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Ageing with CP

BelleBelle Member Posts: 5 Connected
edited August 2016 in Disabled people
I would be very interested to hear from people with CP in the older age group.  I sometimes have big dips in confidence and feel a bit depressed but also feel I should have things sorted by now.  My CP is minor but impacts on my activity more than it used to.

Replies

  • Jane_ScopeJane_Scope Member Posts: 10 Listener

    Hello Belle

    although cp is not seen as progressive it can have an effect on the ageing process and exacerbate it so that sometimes activity/mobility can be sometimes harder than it might ordinarily have been.

    Scope have some information on their website about cp and ageing but if your cp is mild then it should not probably have such an effect on your ageing process as it might if it were more severe http://www.scope.org.uk/Support/Parents-and-Carers/Landing/Cerebral-palsy/Ageing

    I think that maybe with or without cp a dip in confidence can affect people as they age, particularly if illness is getting in the way of life or we feel we haven't achieved what we might have hoped for at a particular stage in our lives. I suppose trying to stay as active as is possible and keeping in touch with family and friends/ having shared activities and interests (and being kind to yourself), maybe all help to make life a little easier.  

    If mobility is becoming harder have you thought of maybe having some intermittent physio treatments, or maybe massage as a sort of maintenance/preventative measure (maybe you do this already), although you would probably have to pay for this yourself as opposed to GP referral (for physio), unless you had a specific problem (although it may be worth mentioning it?!).

    best wishes

    J

  • JackieJackie Member Posts: 24 Connected

    Hello There

    Have a look at the following website which is all about Living Positively With CP:

    https://healthunlocked.com/livingpositively

    I hope it offers something positive for you.

  • JackieJackie Member Posts: 24 Connected

    Hello There

    Have a look at the following website which is all about Living Positively With CP:

    https://healthunlocked.com/livingpositively

    I hope it offers something positive for you.

  • Poppy1Poppy1 Member Posts: 5 Listener
    Hello Belle, I've just written my first post about the effects of the aging process on my CP. I don't have any specific answers, I'm afraid. Like you, I'm looking for clarification.. I guess I started noticing changes in my ability to function around 30, after my second pregnancy. Now, I'm coping with the menopause. I don't think the changes taking place in our bodies are unique but they are exacerbated by our CP. I know it's not easy staying positive, especially when you are tired and in pain but learning to read the signs that make you feel low will help. It also helps me to remember that my mind is not always my best friend and I need to be more mindful of where I allow it to roam. It's easy to think about the negatives things in our lives but it's not always helpful. It's good to have targets, even little ones like, cleaning the kitchen or bathroom, cooking something new or doing a little exercise each day. Hope this makes some sense to you?
  • htlcyhtlcy Member Posts: 133 Pioneering
    Hi Belle, I too have noticed an increase in my CP symptoms as I've aged. My GP has explained that though the cause of CP won't worsen, the symptoms can because of the way your body has to compensate for loss of mobility, movements and energy use. Since I'm older and a lot more active, I've been seriously struggling with fatigue and pain a lot more than I used to. Baclofen helps with the pain aspect. It's very interesting to hear others have similar experiences: I think some people forget that a child with CP grows into an adult with CP and that sometimes symptoms can worsen over time though the cause of CP doesn't. 
  • the_velvet_girlthe_velvet_girl Member Posts: 103 Courageous
    I'm in my late twenties and already suffering from fatigue which my GP thinks may be caused by post impairment disease. I need to wait 9 months to see a neurologist to get formally diagnosed. I've just got a new job with part time hours which I hope will help and I'm considering getting a cleaner to try and reduce my fatigue.
  • Poppy1Poppy1 Member Posts: 5 Listener
    Getting a cleaner is a great idea. I had one when I worked and it really helped. :) I'm feeling a lot better at the moment. I've been keeping to my low fat, low sugar diet and drinking soya milk (supposed to help the symptoms of menopause). I'm eating more vegetables and upped my exercise regime. Only time will tell if all this works.
  • sassassassas Member Posts: 2 Listener
    I am 36 with cp and in last 9 years seem to have got worse dont no if this normal or not  feel very alone as no one understands 
  • Poppy1Poppy1 Member Posts: 5 Listener

    Hi, I'm sorry you are having such a hard time, Sassas. Your experience  is not unique and you are not alone. However, as you know, everyone living with CP has different levels of impairment and this will impact on our bodies in different ways; so it is hard to say what is 'normal'. Have you talked to your GP? In my experience, GP's don't seem to know a lot about CP in adults as it is labelled as a chronic, static condition. I was advised to take ibuprofen which did nothing to relieve my pain and I decided that pain killers were not the answer for me, I did not want to be dependent. However, there might be another reason for your symptoms so you might want to get a health check just in case they are not related to CP. Scope has some useful factsheets on ageing which you might have already read. However, if you still want answers, come back here, hopefully someone will be able to help. I hope this is useful. :)

  • BelleBelle Member Posts: 5 Connected
    I am now in my early 70's and have a good life with family, grandchildren etc so I know I am very blessed.
     The sort of situation that is difficult now is being wary of carrying youngsters around in case I lose balance and drop them! this means that I am not able to help out as much as I would like and I find this rather depressing sometimes.  Also have trouble carrying trays etc.
    This problem has definitely developed with age since I managed my children's babyhood OK.
    On the whole I manage to stay positive but am not at all sure about whether to go for more exercise or less or perhaps try different medication or prosthetics etc.
    The attitude when I was growing up was "don't make a fuss" so I don't talk about cp very often.
  • Nicky NicolaNicky Nicola Member Posts: 8 Connected
    You're wrong...  CP does have a huge impact on old age.

    In 2008 I met a spinal / neuro surgeon (Adrian Casey) which I see regularly and he said my symptoms and conditions he would expect to see in his older patients of over 70. I was 38 at the time. He said things will deteriorate dramatically over the years and quicker than someone who does not have CP. 

    Upto the age of 33 was under no medical specialist, since 2005 I've had six major operations at RNOH, Stanmore.  And things are getting worse. A brain scan in November 2017 shows a deterioration since the previous scan.
  • redchicken43redchicken43 Member Posts: 48 Pioneering
    I think every bodies experience with CP can be very different and would not say that there is a one size fits all, with one prognosis being the same for everybody. I have lived with CP all of my life and having a positive outlook is by far the most helpful thing that I have found and believe me I have had every test imaginable over the years. As we get older it’s important not to be so hard on ourselves. Sure there are things that I can’t do so well and part of me does get frustrated at times but there are many things that I can. Who knows what the future will bring but it’s important to adapt and live for the moment rather than reflect on the past. This sounds a bit like a surmon but I have a great life and have never let CP get me down.
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