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I've just been diagnosed with spastic cerebral palsy at age 21, I need guidance and support

mhewartsonmhewartson Posts: 5Member Listener
edited October 2016 in Cerebral Palsy
My name is melissa and i just need some guidance and support. 
Ive just been diagnosed with spastic cerebral palsy at 21 and am struggling to come to terms with what ive been told.
I have had to come out of work due to the severe pain in my hips and legs. And i dont even know where to start with any sort of disability money or aids that i can get.
Ive lived with a stiff leg and a foot that doesnt move and an arm that doesnt do anything as i struggle to pick up day to day items and this has been for all my life.
My mother told me i didnt get any oxygen when i was born as i wasnt breathing and yet still wasnt diagnosed in my early years.
My partner suffers from his own illnesses and i feel he doesnt understand and he gets frustrated when im in pain because he has no idea what to do. 
Im struggling and any advice would be greatly appreciated.
Everything i read online points to children, i need advice on where to go from here.
I am awaiting a brain scan to see what that shows. 
Please if anyone can point me in the right direction it would be appreciated seen as though i feel like ive been given a life sentence.

Many thanks in advance

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Replies

  • Chris_ScopeChris_Scope Posts: 695Member Pioneering
    Hi Melissa, welcome to the community, I hope you find that it provides the support you're looking for right now.

    I'm sure members of our community will be along soon to give you some guidance, but if you've not seen it yet you might like to take a look at Scope's information pages on cerebral palsy, and also the discussions on physical impairments and cerebral palsy here on the online community.
  • bambam Posts: 331Member Pioneering
    Hello Melissa I am just so so so sorry about your diagnosis and your problems. My heart really goes out to you
  • BillFBillF Posts: 7Member Listener
    Hi Melissa, welcome. I also feel for you and hope things work out. Stay strong and have faith that things will sort themselves out. 
  • StayceStayce Posts: 274Member Pioneering
    Hi Melissa 
    I know it is really hard right now finding out about your diagnosis, I don't think there is ever a good time for it. It's a lot to take in. But remember you are still you regardless of the label. Don't lose sight that there are ways to manage Cerebral Palsy. There is a great support here within the community so use it as a sounding board for any questions you may have - no matter what they are.

    You are right the resources are very child centred and the adult literature is hard to come by and is primarily all about aging (which is not really what you are after right now)

    In terms of guidance I am assuming you are under a Neurologist given that you mention awaiting the brain scan. If so I would really talk to them, tell them how you feel -they are usually very sensitive towards these things (mine certainly is). I would ask them to refer you for both physiotherapy and occupational therapy as these will be crucial to you and a great provision of support in the coming months as you come to terms with the diagnosis. I would also ask your GP to refer you to an orthotist (for the hip and foot pain)

    As you mention you have come out of work - Are you still employed and off sick? or left employment?. If you are in work but currently off sick, look into Access to Work. If you have left work try and get in touch with  your local job centre and ask to make an appointment with their Disability Advisor.

    I hope this helps to start with. I think it's important to set small goals at first so that you feel you are making progress as you come to terms with it - and you will. Stay strong :)

    Best wishes


  • mhewartsonmhewartson Posts: 5Member Listener
    Thankyou, you have helped a lot.
    Ive been trying to cime to terns with it but nothing seems to help.

    I am still employed but on long term sick at the moment so unsure of where to go.

    I will be certain to check out the things you mentioned as it is my hip and foot giving me hell.

    Baby steps is the way to go! Thankyou so much. X
  • StayceStayce Posts: 274Member Pioneering
    edited October 2016
    Hi Melissa,

    Glad I could help. This may help in terms of coming to terms with your diagnosis and that nothing seems to help. It will take time, but try to keep things as normal as possible- meet up with some friends or family (nothing too extravagant as you are off sick from work :), It's important to do things you would always do, you need to build a support network for yourself of people you trust to talk about your Cerebral Palsy as you may find it hard to physically talk about it at first, but it will come with time and practice 

    I would get what you can from internet sources about the condition as its good to know what you can and be informed about it as much as possible, but don't over do it - sometimes looking at this stuff can make you more stressed and upset about it. You will learn what your body can handle etc for yourself 

     Have you thought about trying alternative therapies to help you cope with the news of the diagnosis? - nothing too heavy - going for a massage, seeing an osteopath, Alexander Technique lessons that sort of thing? All these sorts of things really help not only with the stiffness you mention but they help clear the mind and relax you so you can manage the stressful situation which you are in right now. I find these help me, anyway, just a thought.

    When you see your Neurologist -ask about their vocational rehabilitation service - this is usually a team where you will get to see an occupational therapist and clinical psychologist about your needs re-entering employment. This will help you identify what support you will need when you do return to work and also give you an idea of the sort of support that maybe available via Access to Work. You can find out more here about access to work https://www.gov.uk/access-to-work/ 

    I hope this helps. You will get there. :)

    Best wishes


  • mhewartsonmhewartson Posts: 5Member Listener
    Thanks stayce. Youve been lovely.
    Yeah im going to take my neice for a gentle stroll tomorrow.
    My GP has referred me to physio so il see where that gets me..
    And lets be honest we all love a massage.
    Im so glad i got to speak to you as before i just felt completely alone, i woyld even go as far as depressed. Your advice means a lot.
    My area manager is on her hols at the moment so i will have to sit down with her and try and come up with a plan. Being a catering supervisor takes its toll 10hours a day. Many days without having time to even sit as you are in a understaffed busy residential area.

