it. It did not seem real in comparison with what those I was working with were suffering. It is only now I discover how real it is and how it can affect life and health in so many ways. Not all these ways are bad. I think many of us have a lot of tenacity and empathy because of what we go through. I am learning to recognize this in myself and I see it in you and others who have commented! These are qualities to be valued.

    When I was younger I managed some rock climbing. The views seemed more breath-taking for the challenges of the journey up the rock-face. That analogy still helps me, years after my rock scrambles. Those who are fully able bodied may have less trouble doing things but it does not necessarily mean that they notice or appreciate life. So, please don't vacate the building, fill it up and demand all the help you need to live to your own full capacity. I know you deserve it. I know you are not alone.

    This is the first comment I have posted and I am still very much finding my own way, but your words touched me so I wanted to write back.

    Take Care,

    The InvisABLE me
  • NoahNoah Member Posts: 430 Pioneering
    Hi Becks,

    Just wondered how things are going? Have you managed to get some of the answers you are looking for?

    Noah
  • the_in_vis_able_methe_in_vis_able_me Member Posts: 5 Listener
    I'd love to know how you are doing too, Becks
  • KatDunnKatDunn Member Posts: 5 Listener
    Hi Becks,

    I'm Kat, I work as an Information Officer for Mind, the mental health charity, and I'm currently doing a Q&A over here: https://community.scope.org.uk/discussion/27452/ask-about-mental-health#Comment_74051

    I was pointed in the direction of your post, and I wanted to offer some information that could be useful. It sounds like you've been having a really frustrating and difficult time recently, but I'm glad you've been more positive recently. We've got lots of tips and ideas about how to improve and maintain your mental wellbeing on our website here: http://bit.ly/1tQUIJC which you might find helpful to take a look at.

    Our network of local Minds offer all sorts of services and support, like counseling, activities or support groups to keep you feeling mentally healthy. You can contact our Infoline on 0300 123 3393/[email protected]/text 86463 9am-6pm on weekdays, and our team can help you find out what support might be available. We also have an online community Elefriends http://elefriends.org.uk/ full of people who understand how you're feeling and try to give each other support.

    If you do start feeling very down again, you might want to take a look at our information on how to cope with suicidal feelings here: http://bit.ly/1wZ6VGl And remember, if you need someone to talk to, the Samaritans are always there to listen to anything that's upsetting you, any time of night or day. You can call them on 0845 90 90 90/[email protected] and they'll always be there to listen and support you.

    Take care,
    Kat
  • dizzydingbatdizzydingbat Member Posts: 7 Listener
    Hi everyone,

    Just popped in to give you an update on things:

    I'm now in contact with a lovely lady from the liaison service who is now on board with my concerns and frustrations regarding my notes.

    The transfer of paper notes on to PCs has meant that my notes have become split. We seem to be tracking them down slowly and I'm ever so grateful to have someone fighting my corner.

    Take care.
  • NoahNoah Member Posts: 430 Pioneering
    That's excellent news. Thanks for sharing that with us Becks. Wish all the very best :-)
  • ASIFASIF Member Posts: 3 Listener
    hi Becks definitely you are not alone our prayers and cooperation is with you that's why we all are here to learn and share with others so as to extend the benefit and enhanced the knowledge.your experiences are vital and important which should be given attention and addressed properly.
  • YureiYurei Member Posts: 8 Listener
    I know I'm grave-digging this somewhat but I am 25 & have Cerebral Palsy (Spastic Dyplegia) and I went through a considerable 'dark patch' a few years back after spending less and less time on crutches and more in my chair or sitting out of activities I used to do with ease.  That coupled with my friends mostly having moved away due to uni made me feel like everything (including me) where falling apart.  

    Previously I would have 'down days' but I would always say to myself "people have it worse then you snap out of it" or focus on helping other people with their issues (I am considered THE guy to go to for advise)  and I would manage to pull myself out of it quickly but during that time in my life in private I was really struggling.  

    Thankfully a close friend caught on and she managed to force my feelings out of me to talk about them (which was and still is like getting blood from a stone) and really helped me out, I owe her a lot for that.  

    I still have days of frustration but now I try to focus more on what I can do or how to go about doing something then focusing on not being able.  And if I ever find myself remotely close to feeling down I'm sworn to call my friend and talk about it.  So in short you are in no way alone in this.
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