Cerebral Palsy
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Just been diagnosed with mild CP at 44!!

Charl73Charl73 Member Posts: 30 Courageous
edited March 2017 in Cerebral Palsy
I'm 44 and have just been diagnosed with mild CP! Where do I start.....I always knew I was different. Kids at school weren't pleasant, calling me names. I hated doing PE too. 

Once I was working, I was also questioned on 'my walk' and was also asked by a manager if the reason I wasn't as quick as others at work (desk job) because of my disability! I went mad and said 'what do you mean? I don't have a disability!' She replied 'your leg, your limp!' I went mad replying 'I don't type with my feet and there's nothing wrong with me!' Similar assumptions and my replies went on for most of my life.  I feel like I've been living telling lies.  I also feel I would've lead my life differently if I'd known :-(

I was born breach and believe I didn't breathe for 20 mins.  I didn't make any noises until I was 10 days old.  I didn't walk until I was 2 and had to be propped up with cushions to sit up.  (I may ask my parents to write more about my earlier years later).

As I said I always thought there was something different about me esp the right hand side.  When I think back, even over the last 10 years, I occasionally had falls at home for no apparent reason, I could never catch myself, if that makes sense, I would just go down with a thump.  I've been always conscious of my walk and balance, even more so as I've got older. I'm extremely clumsy and struggle to carry drinks or lift things like a full cup of tea/coffee with my right hand.  My right hand can become extremely stiff and ridged as does my leg, sometimes it can hurt to write as my hand is so stiff, my leg can feel like I have cramp.  It's very hard to described! I don't like going down stairs unless I can hold onto something and this is the same with gaps i.e. getting on/off trains.  I struggle if I have to standstill for sometime unless I've got something to lean on otherwise I have the feeling I'm going to fall.  I've also always been tired, yes I can go to bed late sometimes but so do others but I struggle to get up and can feel like a zombie, heavy body feeling.

I've always gone to the docs for the tiredness, had blood tests which were fine but I'm lacking in Vit D, which I now see is a symptom of CP!?!

I went to my new docs a couple of years ago, when I moved, I broke down and explained how I was feeling especially with my balance and legs. She was lovely and suggested physio.  No docs had ever suggested this before! I went to physio and again broke down, the physiotherapist listened and said that she wanted to speak to a more senior physiotherapist within the neurological/rehabilitation physio part of the hospital.  I thought nothing of this and they wanted to see me, I did feel abit silly as other patients there were in wheelchairs or had noticeable disabilities i.e. Strokes etc.  However, they listened to me and I went to them for quite a while, this really helped.  I was discharged but given the option to contact them at any time.  They did suggest some medication Beclofen which would help with my tone.  I got the prescription but the pharmacist said that I couldn't drive or drink alcohol while taking them!! So I went back to see my docs who got me the physio to talk to her about it.  She said it's such a small dose that I'd be taking so it'll be no problem.  I asked more questions as to what it's for etc.  This is when I was hit with the words 'palsy, it's what's known as mild cerebral palsy'. At last I thought someone has finally said I have a condition, that's all I've ever wanted is to know what and why I feel like I do. I left feeling pleased in a funny sort of way but then that soon wore of and realisation hit me like a big brick.  I've read up about CP and all the symptoms are me!!

I'm feeling angry, upset as to why I wasn't told this earlier. I really don't know what to do :-( My Mum and Dad are feeling very guilty that they didn't push for answers in my earlier years.

Sorry I've rambled on; I could keep going!

I understand from reading other posts that this is common to be diagnosed later in life! Would like to hear from others in a similar situation please, any help, guidance?

Thank you for taking the time to read this.

Charlotte

Replies

  • Chris_AlumniChris_Alumni Scope alumni Posts: 695 Pioneering
    Hi @charl73, welcome to the community, and thank you very much for sharing your story. I'm sure there are many who have experienced similar things, and can offer advice. You might also like to check out our cerebral palsy information page, and this  discussion on 'things that you have found helpful for managing your cp' has been very popular.
  • StayceStayce Member Posts: 398 Pioneering
    edited March 2017
    Hi @Charl73
    Welcome to the community - Great to have you on board. The diagnosis will certainly take some time to get your head round, but it sounds like you have had some great input recently from Physio etc.

