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number of falls knocking my confidence

vicstar31vicstar31 Member Posts: 3
edited May 2014 in Disabled people
i have mild cerebral palsy but it dont seem so mild now i am 32 and have always been active but a few months ago i had a bad neck i couldnt move it for about 2 weeks this led to me having a feeling of being light headed which led to numerous fall where i couldnt get up and one really bad experience of nearly being run over . just after that i suffered a bad back which put me out of action for a week due to this i have stiffened up a lot and developed a fear of crossing the road i feel i have lost all my confidence. i went to the docs he prescibed me with baclofen to loosen me up but dont seem to of helped. i have a very supportive family they help by letting me hold on to them when walking but i want to get back to the way i was have been thinking of getting a walking aid does anyone know of which one to go for or if i should get one in the first place?? This situation is making me feel so anxious im afraid that i will end up not going out at all any advice would be most greatfully received. sorry for the rambling x


  • pantherpanther Member Posts: 251 Courageous
    I also have mild cp and found as I got older I stiffened up more and had more falls etc. My gp also tried me on baclofen which I didn't get on with it relaxed my legs too much and I could hardly stand.

    Try going back to your gp and seeing if you can be reffered for physio. You tend to have to fight for it as an adult and after a while I found that they were at a loss to know what to advise. But it did mean that I got to try out different walking aids, walking with a walking stick, walking with 2 walking sticks, walking with a frame with a seat etc. They also gave me some exercises to do.

    Maybe if you told your gp you wanted advice from a physio on if a walking aid maybe useful and which one, and also advice on any exercises they maybe able to suggest. They maybe happier to reffer you.

    If due to muscles being tight you are getting pain enquire about the possibility of being reffered to pain clinic again many different options that might help if you are in pain.

    With regards medication there are many different muscle relaxants, anti immflamtory tablets etc that could help so discuss that with them to. I worked my way through a number of different tablets before I found ones that help me.
    I also now use a wheelchair when I go out because the pain was also creating a lot of fatigue and I found I could do more if I was in a chair than if I was walking because I didn't get as tired. A chat with your local wheelchair service should be able to help you there again they may also let you try one for a few days so you can see what you think and how you get on.

    I hope some of this has been helpful to you, good luck
  • vicstar31vicstar31 Member Posts: 3
    hi Helen
    thankyou for your advice i did go to the docs and he has reffered me on to a phyiso but have not heard anything back yet
    The Baclofen seems to be creating more pain and lots of clicking and cracking bones i am so silly as i used to have physio as a child /teenager but thought i was not going to get old and things werent going to affect me so i gave up on my exercises how wrong was i . have been looking into getting a wobble board to inprove on my balance . i am so glad that there are places like this to come to knowing that there are nice people to talk to and are going through the same thing
    thank u x
  • pantherpanther Member Posts: 251 Courageous
    Your post made me laugh I think we've all been there and felt the same, like you I had physo as a child and older and hated doing every minute of it!! Like you I didn't believe the things they told me could happen would happen to me. But I guess at that time they also didn't know as much as they know now.

    My problems really started when I was working and living independently I was in a job that involved alot of standing and walking etc as well as walking to and from the train station every day to get to and from work. I guess juggling independent living and working was harder than I thought it would be.
    Now most of my problems are pain and fatigue related which is something that I wasn't aware could happen and came as a bit of a shock. There are good days and bad days the weather tends to affect things alot and there are days it really gets to me but you kind of learn to live with it. It's been hard but it has meant I've had to make adjustments not just in how I do things but also in my thinking.
    I just hope that my expierences can help let someone like you know you're not the only one going through these issues

    Have you read the cp and ageing factsheet on here under help and information it might also help by letting you know you're not alone with these problems.

    Take care
  • milomilo Member Posts: 164 Pioneering
    I would agree entirely with the previous reply, I gave up on physio in my late teens and managed fine for approx 20 years. Recently I've found that my mobility has worsened considerably and I now need to use a wheelchair and have just had to move into a house with stairlift and walk in shower. Its made me realise that I've probably been struggling for a while but not admitting it. When I went back to physio for the first time in years, the physio put it in simple terms that I had been lucky to get away with it for so long and that all the extra effort and wear and tear was now catching up with me.
    Ditto here. I have now had some Botox in my spastic leg which has helped a lot. Also if you had a sudden change get the doctors to check it is due to the CP. I find they never look past it for anything else.
  • mousiemousie Member Posts: 5
    I have a 4 wheel rollator walker. It has automatic brakes, so you cant fall. I got it originally as I suffered panic attacks and that would throw my balance and I would fall.
    Since the age of 39, my cp has worsened. I am stiffer, need afo's and tire more easily. The walker has made a massive difference. Keeps me up right, is a seat, carries my hand bag, has a detachable shopping bag and tray. I got it from my OT, you can view it at UNISCAN.co.uk, its the elite version and has a walking stick holder too (optional). Makes walking much easier and fits in a car boot
  • mousiemousie Member Posts: 5
    I keep reading how cp is not progressive, but in the last 5 years mine has been hitting me with all sorts. Stiffer, tired, effecting hands more, now having digestive problems, incontinence...........how is this not progressive lol.
  • milomilo Member Posts: 164 Pioneering
    Totally agree mousie, for a non progressive condition mine seems to be progressively getting worse recently. In past year, I've gone from walking to manual chair and now to powerchair
  • TrixTrix Member Posts: 4 Listener
    Hi there
    I am also 32 and in the last year especially have experienced far more falls, tighter muscles and generally finding it harder to get about. I have been extremely lucky that I was referred to a team of physios at a local Neuro Rehab Unit wo have been working hard with me to improve things again. Maybe have a chat with you a chat with your gp, see if there are specialist physios in your area. I have crutches (most of the time I can manage with one) but also have a wheelchair for the not so good days.
    My advice would be to find out what is available in your area particularly physio wise and perhaps a neuro rehab consultant, who in my experiences has been the only one to see me as a whole person not just a foot, hip or bladder. Stay positive and don't give up, referrals take time but there are people who can help

    Good Luck
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