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Quick deterioration in mixed CP

the_velvet_girlthe_velvet_girl Posts: 103Member Courageous
edited May 2015 in Cerebral Palsy
I have mixed mild CP which manifests in both my legs and left arm. I’m independently mobile and don’t have any support services. I have really deteriorated since Christmas and now have severe night spasms in my left leg and pain in my hip. I am also struggling with fatigue. I’m now sleeping 12 hours a night and struggling with work and looking after my home. My startle reflex has increased so I’ve had to stop my driving lessons. My GP has said there’s nothing that can be done and given me Tizanidine and offered to refer me for a wheelchair which I’m not keen on. I managed to get a referral to Physio who has provided acupuncture which has been fantastic but I can only have an 8 week block.
Has anyone else experienced such a quick deterioration?
Has anyone else been able to get Physio or acupuncture long term through the NHS?

Replies

  • RockyRocky Posts: 76Member Listener
    Hi, It is common to experience a deterioration in your condition as you get older. This could partly be due to your cerebral palsy and partly ageing in general. Scope have some information on Ageing and Cerebral Palsy on their website. You do not say how old you are which makes is difficult to judge but premature ageing can occur in people in their 20s and 30s. However, I agree that the issues you describe have occurred quite quickly. If your problems are related to CP, your doctor is correct and there is probably little you can do other than try and find ways of alleviating some of the symptoms. Physio is excellent, the problem being in most localities that getting physio for adults can be very difficult. Glad you find the acupuncture helpful but you may find that you have to pay privately for this in future. Keep talking to your GP to see if you can get another block and if there is anything else they can suggest.
  • milomilo Posts: 165Member Pioneering
    I had a very similar deterioration just over a year ago. I've found that the increased spasms in my legs made independent walking impossible and I now use a mixture of crutches and a wheelchair, I've also recently got a car with hand controls which is an absolute godsend. The tiredness has been a real issue and I've had to stop working for the first time in my life because of it.

    My physios all feel it's due to aging with CP and are helping me to adapt to it as there is little they can do to improve mobility. My neurologist on the other hand doesn't believe in CP getting worse and keeps suggesting psychological causes. Quite how that explains the swelling in my hips and ankles I don't know.

    All I can say, is keep pushing for help and don't accept anyone telling you that CP doesn't get worse with age, it does. As for a wheelchair, there are worse things that happen in life and you will find that it helps with the discomfort and the tiredness. Good luck.
  • RockyRocky Posts: 76Member Listener
    Thanks Milo, some good points and often coping with cp as you get older means making changes, as you say better to use a wheelchair occasionally and preserve your strength and muscle tone than struggle and be in pain. By the way, the cerebral palsy (i.e. injury to the brain) does not get worse. It is the effects of the cp on your body that can get worse and change as you get older
  • milomilo Posts: 165Member Pioneering
    Oops thanks Rocky, you're right to say it's the effects that can worsen rather than the CP itself. Ah well, off to do battle with the doctor tomorrow, guess it keeps me on my toes ( pardon the pun)
  • the_velvet_girlthe_velvet_girl Posts: 103Member Courageous
    I’m 27 but I feel more like 87 today! My Physio tried to suggest it could be psychological during my last acupuncture session and told me to try a relaxation CD which wasn’t of much benefit. I decided to ask a GP at the health centre to refer me for a wheelchair as I’m off work just now with severe spasms. This wasn’t my usual GP and she refused to refer me as she feels my spasms will get better if we can get my medication right. She offered to admit me to hospital for pain management as I’m struggling to shower and feed myself at times but I’m more relaxed in my own surroundings and I’m just about coping with my friend’s help. I’m feeling very frustrated just now and feel I can’t plan for the future as I don’t know how I’ll be health wise. Hope your GP appointment went OK Milo.
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