    Don't be too hard on your parents I am sure they feel just the same as you right now and  with any disability a support network is crucially important  Take your time to digest the information and work through it one step at a time. You will get there. CP can be managed  - check out the thread @Chris_Scope suggests 

    The community is here to help with any of your questions so just ask however small.

     There are many here on the community who have acquired a diagnosis in adulthood. You might find this discussion of interest 

    https://community.scope.org.uk/discussion/30180/ive-just-been-diagnosed-with-spastic-cerebral-palsy-at-age-21-i-need-guidance-and-support

    Take care 
    Best wishes 
  • oldvicoldvic Member Posts: 2 Listener
    Hi
    I am the very proudest father of Charl73.
    We as a family are coming to terms with this late diagnosis. I know Charlotte is a strong willed lady, from day one 07/07/1973, when she popped into this world upside down she has been a little fighter.
    Her Mum & I were left very much in the dark regarding her condition, we were told she will grow out of it as she gets older, what IT was, was never explained to us. This will be for a different forum, unless of course there some other parents out there who's child has been diagnosed with the condition of Mild Cerebral Palsy in later years.
    Charl73 I love you. XXXXXXXX Dad
  • StayceStayce Member Posts: 398 Pioneering
    edited March 2017
    Hi @oldvic
    Welcome to the community- what a lovely message 

    There is a parents section on the community- I wonder whether part of this discussion could be moved there so that you could talk to some other parents who's child may have been diagnosed in adulthood.

    Also Scope provide a service where an information support worker can talk with you or your daughter about the condition and any questions you might have

    @Sam_Scope or @Chris_Scope can you help @oldvic


    Hope this helps
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Hi @Charl73 and @oldvic

    This must have come as a surprise to you all, I think when you are diagnosed with something later in life, you have to come to terms with it mentally and emotionally, as well as physically.

    @InformationSupportWorker can you offer any support or information?

    I am glad you have both joined the community, we have lots of lovely members with a ton of experience, so do jump in and get involved.  I hope you enjoy it here.
    Scope
    Senior online community officer
  • liayn85liayn85 Member Posts: 31 Connected
    edited March 2017
    Beautiful post! Welcome to the CP club.
    Yes, I read an article a month ago about a man being diagnosed with CP at 80. This is truly unfortunate for treatment, and is a result mainly of the "wait-and-see" method. 
    I hope you are doing okay. No one understands the fatigue, sluggishness, and zombie state that a CP person has to go through. Balance, strength, and coordination are things that we have to improve and maintain every day. 
    It sounds like you found a great medical team and regime, which is unusual for adult CP.
    I am also a mild right-side hemi dealing with falls, using my hand, etc. I was diagnosed at 10 mo though and born severe, Lately it has been rough, but I'm getting through it.
    Never knew about the Vitamin D deficiency! There are truly soooooo many random and astounding effects on our bodies. 
    Best of luck to you.
  • Charl73Charl73 Member Posts: 30 Courageous
    Thank you for all your comments, which is helping. All everyone keeps saying, you're still Charlotte! It's just extremely hard to understand why and I feel I would have coped with so many things differently if I'd known especially emotionally and the comments/assumptions I've had forever by people. I definitely don't blame my Mum and Dad, I feel just as bad for what they're feeling now as I do.  I also feel guilty for feeling like I do at the moment as I know how LUCKY I am as it could be worse! I've been to see an Osteopath this week, to see if they can help.  It started of with a lovely hot stone massage and acupuncture. Never ever did I think I'd being having that as I have a phobia of needles!! I've also been back to my doctors to try to understand everything but once again I broke down, was a bit of a mess. However the doc was extremely understanding, she said that 'we' i.e. Docs have let me down. She's referring me to a neurologist and for a MRI scan so they can properly diagnose me, she's also going to arrange for someone to talk to me about how I'm feeling (counsellor) ooooo I hate that word too, I'm not going mad ;-) 
  • Charl73Charl73 Member Posts: 30 Courageous

    Hi 

    I just wanted to update you on me, it helps me too to put everything down and also for some more suggestions/advise please!