    I appreciate that you have made me feel welcome and not alone and i need a support network around me at this time.
    Could you shed any light on pain relief at nights(natural) and what is this physio therapist going to do to me!!
    Many thanks lovely Xx

  • StayceStayce Posts: 274Member Pioneering
    edited October 2016
    Hi Melissa 
    Glad I could help. It's important that we all help each other where we can.

    The physiotherapist will go through your symptoms with you and  assess your range of movement, pain levels, flexibility, muscle tightness, coordination, balance. They will then most probably use a range of manual stretching techniques to relieve your tightness. You will most likely lie down while they do this to you. Some physiotherapists use other techniques like accupuncture, TENs machines or ultrasound. They will then definitely give you homework to do - exercises that will help you stretch or strengthen weak areas so you will come away with an exercise sheet. I would ask the physio whether they have experience of working with Cerebral Palsy because if you want to learn about the condition you really want someone who has treated people with the condition before as you don't want to  both be learning together for the first time at the moment.

    In terms of pain relief at night that is natural. These are my top picks :)

    1. Take a hot bath before bed and add either Epsom salts  (you can buy this on Amazon) or arnica oil ( you can buy this in boots or Amazon)
    2. I would then apply ceteum gel (this is a natural cold treatment that you can buy from http://www.myoproducts.co.uk using PayPal)
    3. I would think about taking Glucosomine tablets (this is a natural supplement that will help with joint pain)
    4. I also use Acu-med patches. They are like small plasters with magnets in you basically stick them on your skin wear your pain is most.

    @Noah
    @Noah started a really good discussion thread that you might also find useful (some of these are natural some are not) 
    https://community.scope.org.uk/discussion/28690/things-that-you-have-found-helpful-for-managing-your-cp#latest

    When you speak to your area manager. Think about what you want to get out of the meeting and have a think about what you think might help you to return to work (when you are ready) From what you say you might want to discuss a phased return to work ( working gradually up to your full hours), securing regular breaks which are protected for you, equipment that would help you - maybe a catering stool that would allow you to take some of the weight off your feet/legs.

    Hope this helps. Enjoy spending some time with your niece tomorrow.  

    Best wishes
  • mhewartsonmhewartson Posts: 5Member Listener
    Hi stayce.
    As ive already said im fortunate for your advice. 
    I will be certain to discuss everything we have talked about to the therapist and my manager.

    I dont know what the future holds work wise but do need to fin out where i can go from here.
      
    Had my neice today shes only 6 weeks old so seeing her and speaking to you , i feel like i no longer have a life sentence. It can be managed.

    Oh man! I wish i had a bath but i dont just a shower but my gp gave me naproxen which had helped alot!! 
    Am i ok to save these messages just to keep track of the things i need to ask the therapust ad my manager??

    Sending love
  • StayceStayce Posts: 274Member Pioneering
    edited October 2016
    Hi Melissa,
    So glad that you are feeling better in yourself and able to manage. You will get there.

    Glad you had a lovely time with your niece that is the sort of thing you need to be doing right now - keeping things as normal as is possible. 

    The messages will always be on the scope community for reference, but if saving them is helpful to you to get the most out of your up and coming discussions then do so. ☺.

    Regarding the bath- have you got a relative or friend you could go to for one? That's what I did when my bathtoom was re-fitted as my hips were so stiff without a hot bath- it can make a big difference especially for rehabilitation purposes 

    Alternatively, epsom salts basically contains magnesium  You can buy a magnisium spray in Holland and Barrett which you can just spray where it is painful. Although, I would check with your GP as to whether you can use it at same time as the naproxen as you might not be able to.

    Hope this helps.

    Let us know how you get on with your appointments

    Best wishes
  • StayceStayce Posts: 274Member Pioneering
    Hi Melissa 

    How is it going? How did you get on with your appointments? Did you talk things through with work?
    Just checking in to see how things are going:)

    Best wishes 
  • mhewartsonmhewartson Posts: 5Member Listener
    Hiya hun, 
    Got some appointments, 
    Was speaking to work this morning about a phased return, so maybe i can get back to that in the new year.
    My meds have been upped so feeling really drowsy all the time, just have to keep persevering with it until i manage to get back on track fully.
    I think it has now sank in that i do have this condition and learning to live with it, one day at a time.
    Thanks for your concern xx

  • InformationSupportWorkerInformationSupportWorker Posts: 15Member Connected

    Hello Melissa

    It's good to see all the support you have been getting through the community.

    I am an Information and Advice Worker at Scope and I work with disabled people and their families  in the London area. There is a team of us around the country and we have  knowledge and experience about cerebral palsy. If someone is newly diagnosed then usually we can offer a home visit to discuss further the support you may be looking for otherwise we can do this on the phone.

    Could you let me know which part of the country you are in and I can let you know who is covering that area. My email address is [email protected]

    With very best wishes

    Vicky


    I


  • StayceStayce Posts: 274Member Pioneering
    edited December 2016
    Hi Melissa 

    Glad to hear that you are feeling that you are getting to grips with the condition - one day at a time is a good approach to have. Great news that you are talking with your employer about a phased return to work, possibly in the new year. :)

    Sorry to hear about the drowsiness the meds are causing be sure to mention this to your consultant/specialist/ GP as perhaps the dosage needs looking at or something else might suit you better particularly if the plan is for you to take it long term.

    You know where I am if you need to chat things over ;)

    Best wishes
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