Adults with CP - Need Encouragement

Siouxzie

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.

gnmeads

Hi and welcome to the Scope community! 
I will put you through to someone who can help you with this

MikeBroderick

Hi @Siouxzie:

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

BeccyJ

@Siouxzie

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!

steve51

Hi Siouxzie.
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 !!

JayPee

@Siouxzie am I correct in thinking that you work? Do you have access to occupational health (OH)  not the same as occupational therapy (OT) ? You can get some help via OH and Access to Work to make adjustments within the workplace. Often things change gradually and a total review is well worthwhile.

Smoky345

I have signed the petition like many of you I feel unsupported as an adult and am finding mobility more of a struggle.  I work full time, have had operations to address my Achilles tendonopathy and have developed osteo arthritis in my ankle joints due to wear and tear from my gait pattern.  Have had to resort to using a wheel chair for getting out and about and hate it.  I have had an OH assessment via my employer and some reasonable adjustments.  Have also had a home assessment and a grab rail installed in the shower but funding not available for bathroom as well.  I also have had physio therapy, cortisone injections, extra corporal shock wave therapy but feel I am deteriorating.  All very frustrating but lucky to have a supportive family.

JAS

I'm 39 and I have noticed that as I got older with cp that sometimes my knee joint tightens up. Miss the physio.

ruthwxm

Hi@Siouxsie!
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

Amy36

This is very interesting and I would be interested to hear how you are getting on.

  What is Baclofen?

ruthwxm

Hello Amy... Here’s the link to the NICE drugs website re 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...

Siouxzie

Hi - I take Baclofen at bed time.  I am prescribed 3 times a day, but I always try to do less when it comes to medication, with the idea that I might need more as time goes on.  Probably not what the doctor would recommend.  To answer Amy, Baclofen is a muscle relaxant, which I take to counteract the involuntary muscle contractions, which, currently, only bother me at night.  I do feel that exercise is the answer, I have been going to physio as well, and am given exercises to do - which I am very bad at completing, but a little is better than none at all.  Basically the longer I sit the worse I am, having great trouble straightening my spine, and walking those first few steps, then it frees up.  With the personal trainer, I didn't look for any particular qualifications, anyone calling themselves a trainer should be able to adapt their programmes to suit individuals.  I was lucky to find a very local guy who is enthusiastic and interested in the differences between people, rather that viewing everyone the same.  I think you just have to try people out until you find a person who you have confidence in, and is prepared to tailor their approach, whilst still pushing you (because I certainly try to do the minimum!).  What was the Op that Martin had? As foot drop is a major issue with the way I walk.

ruthwxm

Martin has cervical spinal stenosis, in other words the vertebrae in his neck were narrowed in places and pinching the spinal cord and associated nerves. By the time he was diagnosed after an MRI scan, it was so acute that he was given dire warnings that if he had a bad fall, whiplash in a car accident, or anything like that, he could be left permanently paralysed... The op he had was multiple cervical decompression and fusion, they took away the bone spurs causing the problem and fastened those vertebrae into place with screws, the bone then fuses together as time goes on. It was rushed through on NHS and as I explained above he is a lot better in many ways, and we are really grateful for that! We are fortunate that his problems turned out to be caused by something that could be improved by surgery. But we still feel concerned as to how full a recovery he will make - early days yet...
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!

Siouxzie

That sounds major surgery!  Good that is has worked well for Martin.  I find I am walking looking at the ground the whole time avoiding obstacles as I kind of slide my feet, so trip easily, then cannot recover as no balance.  Trainer and physio working hard on balance with me.  When I first started this I was just thinking general fitness, but nearly everything is tailored toward my condition, which is good in one way, but it does make you think about it too much, we have all had another life!

Amy36

Thank you, this is interesting and I have learnt something new.

ruthwxm

Yes Siouxsie Martin still has some issues with balance too, but not as bad as before! For exercise he has mostly just been trying to walk as much as possible but it’s very hard this time of year with the cold weather... He is just getting back to managing a bit of gardening, he likes that much better than doing exercises because it is real and achieves something... But he may need to start doing exercises too we will see what the Hospital physio says. Besides the fact that he feels like you and just hates doing them, we are nervous of hampering the bone healing that is taking place...
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