    I had my appointment with a neurologist this week, OMG what a lovely lovely doctor he is, so understanding.  I was with him for ages, he confirmed that the probable diagnosis is CP with a few other long medical words.  There’s a couple of different medication I can try but I would be on them for life and they could have side effects; Baclofen or Trihexyphenidyl, which he said may only give minimal benefit.  He said that I seemed to have managed very well all my life and done everything I wanted to do, although admittedly sometimes with difficulty or clumsily.  Now don’t laugh but the other thing I could have is Botox!!!!  Lol, apparently it can relax the muscles but I’d have to have this every 3 months.  If anything this is the thing I’m considering.  Has anyone had this for mild CP?  He is sending me now for a MRI scan, hopefully to see where the damage is , although it might not show.  

    He has sent me a copy of his letter to my GP, which again was lovely, understanding and certainly left me feeling like I’m not wasting anyone’s time.  As this is what I sometimes have felt that this is a “silly”, I’m not drastically “bad”.  My GP also wrote to me this week, unfortunately, they are unable to locate my medical records from birth as they are destroyed after 25 years!!  However, again her letter was extremely understanding and I know that she would have tried.

    I’m still seeing an Osteopath, I had acupuncture this week with her, about 8 needles up my legs, in my toes!!!  I’m trying anything!!  Ideally, I don’t want to take medication, so if anyone has any more tips on alternatives/medication/treatments, please let me know.

    Thanks again for reading my rant (well not a rant as such) more me putting down how it’s going lol.  Any suggestions, doesn’t matter how little please let me know.

    Charl :-)

  • RegReg Member Posts: 26 Courageous
    Hello Charlotte,
    I was diagnosed at 21 as having mild CP , having grown up with what I was told were 'growing pains' - I could not understand why I never grew out of them or why I had to have 'special shoes' for growing pains. When I was diagnosed my parents felt they were at fault as the neurologist thought it was so obvious .

    I think a late diagnosis can be a good thing as I think my parents would have not let me grow up in the way I did ( climbing and falling ) if they had received the diagnosis earlier. We all still laugh at the fact that the school kept questioning me about home life and all my bruises - all because I could not walk in a straight path . I still veer off into sofas etc so break toes.

    I was offered baclofen and other drugs in my 20s and then managed to get off them in my 30s and then returned to using them in my 40s. Like you I have been offered Botox but my GP seems to think I should wait - he thinks more and more baclofen is the answer and while it works the side effects play havoc.

    If you can avoid baclofen and other drugs then I would - I am hoping to reduce (or even come off as still unrealistic in my expectations ) my baclofen as the side effects and tiredness can be as bad as the muscle spasms and the trips. 

    The main thing I wish I had known was the importance of keeping fit and flexible and keeping up with things like Pilates and yoga - I think they probably do as much to combat mild CP as the drugs.

    I am now 52 and have had to retire early as I could not cope with office work after 5 hand ops and a dodgy hip and sn increasing tendency to walk into things at work . I wish I had known that CP ,while not progressive ,does play havoc with your body so you shouldn't always push yourself but on the other hand get things done while you are in your 40s.

    Your original post about work made me smile as I spent my working life hiding a CP diagnosis and saying I did not limp - just had overdone it at the weekend and later blaming arthritis.

    In hindsight a diagnosis in my 40s might have been better! The positive is that you seem to be getting a lot of support and you have a great father !

    Sorry I can't answer your query about Botox - but hope the post puts a very positive spin on a late diagnosis.
  • Charl73Charl73 Member Posts: 30 Courageous
    Hi Reg

    Thank you so much for replying, it's so nice and reassuring to hear from someone with same condition as me, as I've felt that I'm the 'only one' sometimes! 

    Funny you should say about exercise, as I do Pilates once a week, I found a fab class and the instructor Beckie is so lovely, understanding and made me feel comfortable. She's recently been on a course about strengthening wrists, hips and knees, she said she has a few tips for me and is running a workshop about it in a couple of weeks.   

    Interesting hearing about the meds making you tired, as I'm already tired so don't think I'd cope with being more tired! I also find the more tired I am the more my balance goes, spill things and the awful feeling of I'm going to loose my balance and fall over! 

    I know what you mean about how I might be better being diagnosed now, I'm trying to tell myself that, but it's not easy sometimes. But on a BIG positive, I have to say my dad, mum and brother and rest of my family and friends I've chosen to tell, have been extremely supportive :-)

    Finally I do have to say your post made me chuckle with your earlier years lol, it would seem that us CP people have a great sense of humour lol ;-)

    Thanks again :-)
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