Things that you have found helpful for managing your CP — Scope | Disability forum
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Things that you have found helpful for managing your CP

Noah
Noah Member Posts: 423 Pioneering
edited October 2019 in Cerebral palsy
Just thought I would try and start a new discussion to create some kind of list of the things that we have discovered over the years that help us, as we all face similar challenges and it's interesting to learn about what strategies we have in common, and perhaps learn some new ones.

Maybe it's a particular type of exercise, food, medication, supplement, orthotic, or a unique way of doing something that you have found helpful.

Please get involved, I know you all have a wealth of experience, and a huge amount to share.I look forward to reading your comments.

Thanks :-)
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Comments

  • niceboots
    niceboots Member Posts: 196 Pioneering
    Hi great idea for a post!!!
    I do a lot of what I call traditional physio - the sort that most of us with cp have probably been doing all our lives.... But have adapted exercises over the years to make them suit me. I take inspiration from sports and yoga, picking up little tips/bits of advice from various physios and people that have helped me with my stretches and exercises. I use weighted sand bags and a yoga strap to act as an extra pair of hands to help me stretch.
    I do a simple gym programme to help keep mobile, strengthen opposing muscles to the ones that are tightest and break up the patterns of tightness. I also cycle when I can which helps me keep fit.

    I use orthotics, I wear an afo on my left (more affected side) most of the time, especially for walking and on my right for stretching while at rest, and for walking when I'm having a 'bad cp day'. I wear piedro boots with an insole in my less affected side. I find them the best footwear for getting my splints into as I don't have to go a size bigger, which is handy!!
    I wear a leg gaiter over night on my more affected side to give my hamstrings a good stretch and to stop that leg moving into uncomfortable positions, I also use my leg gaiter to help with stretching/positioning while doing physio.

    I take Baclofen to reduce my spasticity, and have warm baths to help relax my muscles too. In winter this is particularly important, as I find the cold makes me tighter and more uncomfortable, particularly where I suffer back pain and where I have metal pins in my thigh from a break.
    I also use heat packs where I'm tightest or achy in winter.
  • Stayce
    Stayce Member Posts: 755 Pioneering
    edited March 2016
    Anyone tried a Powerball for rehabilitation before?

    Just come across these and really impressed for shoulder/ arm/ hand/wrist rehabilitation/ exercise loosening tight muscles.
    http://powerballs.com/index.php. Also supposed to be good for sports (cycling etc) and for buddying musicians

    Takes a while to get it going but worth persevering with
  • Noah
    Noah Member Posts: 423 Pioneering
    edited March 2016
    Thanks Stayce for your comment,

    I have wanted to try a powerball for some time! You may have inspired me to buy one, they look like good fun to.

    Hope you keeping well?

    Noah
  • Stayce
    Stayce Member Posts: 755 Pioneering
    edited March 2016
    Hi Noah - Yes, powerball is fun and incredibly addictive. I got the basic one (as was unsure whether would get on with it), but there are even ones with built in lights and counters to track your progress, so can feel an upgrade imminent :) Helping me to relearn some lost movements. I am okay thanks; working hard on my rehabilitation after injury and got new lycra splints yesterday which feel much better as the elasticity wears out after a while and they become less effective, so feeling better at mo with new ones.

    How are you? Hope all okay

    Best wishes
  • the_velvet_girl
    the_velvet_girl Member Posts: 107 Courageous
    I like acupuncture it seems to relax my tone and I don't jerk myself awake for a couple of nights after my session but it's very expensive.
  • Stayce
    Stayce Member Posts: 755 Pioneering
    edited March 2016
    Hi the_velvet_girl

    Your post is really helpful. I too find acupuncture is good for my tone. I agree it can be very expensive, as with many of these types of treatments unfortunately. This is why both the osteopath and physio I chose to use are trained in dry needling acupuncture - to cut some costs. Maybe worth looking into

    Best wishes
  • the_velvet_girl
    the_velvet_girl Member Posts: 107 Courageous
    It's a private physio that does my acupuncture. I had it done by a Chinese specialist who put long needles into my head and I didn't find it as beneficial. I also got given a pretty copper & magnetic bracelet for Christmas. I'm going to start wearing it daily and see if I get any health benefits.
  • Stayce
    Stayce Member Posts: 755 Pioneering
    I wear a magnetic and copper braclet too :) It doesn't help with muscle tone, but I like to think it helps to reduce some joint pain
  • Noah
    Noah Member Posts: 423 Pioneering
    edited March 2016
    A most interesting discussion, I've not yet been brave enough to try acupuncture, partly because I have not yet found someone I trust to do it!

