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Things that you have found helpful for managing your CP

NoahNoah Posts: 430Member Pioneering
edited October 10 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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Replies

  • StayceStayce Posts: 275Member Pioneering
    edited November 2015
    Great post Noah - Yes, we all have a lot to share I am sure.Looking forward to everyone's posts here.

    Supplement wise I find Glucosomine & Chondroitin helpful
    Pain wise Acu-med patches
    As we both mentioned in the Baclofen post Epsom salts in bath and magnesium supplement/spray are beneficial for muscle spasms. I also like arnica oil (which you can use as a massage oil or put in bath)

    Orthotics wise I could not recommend lycra splints enough, been trying to put something together on wearers experiences for a while now.

    Big fan of osteopathy treatment for preventing contractures and general relaxation . I also take Alexander Technique lessons which I find helps a lot. If anyone decides to try either of these check your chosen practitioner is registered with associated regulatory body - for Osteopaths its GOsC and for Alexander Technique Teachers its MSTAT.

    I use an EMS machine (as part of my home physio regime) to stimulate the peroneal muscles which seems to be working slowly.

    Look forward to hearing what works for you Noah and everyone else :)
  • nicebootsniceboots Posts: 195Member 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.
  • StayceStayce Posts: 275Member 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
  • NoahNoah Posts: 430Member 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
  • StayceStayce Posts: 275Member 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_girlthe_velvet_girl Posts: 103Member 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.
  • StayceStayce Posts: 275Member 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_girlthe_velvet_girl Posts: 103Member 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.
  • StayceStayce Posts: 275Member 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
  • NoahNoah Posts: 430Member 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_girlthe_velvet_girl Posts: 103Member 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.
  • StayceStayce Posts: 275Member 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
  • ArmandoArmando Posts: 2Member
    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_girlthe_velvet_girl Posts: 103Member 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. 
  • SquiggSquigg Posts: 34Member 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?!
  • NoahNoah Posts: 430Member 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
  • SquiggSquigg Posts: 34Member 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_girlthe_velvet_girl Posts: 103Member 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!
  • SquiggSquigg Posts: 34Member Connected
    Is that Botox that u had injected?
  • the_velvet_girlthe_velvet_girl Posts: 103Member 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.
  • Richard_ScopeRichard_Scope Posts: 1,704Administrator Scope community team
    What  a great thread! I just use ice packs on my knees and hot baths full of Dead Sea salts. 
    Scope
    Specialist Information Officer - Cerebral Palsy
  • NoahNoah Posts: 430Member Pioneering
    Thank you for all your comments guys, this is a really interesting discussion, maybe invite others you know to join in.

    Yes ice packs are great, I use them regularly on my knees and feet to, I've got re usable ones I bought a while back from Lidls.

    Salts in the bath are great at helping the muscles relax.

    Between us all, we have a huge amount of experience, lets keep sharing it!

    :-)

  • Richard_ScopeRichard_Scope Posts: 1,704Administrator Scope community team
    Now this is NOT suitable for everybody but I had done quite a bit of research on the effects of diet on joints etc. For the last 5 weeks I have been on a self imposed gluten free diet. There is quite a lot of research that suggests that Gluten can lead to joint pain and inflammation. I do feel a lot better, however, I stress that this is not suitable for everybody and if you do decide to make major changes to your diet, please see your G.P. first.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • SquiggSquigg Posts: 34Member Connected
    edited July 2016
  • NoahNoah Posts: 430Member Pioneering
    edited April 2016
    Thank you for your comments, I agree that diet can help enormously,

    I have been on a gluten, dairy, sugar free diet for almost a year now, and it has completely changed my life for the better.

    Less pain, more energy, and improved mood! I'm now totally addicted to healthy eating and will never be going back to how I used to eat...........which simply was, all the time and everything in sight, especially large amounts of cakes, chocolate and biscuits!

    In-fact colleges at work used to bring me leftovers from meetings etc, as they knew I would always finish them off! 

    My healthy eating journey started, early 2015.  I  met up with a friend who also has CP and is a personal trainer, and asked him for some advice on improving my health and loosing a little bit of weight which had crept on since turning 30!

    I thought at the time there was very little more I could do, as I was already doing a lot of cycling, and because having CP, we use so much more energy for doing everything, I believed it was just normal, to have to eat tones of food to keep going, and it didn't really mater what!

    My friend said, you need to consider what you eat, if you want to improve your health, its not just about having a good excise routine. To which I just laughed, and replied, I've always been able to eat anything, and shrugged off his suggestion. A couple of months after that I got very poorly, and had to take 6 weeks off work. Now that was, when I discovered "Patrick Holford" A leading nutritionist -  And started to actually take notice and think about what I was eating and how it was effecting my body. 

