Hi Tash

I'm 38 with spastic diplegia cp the easy part of your question is no I don't clench my teeth in my sleep but that doesn't mean that others don't I guess.

With regards staying mobile I find swimming helps though saying that I really need to start again I had to stop due to various surgeries over the past few years. I also have a manual wheelchair which I use some of the time to help with the fatigue etc. I often walk with the chair to help my mobility.

Over the years I've been reffered to physio and ots and all sorts many eventually say they don't know what to do with me and say I'm managing well so carry on!!

I also take medication dantrolene to help with the spasms in my legs though it's not a common tablet to use most people apparently use baclofen, but I have to be difficult I don't get on with it. It relaxed my legs too much. I also take diclofenac the combination helps with the tight muscles which I believe helps me be able to stay more mobile.

I used to use 2 walking sticks until some of my surgeries made me to unsteady on them although I'm slowly starting to go back to them. I try to go for a bit of a walk every day either with the sticks or pushing the wheelchair which I guess also helps I also walk about at home although I tend to use the furniture often to hold onto.

I found I had to fight for all my refferals to things like physio it tends to be a bit of a battle I've found to get support as an adult. For a time I also found yoga helped.

At the moment I'm attempting to come off my medication so not sure how I'd be but it will just mean I'll have to work harder at staying mobile!!
I hope some of this helps x

hi i have diaplegia but never heard the words until in my 40s yes i done lots built a smallholding planted a woods so for me not dwelling on it drove me on,maybe my mum and dad were in denial of course i went to childrens hospital once a year then discharged at 15.dad was a pro rugby player and again it spured me on to ride horses bikes and walk mies with my dogs,like everyone i slowed and tightened with age but i just gotta keep going.

Hi, I'm 25 and have diplegia. I walk un aided, and do quite a physical job. I have noticed I am alot tighter and more easily tired than I used to be, but I put that down to work.
In terms of managing my condition, I have carried on with the same exercises as I did when I was younger, I still sleep in a leg gaiter to give my hamstrings a good stretch, which I have done since a young age - and actually sleep better with than without, my orthotist says stretching regularly remains as important to maintain leg length - which will lessen the damage to hips and back.
I have recently gone back into an afo on my left leg and a dafo on my right. The afo has a raise on the heel to keep me level and I wear the dafo to support my right foot as that does most of the work.
I have found that using adult services you really have to fight to get regular physio, hydro and orthotic input. In particular with the supply of orthotics, they seem to me to be more concerned with budgets, rather than helping maintain my mobility, which earlier in my life I had so much surgery to develop. For example, I have a pair of piedro orthotic boots to wear when not wearing splints, that need replacing and the orthotics service will not replace them because I have splints, despite me explaining that I need the support when not wearing splints, that I can only wear for a short time at work as I'm on my feet for up to 7 hours, and they do limit my agility a little.
Hope this helps
chris

Hi, I'm 20 and walk unaided and had weight problems growing up. I've just started going to the gym and have lost some weight as well as improving some strength in my legs which is good.

Sounds like I have a lot to look forward too. I'm already feeling as if I will never get as much help as some people as I'm "too good". Although I'm still in pain when I walk and once I get a full time job I will be very tired and more likely to fall over.

I get constant pain in my ankles and back ache sometimes which seems to come and go depending on how much exercise i do, but the exercise is good for me and keeps my muscles less tight.

Hi Tash I am 43. I have cp with spastic diplegia. Like chattymossman I only found out in the last few weeks that I was diagnosed with this when I was 10. I had plaster splints then but thought it was a short term condition. However I have been suffering for years without really knowing the reason why. Ive had various physio since then but not once was I able to give them my diagnosis so I dont know if this would have made a difference in my treatment. I am very stiff on a morning and have difficulty getting up. I experience pain and stiffness a lot of the time and know my posture has changed and may explain the pain in back, hips and legs and tiredness. Now thinking back the diagnosis explains so much of the problems I have had with jobs where my legs ached and I was extremely tired all the time. Im currently not working as I am a carer for my husband. I dont know if I clench my teeth at night but I do during the day when concentrating. I should have seen my doctor ages ago about this but how many times can you see they with a bad back/legs etc..... However I have now made an appointment at my doctors in two weeks to discuss my diagnosis and if they can help me in anyway or if there is anyway I can help myself.
Is there anything I should be asking for e.g. referals/medication etc.?

Hi Tash

I was diagnosed with CP when I was a baby.I am now 33 years old and I have noticed changes in my posture over the last few years.

Yes for me the muscle pain, spasms, stiffness, tiredness are part of CP for me. How the symptoms show themselves is affected my fatigue, and stress.

The muscle spasm is managed by Gapapentin and Tizanidine muscle relaxants. I take 4mg tazanidine at night to manage spasms during the night and gabapentin to manage shoulder pain.

Exercise really helps to manage stress and pain.

I am very lucky that I have a very helpful and supportive Neurological Consultant

I do not clench my teeth.

Hope this helps.