Cerebral Palsy
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Aging with CP... suggestions needed

L_CookL_Cook Member Posts: 3 Listener
Hello,
Apologies if this is the wrong place to ask. I'm new here. The wealth of information is a bit overwhelming and I can't see the wood for the trees. So it's a bit of an essay but here goes...
I'm 42. I used to say I had mild CP, but seriously... the pain, constantly throwing coffee everywhere (spasms), having to repeat myself at least three times before getting a sympathic nod and ignored, the weird looks when I trip over nothing and the general inconvenience at times, I don't think it's mild CP. I think I used to say mild as I was embarrassed, but now I'm older, I don't care. And if you don't like wearing my coffee, don't sit so close, obviously!!
Anyway... at 42, things are getting a bit tougher. Covid hasn't helped as I haven't accessed the gym as much. And now it hurts too much to face going back to the gym. I will... next week.  Everything is stiffer. I get tired quicker.
I haven't hadn't had any real medical input in regards to my CP in years. I had physio a few years back where I was told I probably have arthritis in my hips but that wasn't investigated. I don't tend to go to the GP often as I haven't got a lot of faith in them. To name a few instances... I've been asked if my CP was a long term condition; they assumed my (now ex) husband was disabled, he wasn't disabled unless being a total **** is now a disability; and every time I see the GP now they do a stroke assessment as my right side is weaker than my left. My physio suggested I ask GP for a neurology referral, but GP didnt think it was beneficial. I'm currently taking a low dose of Baclofen, but it's not really helping. The GP doesn't want to increase the dosage.
I am independent, I work full time, I'm a single mum to two wonderful teenage boys, I don't have any social care and I hate asking for help. My worry is I can feel myself getting older quicker and I don't want to lose my independence any time soon. I'm of the mind that prevention is better than cure but I don't know who to go to or what question to ask. Any guidance??

Replies

  • Welshjayne2021Welshjayne2021 Member Posts: 81 Courageous
    Hi. I am @Welshjayne2021.  I too have mild CP and boy, do I recognise your story.  I am now in my 60s but it is only the last 10-15 years I noticed were more difficult.  It is down to this forum, I found out about Post Impairment Syndrome which a nutshell is what have described.  I am sure there are plenty on this forum that give you advice.  For myself like you I have little faith in Doctors, I just manage my symptoms as they present.  Every day is different, and some days are more painful than others.  I do not to Baclofen yet, but have not ruled anything out.  I think the most important thing is to keep control of what happens going forward, listen to your body and do what’s right for you.   Nice to meet you and take care.
  • L_CookL_Cook Member Posts: 3 Listener
    Thank you @Welshjayne2021. I try to listen to my body, but it's a bit one sided. She's a miserable mare and won't do what I want her to  :smiley:
  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    edited May 5
    Hello @L_Cook

    I can relate to some of what you have described. I live with quadriplegic CP, I use a wheelchair and have done for the majority of my life. Having said that, my mobility has certainly changed noticeably.  
     
    The ageing process for people with CP starts earlier than for those without CP. As people with CP move through adulthood, they will experience premature or accelerated ageing because of the primary motor control impairments which reduce gait and movement efficiency, leading to overuse of muscles and increasing the expenditure of energy and causes fatigue. Research has suggested that adults with CP experience pain as they age due to how they perform an activity and routine movements. The research suggests that the painful experiences are often related to soft tissue injuries in muscles, tendons, ligaments or nerves.  
     
    From reading your post it sounds to me that you may have Post Impairment Syndrome. The syndrome is fairly common amongst adults with CP.  We have a really insightful piece about Post Impairment Syndrome, written by Ruth Murran. What Post-Impairment Syndrome has meant for Me and we have the Things You Have Found Useful for Managing Your CP thread that has lots of tips from people with lived experience. 
     
    There are things that you can do to help manage the changes in your mobility and pain. It sounds counter-intuitive, but exercise is very beneficial. Especially, low impact exercise like swimming. Any kind of movement at whatever level you can manage. Cutting down on caffeine and staying hydrated.


    Ageing with CP is a new challenge for sure. 

    Us CP folk use up a lot more energy than non-CP people, up to 5 times more because of the way we move or walk etc, this can lead to fatigue. Don't forget as well that being a parent is also exhausting at times, it is for me and many others here in the community. 
     
    The key is learning about your body and planning your day around that as much as you can. Plan the bigger tasks at the time you have the most energy etc. Whilst the neurological aspect of CP doesn't change, the physical aspect certainly does. 


    I know you are not impressed with your G.P. but what I would advise is that you go back to them (telephone appointments will work too) and talk to them about changes in your lived experience because it may not be your CP and it's important to be healthy in all aspects of our lives. You can also talk about how your CP has changed. Speak to them getting a referral to a neurologist or neuro-physiotherapist at a specialist centre like Adult Cerebral Palsy at UCLH You can mention the CP Care Pathway which instructs G.P.s how and when to refer. Your G.P. cannot refuse to refer you and if they do you must complain.
     
    I'm pretty much always around if you would like to talk further. We're here to support one another. Don't feel alone. 

     

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Welshjayne2021Welshjayne2021 Member Posts: 81 Courageous
    Hi @L Cook I recognise the “miserable mare”.  But I should also add that it helps to have a sense of humour, which I can hear you already have.  I see that @Richard_Scope has responded to you.  That’s good, he has a wealth of knowledge and advice.  Chin up....
  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    I think a sense of humour is a necessity, @Welshjayne2021. Especially when you fall as much as I do! :smiley:
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • L_CookL_Cook Member Posts: 3 Listener
    Thank you @Richard_Scope. Those articles are really helpful. I shall go back to my GP armed with some knowledge. 

    I'm not sure about cutting the caffeine though... unless I can replace with wine 🍷 
  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    If I can help, let me know. I think wine is a sensible replacement  ;)
    Scope
    Specialist Information Officer - Cerebral Palsy

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