    Reading Patrick Holfords books has been life changing, and I'm now back to the same weight I was when I was 18, I still eat a huge amount, but instead of anything and everything, I'm now very careful about what I eat, and I remain motivated to stick to my healthy eating routine, by remembering back to what happened when I ate everything, and I'm very determined not to go there again.

    What we decide to eat is a personal decision and to reiterate what #speedincaeser said, it is important to get advice from a professional prior to making significant changes in your diet, as one size does not fit all.

    Thanks again, and please keep posting what you have found helpful for managing your CP on this discussion.

    Noah
  • SquiggSquigg Posts: 34Member Connected
    Excerise and healthy eating... I've learnt to eat healthly and never put weight on at all and even now I' still weigh the same weight. Glad I feel that since joining the gym I feel fitter and stronger and managing CP a trying to overdo it not a good sign
     
  • NoahNoah Posts: 430Member Pioneering
    That's good to hear. I'm a believer that everyone can do some form of exercise no matter what physical impairments they have. Have you got any ideas on what more Gyms could do to encourage people with disabilities to take part? Maybe that is a question for another discussion, I will setup one up in a minute. Yes, I struggle to, with trying to not over do it, and push myself too hard.
  • WheeliebabeWheeliebabe Posts: 1Member
    edited April 2016
    I have Quodupledic Athetoied C.P. and I do regular physotheropy and this helps keep my muscules from stiffening up.
    One of my exersises that I do in my physio sesson is that I have to sit on the edge of the plinth and try to keep as still as I can whilst keeping my arms down by my side. Some days it is esier than others to do this specific exersise because my muscle tone veries from day to day.
  • StayceStayce Posts: 275Member Pioneering
    Hi All - This continues to be a great thread and will probably stand the test of time for others as they join the community. Let's keep it going :)  Speedincaesar if you prefer cold\ ice treatments on key muscle areas this is great stuff  - http://www.myoproducts.co.uk recommended to me by my osteopath.

    I agree healthy eating is important as carrying around excess weight with muscularskeletal problems cannot be beneficial, but not easy still work in progress for me. I try to eat in particular anti- inflammation foods as am allergic to NSAIDs ( great book in the dummies series)

    Best wishes 
  • SquiggSquigg Posts: 34Member Connected
    Well very interesting feedbacks here, :) Is there a fb group like this anyone that they have setup?
  • NoahNoah Posts: 430Member Pioneering
    Hi Guys,

    Thanks again for everyone's input, it is proving to be very helpful, learning from each other. Yes lets keep it going, I'm sure we all have many more things we can add, and if our experience helps just one person improve their quality of life then its defiantly been worth it.

    I don't know of a fb group that has been setup, I'm not on fb myself, but  sounds like it might be idea.

    Noah
  • liayn85liayn85 Posts: 31Member Connected
    Stayce said:
    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
    I did try Powerball and ended up throwing it out after a number of hours of frustration. I always thought my hand was affected rather mildly but as I age I see that it is not. I usually go to teacher specialty shops as they typically have fine motor toys and products at my level.

    Also Noah, I have been eating much healthier and I have noticed a huge difference in everything. After a few weeks, I even found myself craving vegetables. I just had an indulgent weekend food-wise, though with lots of walking, and the neuropathy is already getting to me.
  • NoahNoah Posts: 430Member Pioneering
    liayn85 said:

    Also Noah, I have been eating much healthier and I have noticed a huge difference in everything. After a few weeks, I even found myself craving vegetables.
    I'm really pleased that you have discovered the healthy eating can make a real positive difference. Keep it up  :)
  • MarieCMarieC Posts: 2Member
    Hi, I'm new to this online community and this is my first post.

    I'm 37 and I have CP. About three years ago, I discovered the hydrotherm massage. It's a massage system, where you have a massage, while lying on cushions of warm water. It helps my whole body and mind relax, especially  as I have problems with tight muscles. As you are lying on the cushions, it means that you don't have to turn over half way through the treatment, as your back can be reached by the therapist putting their hand between you and the cushion (a bonus for me!)

    I'm not sure how well known the hydrotherm massage is, as I had never heard of it before I did a Google search on different treatments. I can't recommend it highly enough. I know different things work for different people, but it definitely helps me. I was lucky enough to find a local hydrotherm therapist, so I usually have a treatment every other week.

