Dose anyone find there cp getting worse as they get older

[Wheelygiril]

[niceboots Volunteer]

I have certainly found that I have got tighter and have less energy as I have got older.

In my teens I used to cycle everywhere, swim almost everyday during the summer and get involved in all sorts of sports.

But at around 23 I started taking longer to recover and have a lot less energy than I used to and was more tight and achy.

I used to put it down to doing quite a physical job where I am on my feet alot, but now I believe it is down to the excess wear and tear than cp puts on my body.

[rcwallace21 Administrator]

Yes defiantly. I feel my stamina is reduce and I have to pace my self throughout the day. It is very easy to pull muscles etc and that can reduce my mobility. also had a displaced hip and needed surgery. I had a hip replacement a year ago and other stuff done to my muscles to keep me mobile. My recovery has been slow but I'm now doing are right.

[April89]

I feel so stupid for thinking it was just me! I had all the care and physio til I was 16 and when that stopped, I thought that just meant I was as good as I could be. It was my fiancé that made me realise that things weren't the same anymore - I have to ask his help with physio almost every day, I'm hurting parts of myself that never used to get in the way (I've pulled my back twice in a month now) I feel tired all the time (I thought this was my job too) and I'm falling a lot more - I work on a street with uneven paving and was falling almost every day... I haven't fallen for weeks now, but that just means I'm constantly waiting for the next one... I'm a lot more reluctant to go out on my own which means I'm socialising less and feel sadder... less like me and more and more about the CP.

What I hate most is not knowing what more there is to come for me and it frustrates me that all I can get is "this COULD happen to you", it feels like for all the medical files I have, someone should be able to tell ME what is likely to happen to ME!

[niceboots Volunteer in reply to April89]

I had all my physio and care stopped at 18, and carried on just doing my own physio that I had done since as long as I could remember. Then when I was 23 I felt there was a real difference so went to my GP, and faught and faught to get the right physio and orthotics input, (I don't think there is enough support for adults with CP) if I could give you any advice it would be to go to your GP and scream, shout and throw your toys out to get what you need. I am lucky in the fact that my new GP is very supportive and helps me to get what I need as he says only you know your body, and you know when somethings not right. He helped me to get as much of the right orthotics input as he could, and suggested for me to try baclofen. Which has made a massive difference, as I'm alot more comfortable and have a bit more energy.

[rcwallace21 Administrator]

You can have good days and bad days. I do worry about the future. I had my hip replaced 1 year ago and there was a lot of uncertainty about my recovery. However I'm regaining my mobility (which is extremely important) using splints , baclofen and positivity.

I'm trying not to think about what's ahead. things are good at the moment and nobody has any hard evidence. I'm apprehensive about falls too a serious injury would be devastating. But listen to your body if your too tired then don't do as much on that day. It reduces the risk and I've got a community alarm which makes me feel safer.

See :scope.org.uk/help-and-infor...

Also see:pollsapart.org.uk/sites/def...

Again this information may or may not apply to you as CP is so viable and does not replace any information you get from health professionals such as GP's or consultants.