Cerebral Palsy
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CP and ageing

Topsy270Topsy270 Member Posts: 12 Connected
edited January 2020 in Cerebral Palsy
Hi I am nearly 42 have mild cp in my lower limbs.  I have worked all my adult life till 4 years ago I could no longer manage so was I'll health retired at 37. I fought all my working life to stay at work but in my 20s my disability was starting to have a big impact on my joints and my body.  I have been using walking aids since I was 28 years old . 

For me I am in constant pain in my legs ,back ,arms , feet and hands . If I take strong painkillers I get side effects so I choose to live with pain it gets me really down . I feel I lost a big part of my life having operations and recovering etc when all my friends were getting married having kids . I miss working every day but with chronic pain I can't sometimes i dont sleep and even when i do in am always tired   I did not realise that even with  mild cp it could impact on my body the way it does . There is no support for adults with cp just children near me . How do others cope ?

Replies

  • LouiseHLouiseH Member Posts: 96 Courageous
    Hi @Topsy270
    It sounds really difficult and some support could help things for you. 

    I'm wondering if the local children's support network may be able to help point you in the direction of any adult support? Could speaking to them guide you in the right direction? 

    Also, do you use social media at all? I've found Facebook has a few peer support groups in various areas, both online and in real life. There might be something on there, maybe a group page of people facing similar issues.

    Let us know how you get on :smile:
    Louise Hesketh
    Community Champion
  • Topsy270Topsy270 Member Posts: 12 Connected
    There is no support groups near me I have looked but thank you. As for Facebook i will keep looking thank you 
  • RegReg Member Posts: 26 Courageous
    Hello Topsy
    I have mild CP and retired early 4 years ago at 50 as could not sit for more than 10 mins without seizing up , after years of operations . Your post made me think of my sleepless nights and the years I hauled myself into work.

    Like you, I have been told that there are no specialist adult services for mild CP - there are if I had a stroke or MS - even though the medication and effects on the body are the same.

    That means my recent hip operation wasn’t overseen by a CP expert and the after operation physio was only scheduled to last 6 sessions but I got 8 . Now full time on a crutch as that works better for me than sticks.

    On retirement I got a small dog to try and keep me active and was lucky enough ,after a couple of years of retirement , to get some work that I can do from home. Home working means I can get up from my desk when I need to and keeps the brain active. Not sure if your earlier career would lend itself to part time home working ? There is also a very good free online open uni site that has some free courses that you can do from home.

    In my area there are disability social groups ( just not for CP) but I wondered if a general group would help you? 

    I know it is very frustrating to retire early and to have retired friends in their 70s and 80s speeding past you as you walk with them.

    Also it is very aggravating to be told you are too young to go on the fall prevention course though I fall over more than the retirees ! 

    Hope you are are able to find something either in your local area or online 

    Reg
  • Topsy270Topsy270 Member Posts: 12 Connected
    Thank you for your reply . O also remember the statin of dragging myself in to work on my crutches in pain and shattered .

    I can't sit either for long periods of time also some nights I don't sleep for pain so shattered the next day . 

    I have tried many jobs over the years and find not working better for me as I can pace my pain if this makes sence plus I am also not letting someone down when I have a bad day . I did work from home also for a bit .


    Your right about support for ms but not cerebral palsy I rely heavily on massage therapy for my pain and there is no support but private . Thanks again for your reply I will think about a course online  take care
  • jadealyssajadealyssa Member Posts: 63 Courageous
    Hi @Topsy270
    Although it's again not the same  but my son suffers with CP also and although he does receive alot of support there is some information you may find helpful although you probably are aware.
    His physio recommended horse riding, there are specialist centres that cater for those with disabilities. But apparently the way the horse moves helps to build your core muscles and strengthen them. There have been cases proven of those with CP who couldn't sit up unaided that after several session being able to then sit on the horse unaided. And eases pain also. Maybe you could look into that.
    Also they recommended swimming (hydrotherapy) which also is well known to help ease pain and help the muscles relax
    I hope this can be of some help 
    Best wishes 
    Jade
  • Topsy270Topsy270 Member Posts: 12 Connected
    Thank you for your reply I go swimming once a week have not for a few weeks due to pain . I do need to improve my core muscles trying with exercises. 
  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    edited January 2020
    Hi @Topsy270
    I'm not sure if we have spoken before but I can relate to some of what you have described. I'm 42 and 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. I would strongly suggest that you speak to your G.P. about this and ask for a referral to a neuro-physiotherapist. 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.

    You are most certainly not alone in this. If you would like to talk more, drop me an email or find me on the community.
    Sorry for such a long response :)
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • jadealyssajadealyssa Member Posts: 63 Courageous
    edited January 2020
    Hi @Richard_Scope
    Thank you for your response there, very interesting.
    My son suffers with asymmetric dipleiga CP and although he is very mobile he finds walking after short periods of time very exhausting, he has many falls and get fatigued very easily. Do you find you fatigue easily? and any tips on how to deal with his fatigue?
     We are currently waiting for a referral to wheelchair services for a special adapted pushchair so we can use this while we are out if he is tiered. A walking frame was considered but his physio felt it would hinder him. 
    He had piedrio boots and night splints to try and help him stay as mobile as possible. But as I said he falls alot due to him not being able to lift his leg enough to clear the floor.
    Sorry for the long post, interesting to hear your perspective 
    Best wishes 
  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    People with CP do experience fatigue due to the amount of energy we use to perform basic movements. Some research suggests it is 3 times more than non-CP people.
    The way that I have tried to deal with it is by slowly increasing my stamina by swimming and gentle but sustained exercise. Listening to your body is also very important. Knowing when to slow down and take a break. As your son is so young, you will have to monitor if he is overdoing it. 
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • jadealyssajadealyssa Member Posts: 63 Courageous
    @Richard_Scope
    Thank you  :)
    Yeah his not far off 3 now so as you can imagine his very energetic and wants to do everything he sees other children doing however it's hard trying to slow him down and explain to him he needs to give his body rest. The one thing I've always believe and I think everyone should think similarly is that I never tell him he can't do something because of his CP I always want him to know if he feels he can do it then he should do it and that he should let it hold him back if physically his fine enough to do so.
    Thank you for your comments very helpful 
    Best wishes 
  • Topsy270Topsy270 Member Posts: 12 Connected
    I have been to my gp an number of times asking for help and support there is nothing they can do anymore if I get physio its short term and i am just left to get in with it 
  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    Your G.P. is simply not doing their job. I know it's tiring to keep battling with medical professionals but it will be worth it in the long run. Have you looked at the information I included in my first reply to you? Have you been tested for Fibromyalgia? Or referred to a pain clinic?
    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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