    I hope people find my post helpful.
  • SquiggSquigg Posts: 34Member Connected

    Oh right is that done privately and how much did it cost? 
  • MarieCMarieC Posts: 2Member
    Yes I pay privately. Prices may vary, but I pay £35 for a whole hour massage, with oils and everything all included.
  • liayn85liayn85 Posts: 31Member Connected
    Squigg said:
    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?!
    Squigg,
    I'm sorry to hear about your hip pain. Are you a hemi? My CP affects my entire right side (spastic hemiplegia) and over the past few years I have had hip pain and neuropathy in my thigh and groin area on my left side due to the overuse. I think this stemmed from sitting down all day but most of all my commute, since even though I drove with my right foot my left side was trying to "guide" it along with the associated movement and the signals my brain was sending. Unfortunately it lead to a hip arthritis scare. 
    I have moved on to a job where I am walking often and not sitting down much, basically sitting when I want. I am wearing looser fitting pants. I am stretching more often and getting therapeutic massage.
    I don't know what kind of CP you have, but I would advise you to figure out if it is a bone, muscle, tendon, etc. problem. See a doctor if you need to get to the bottom of what is affected and go from there. Personally I don't trust doctors too much so I would just see one to figure out what it is. I would get therapy and massage as well if it is muscular or a tendon. I am guessing it is overuse but it could be caused by something besides exercise, something you do every day that you don't suspect.
    Best of luck! 
  • NoahNoah Posts: 430Member Pioneering
    Hey Everyone,

    Thanks for all your comments,

    Something that I have very helpful recently with managing my CP are compression garments.

    I now wear full length compression socks under my AFO's and find that they help improve function, muscle control and feedback. They can be bought from a sports direct for about £8 a pair or cheaper again on Ebay.

    Please keep your comments coming, we all love to read and learn about what each other is currently finding helpful.

    Kind regards


    Noah

  • nicebootsniceboots Posts: 195Member Pioneering
    Hi Noah, Have wondered about compression clothing for a while as it's similar to lycra orthoses that are sometimes used for cp. How do you find it helps? I find wearing lycra cycling shorts helps cut out some of the achiness around my hips... I found this out by chance as I wear them whilst cycling 
  • NoahNoah Posts: 430Member Pioneering
    Hi @niceboots

    I just love the the sensory feedback that the compression socks provide, they really assist with muscle feedback and movement control, I would recommend anyone with CP gives them ago, and you I have now found you can two pairs for £8.54 so not really anymore expensive than normal socks!  


  • StayceStayce Posts: 275Member Pioneering
    edited June 2016

    Hi Noah- Glad that compression socks are working out well for you. What brand did you end up getting?

    Hi @niceboots - Yes, this is how lycra orthoses were developed originally It was found that deep compression improved movement, sensory awareness and coordination for people with CP. The first lycra suit was very much like a wetsuit. I find lycra sock and shorts helps endurance levels. If I don't wear lycra sock I am more exhausted.

    Like you say, there are a lot of sport type options out there now too, which are aimed at the sport/ athletic market that are intended to aid recovery and improve posture, which can work just as well. It's certainly a growing market
  • NoahNoah Posts: 430Member Pioneering
    edited June 2016
    I have bought a load of different brands of compression socks so I could compare. Its still quite early days, but J2X Fitness are the cheapest, and probably the ones I like the most. I have also just got my DM orthotic socks modified, with the zips removed and the toe ends added. Although I not finding them that easy to get on now without the zips!

    I agree compression garments is a growing and very interesting market.

    Discovering how compression garments can help manage my CP is probably the best thing I have learnt in the last 3 months.

    I believe it would make a very interesting study, on how effective use of compression garments combined with Dance Movement Therapy could help improve movement control and produce long term positive outcomes for people with CP.
     
    I would be most surprised if a study has not already been done, maybe there is someone on the Scope Community that would know of such a study? 

    I also agree with @Stayce without my compression socks I feel more exhausted. 

    Thanks again guys for your valuable input into a very interesting discussion :-)


     
  • liayn85liayn85 Posts: 31Member Connected
    edited June 2016
    @Stayce

    Yes! I just started getting massage/trigger point dry needling, starting in October, and it is amazing and surprisingly cheap. Find the right specialist and accept varying levels of pain and discomfort (which is all anyone with CP does anyway) for a few minutes during the session and it will go a long way.
  • StayceStayce Posts: 275Member Pioneering
    edited July 2016
    Hi @Noah -Thanks for this. I tried DMOs with zip removed, but it meant having a big panel cut out at the calf, so I could scoop them on which meant I had no compression around the calf which I just didn't like. I have zips on mine now and they can be really tough to zip up, so know exactly what you mean. I have broken many a DMO zip trying to get them on and so has my physio trying to help me :) . I now buy the charity supermarket trolley token keyrings and clip them onto the  zip to pull them up (I have found it saves a lot of flesh :) then just unclip it when done up. I am sure they would put the zips back if you think it was easier for you, you don't know what's best until you try it.


