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Adults with CP - Need Encouragement

Hi - interested to hear from other adults with CP. I was given the named diagnosis for the first time about 10 years ago, doctors assuming I already knew what the problem was. Previously referred to as 'mild spasticity' . I have led a normal life, brought up children, work full time, drive etc, but walking is becoming daily more challenging. CP plus a desk bound lifestyle conspiring to make this more of a problem. Anyone out there with any positive suggestions? At the moment I manage the condition with 2 weekly visits to a personal trainer - more for stretching than any physical jerks, a once in 3 weeks visit to an Osteopath for a very deep (painful) massage and stretch, and a nightly Baclofen tablet. Need some encouragement as I feel, as you may also, that we are on our own with this as adults. Visits to various specialists over the years have just sent me back to a few brief 'lessons' with NHS Physio, no help to me at all.
Replies
I will put you through to someone who can help you with this
Welcome to the Online Community, and thanks for your post.
I understand what you're grappling with. Like you, I have CP and am finding ageing to be a bit of a challenge. (Getting showered and dressed in the morning is taking me well over an hour, sometimes an hour and a half - where it used to take me 45 minutes, for example.)
It doesn't help that there's not a lot of research as far as I know into ageing and disability and ageing and CP.
I'm going to do some of my own research into it, and, where appropriate, share what I find here in the Scope Online Community.
We can't give or receive medical advice here in the Community, but I do find that stretching, where I can, makes a big difference for me. So I think you're on the right track with the personal trainer and osteo. A personal trainer made a big difference for me as well.
Some people feel that having a disability can have an ageing effect. I don't know if that's true, but I've had ancillary things like osteoporosis for years, and I'm actually comforted by the fact that I've already been through a lot of things that my family and friends haven't faced yet.
For me, it's down to trying to get super fit and healthy (which I need to do), so I can stay as mobile and pain free as possible.
I want and expect to still be walking well into my senior years.
Hang in there and keep battling!
-Mike
Thought I would just let you know that there are lots of us who feel unsupported with medical treatment as adults. There really is nothing after you reach 18 and it can be incredibly frustrating!
@emmaliv has started a petition to the NHS to highlight the issue. There's a thread about it here if you're interested. If you'd like to sign it I think it would really help if you add why you've signed.
https://community.scope.org.uk/discussion/33360/better-care-for-adults-with-cp#latest
Thanks!
It's great to have you on board !!!
I do hope that we can help you ???
Please please have a good look around our site.
If there is anything else that I can help you with please let me know !!
My husband Martin (69) has a big problem with spasticity in his legs, not actually caused by CP, his is because of cervical spinal stenosis - he had an op just over 2 months ago and that has improved his foot drop and balance issues a lot. But the spasticity is worse than even before the op - he finds it very very difficult to stand up out of bed in the morning, and quickly gets stiff and uncomfortable when sitting, specially towards the evening...
He just started taking Baclofen 5mg 3 times a day, it helps a bit but not much - specially not with the first thing in morning issue...
What time of the evening do you take your Baclofen, and do you have it on its own or with food?
He is waiting to see the spinal surgeon again end of January, hoping he will be able to start physio/ exercises after that, interesting that you feel the stretching exercises with personal trainer make a difference - how did you find someone suitable? What qualification if any should we look for if thinking of trying something similar?
Hope you (and anyone else reading this) has been able to enjoy the holidays in spite of difficulties
This is very interesting and I would be interested to hear how you are getting on.
What is Baclofen?
https://bnf.nice.org.uk/drug/baclofen.html
Martin has had dosage increased now to 10mg 3 times a day, and it’s definitely helping him quite a lot with the daytime spasticity, but he still has a massive issue with his legs curling up as soon as he goes to sleep at night, and then not being able to stand up in the morning!
He goes back to the Orthopaedic Hospital to see the spine surgeon a week on Tuesday, and also has a physio appointment for the same day, so we are hoping after that he will find something to help him make further progress...
The foot drop is horrible isn’t it Siouxsie. As it got worse Martin was finding it harder and harder to walk on any surface even slightly uneven, most Town centres and lots of other places becoming no go areas... The fancy brick paving you find in so many places nowadays is horrible for those with foot drop, nice smooth tarmac or concrete far better even if it doesn’t look so nice!
He also wants to achieve as much normality as possible but it is very hard isn’t it. Keep on keeping on eh! Thanks for the chat it’s been very helpful!
cheers Amy glad you have found it useful too x