    I have recently been having some success with kinesiology tape - got my knee and my left foot currently taped up, to try and help some old injuries heal - It seems to be working.

    Thanks for all your comments on this discussion, it so helpful to all share what works for us individually.

    I need to get that power ball ordered! :-)
  • the_velvet_girl
    the_velvet_girl Member Posts: 107 Courageous
    The acupuncture needles are tiny. You just feel a wee tap when they go in and then I couldn't even feel them or see them as they were in my back and hip. I was terrified the first time I had it done but it was nothing to worry about.
  • Stayce
    Stayce Member Posts: 755 Pioneering
    edited March 2016
    I too have found kenesio tape to be useful in injury recovery and limb positioning. My physio has taught me how to tape key problem areas myself which has been really helpful. My phone is full of taping videos:)

    I totally agree that you have to find the right practitioner(s) that you trust to have something like acupuncture done. It is worth trying though, I have it regularly at both physio and osteopath. I would recommend as a first try having it done in large muscle groups somewhere you can't see easily (back, calf's). The more boney areas can be more painful at first (fingers, elbows and toes). Very good for reducing inflammation and muscle relaxation. Physios that use electrical stimulation to muscles before accupuncture needle insertion in my experience allows you to feel less, which might also be best for a first try.

    Hope this helps

    Best wishes
  • Armando
    Armando Member Posts: 2
    I don't have cp, but I do have spinal cord injuries and other disorders and can relate to this problem.

    I've tried just about all the therapies discussed in the thread. Many haven't worked, but the ones that have helped are a combination of Baclofen, Voltaren (a topical NSAID, though I don't think it is ibuprofen) and Tiger Balm.

    Tiger Balm coincidentally helps with arthritis I have in my lower back, but there is noticeable relief to my spasticity, too.

    Another I took recently, but had to discontinue because my drug plan didn't cover it, was Cyclobenzaprine. Maybe it was the configuration of these meds in my relief box, but Cyclobenzaprine, Baclofen, and the topical NSAID or Tiger Balm have helped me immeasurably.

    Note: Because of my other problems, I also take morphine and gabapentin. I doubt they are involved in the relief directly, but cannot discount the indirect.
  • the_velvet_girl
    the_velvet_girl Member Posts: 107 Courageous
    I find Gabapentin helps the pain in my hip which seems to have developed as I've got older. I don't feel the shooting‚ burning pains that I get with the startle reflex as bad when I take Gabapentin. 
  • Squigg
    Squigg Member Posts: 34 Connected
    I started to get hip pains like stabbing type.... It had eased itself. Just wondering if you all suffer from that? Just recently it started, i thought it was because i was overdoing myself at the gym.... Now wondering if that's cos of the cp and tensing up more often but the good thing i'm not falling over as i used to. Any advice for to stop the leg tensed up for no reason?!
  • Noah
    Noah Member Posts: 423 Pioneering
    Thank you for your comments.

    Yes, I have also been getting very sharp shooting pains in several of my upper leg muscles, they come on without warning and almost wind me with the level of pain. I went to the doctors about it and he suggested seeing the physio, and agreed that it was very much connected with my CP and muscle spasms.

    The best treatment that I have found personally for muscle spasms, is magnesium, Epson salts in the bath and seeing my osteopath. I have also found putting pressure on the muscle that is causing the pain with my thumb for a few seconds helpful, and is something my osteopath has taught me to do.

    Hope you find something that helps you, please keep us posted on how you get on.

    Wish you the very best

    Noah
  • Squigg
    Squigg Member Posts: 34 Connected
    I do give it a massage, to relax the muscles in my ankle part thats where it's really stiff and going to the gym 2-3x a week helps for my stamina. Well i was told to keep going to gym as that is more important to keep up the muscle and spams not to tense up. Just wondered if there is any other things like medications apart from steroids which made it tons worst and not having that again!
  • the_velvet_girl
    the_velvet_girl Member Posts: 107 Courageous
    Diazepam works when the pain in my hip is severe. I only take it when I'm on the verge of phoning 999 with pain. My neurologist wasn't keen on me being on it but GP agreed to give me a small amount to use in an emergency as all A&E did wss inject a muscle relaxant into my hip and give me diazepam to take. I haven't taken it in ages though so fingers crossed that continues!
  • Squigg
    Squigg Member Posts: 34 Connected
    Is that Botox that u had injected?
  • the_velvet_girl
    the_velvet_girl Member Posts: 107 Courageous
    I'm not sure as I was pretty spaced out after the oral diazepam! I think it was diazepam they injected into my hip.

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