Does CP get tougher as you get older?

gavin87

Hello everyone. I'm a long time lurker but have finally decided to break my silence. I have a mild cp that mainly affects my right leg, however I also have problems with my hand-eye co-ordination and balance. Throughout my life my cp has mainly just felt like a very dull ache and I just got on with it, barely noticing it unless I walked a long distance.

However last Easter I was quite ill and was laid up in bed for a long period. Getting up and about was almost like learning to walk again. I could barely get up out of bed and needed to hang on to something to get me up. I found I wasn't able to put my heel down and resorted to walking on my tip toes just as I did when I was a child. My hand-eye coordination was just as bad, I reach to pick up an item and then I either knock it over or miss it completely. My muscles in my leg had really stiffened up and I was in an awful lot of pain.

After a few months worth of physio I had a semblance of normality but the pain continues. After a long shift at work I am back to standing on my tip toes. All I take is paracetamol and Radox bath salts and I go to the gym and swimming but these also really hurt. 

My question is now that I'm in 30's, how much worse is this likely to get? No one in the medical profession seems to be able to give me a straight answer. It's my body I want to know! I understand that the new NICE guidelines seem to be trying to help with adults with cerebral palsy but it seems too little too late. Once I left the child development centre it feels as if I'm just left to fend for myself. How do other people cope? I sometimes feel very down due to the pain I am now experiencing. 
Thanks for the replies in advance,
Gavin87  

martins

Hi Gavin87
My daughter is now 23 years old and I have to agree with you since she got to old for children services and moved to adult services no one wants to know I have to fight to get her things she needs. She to goes to the gym and does her own physio. She has been on baclofen for years but she needs something else to go with it to ease the stiffness in her legs. I have recently spoken to her consultant who has arranged for her to see a neurologist. I sorry to give you a short story to read but maybe you could speak to your Dr who could maybe refer you to a neurologist for some answers.
Good luck

Richard_Scope

Hi @gavin87
Really glad that you have posted but there is nothing wrong with a bit of lurking. As you probably know I live with quadriplegic CP and mostly use a wheelchair. It would be fair to say that over the years my mobility has decreased, however,  the fact that I detested physiotherapy and didn't do enough of it probably has contributed to that.

It is very difficult to get a straight answer from the medical profession for two reasons: There is not a lot of research currently about the effects of ageing on people with CP, that, and CP affects everybody differently. The NICE guidelines are an attempt to recognise and address the fact that a lot of people with CP also have secondary symptoms e.g arthritis and that transitional services from childhood to adulthood are poor at best. The guidelines are something I welcome.

In terms of the issue with your leg, I would suggest that because you were laid up in bed for a long time you have experienced some muscular atrophy through lack of use. This should right itself through physiotherapy. A lot of the time CP is a balancing act of not doing too much and not doing too little. I can't really comment on the problems you are experiencing with your sight and coordination. I would strongly suggest that you do seek a referral from your G.P. to a neurologist.

For pain, I do have hot baths with Epsom salts. Epsom salts are high in magnesium and a good natural way to combat muscle stiffness.I'm also a great advocate of swimming to keep the muscles as supple as possible. As you have mentioned that your leg is worse after a shift at work, have you spoken to your employer about reasonable adjustment? Something like allowing you to sit more often? Also, this may sound a bit simplistic but have you thought about changing your footwear?


I would love to talk with you further, to see where I could help.

gavin87

Hi thank you both for the replies. I am quite surprised to read that in 2019, there isn't a great deal of information on adults with cerebral palsy. I'm certainly going to seek help from a neurologist about my condition. 

As for work, I am a delivery driver for a well known supermarket. The job mainly involves being sat down whilst driving from A to B. It's a really good job for me. Say for example my next customer is an hour's drive away that's an hour for me to put the radio on and just sit back and enjoy the ride. Occasionally we'll have sometime where no customer has ordered so I'll be having a cup of tea in a layby somewhere. But on the other hand it can be quite physical. I have to load my van by myself within 32 minutes. The shopping in total can weigh over 900kg. So if you take into consideration that I'm loading the van, then unloading at my customers address then once I get back to store I unload the heavy totes. Those little breaks of mine become a welcome little part of my day when I can just relax.

I'm not always able to drive and will sometimes be allocated a shift in the store. That ordinarily means working on a checkout This is was my very first job when I was 19. Apart from when it was Christmas time I never felt ill. Now although I am sat down most of the time, the constant repetition tires me very quickly. I have been known to just get home, collapse on the bed and not wake up until 7 in the morning. It seems like a wasted day and will most likely mean I will be stood on my tip toes the next day.

For the most part my employer understands my needs but I do feel as if because my disability is mostly invisible and I just soldier on, there is a little bit of suspicion when I ask for something. Just about the only time I've been discriminated against was when I couldn't tie up a bag and I seemingly asked the wrong person for help. I am trained in IT however, now anything HR related is all done online so I can't do that job. Every other job is physical.

As for my footwear I wear velcro shoes and trainers. I need to get footwear that is wide enough and broad enough for my feet and also without laces as I cannot tie up.

Aran

Hi im 28 and suffer from CP I find swimming is really good for my legs 

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Richard_Scope

Hi @gavin87
I was recently at the Naidex show and I came across these:
Smart Laces
I'm going to get some for myself and thought they may be useful for you?