    Hi  @Liayn85 - I totally agree dry needling acupuncture using trigger point therapy can be a really great way to help with pain/ muscle tone and any inflammation or swelling that can accompany these problems. It can indeed be worth the initial discomfort 

    Best wishes 
  • nicebootsniceboots Posts: 195Member Pioneering
    I'm now a compression wear convert!!! I have bought a pair of compression shorts and they have made a huge difference to the discomfort around my hips. They are 'cross compression shorts' They have thicker, stronger pulling lycra in a cross pattern across the front and back of the hip and groin area, that really helps support my hips and cut down the tight achy feeling that comes from the spasticity. They also help me maintain a better posture by 'prompting' me to push my hips forward. I have also bought a pair of compression socks to wear under my afo and Dafo.... If they work for me it'll be a bonus as they are significantly cheaper than the afo socks I use at the moment!
  • NoahNoah Posts: 430Member Pioneering
    Ah wow, I'm really happy to hear that @niceboots, please keep us posted on your progress.

    I would be most interested to know what make of compression garments you have found work best, and I will be looking up the shorts you mention.

    I have been wearing compression socks with my AFO's for a couple of months now and they have definitely helped improve sensory muscle feedback, reduce fatigue and help with muscle spasms.

    Wearing compression garments to help manage CP is something very positive we have collectively discovered by all sharing on the Scope Community.

    Please keep your posts coming, and thank you to everyone that has contributed, to make this discussion so helpful.

    Noah


  • NoahNoah Posts: 430Member Pioneering
    @niceboots, just wondered how you are getting on with your compression socks?

    Noah

  • nicebootsniceboots Posts: 195Member Pioneering
    Hi @Noah, I've not noticed a massive difference day to dat wearing the compression socks, although they day make a bit of difference in the gym and post exercise.... the shorts on the other hand have made a massive difference both for exercise and day to day, I find I can walk further with them on, not hugely, but an improvement, especially as I was feeling less able. They also really help the day after I've been extra active or if I'm having a bad cp day.
  • NoahNoah Posts: 430Member Pioneering
    Thanks for your feedback @niceboots, have you found one type of compression socks to be more helpful? Please can you provide me with some more details of the shorts you have found to make a massive difference? what make are they and where can you buy them from?

    Isn't it great when we discover something that helps manage our CP, all down to sharing what we have found to work on this amazing community forum.

    Noah
  • nicebootsniceboots Posts: 195Member Pioneering
    edited November 2016
    @Noah the shorts I use are called mcdavid cross compression shorts, I got mine on eBay or physioroom.com. I'm going to look more into compression socks when I've got a new afo, I think could do with a new one as I'm starting to bulk out a bit! I've actually got a noticeable calf on my more affected side - something I've not had for a long time!
  • NoahNoah Posts: 430Member Pioneering
    Thanks @niceboots, that's very useful information and I will take a look at the shorts to.

    Sounds like a good idea to re look at compression socks when you next get a new AFO, maybe chat with your orthodist about them.

    Great to hear you have started to bulk out, you clearly have been working very hard, keep it up and I'm over the long term you will continue to notice positive change.

    Do your current AFO's have windows cut in the back to allow the calf muscles to bulk out and fire? I have read some interesting studies on how AFO's with windows cut in the back reduce the chance of AFO's causing the calf muscles to shrink, they also help with ventilation, which as you know is another common complaint of with wearing AFO's.

    Noah  

  • nicebootsniceboots Posts: 195Member Pioneering
    You're welcome @Noah. I don't have a window cut into my afo - interesting idea though.... I'm mainly bulking out through hard work in the gym - a lot of cycling! That and a bit of the 30s spread beginning to appear! 
  • NoahNoah Posts: 430Member Pioneering
    Good to hear that you are doing lots of cycling and working out at the Gym, I too have found cycling an excellent way to try and improve my fitness.

    Talk to your your Orthodist about having windows cut in you splints to improve calf muscle function. In the mean time, if your calf muscles are bulking out and your splints are a bit tight, just loosing the strap slightly around the calf muscle can sometimes help improve function and it maybe worth experimenting a little with.

    Keep up the good work and let us how you get on,

    Kind regards

    Noah
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    I have just found this thread! It is brilliant, a great resource of information.
    Scope
    Senior online community officer
  • CathyInSouthAfricaCathyInSouthAfrica Posts: 16Member Connected
    I love this thread!
    I started something a few months ago, and I wanted to know if it would help anyone, as much as it helped me. 

    It is sort of a DIY combination of ABR, chiropractic and yoga.
    It has loosened my neck, so I can move almost the full rotation now, and even my shoulders and hips have more movement. I could not move my ear towards my shoulder, my neck was just like wood, now I can.
    I am using the principle that the ligaments around my neck are all scrunched up, and teasing them loose improves mobility.

    I sit on a straight-backed chair and try move to better posture:
    Lengthen back of the neck, and push it towards the wall behind.
    Tuck in chin to make neck vertical and head not tilted.
    Pull the shoulder blades down - (yoga: slide the skin and muscles of your back down)
    Lift (slide) the front space between  shoulder and chest up.
    Push the lower spine forward to make C-spine into S-spine.
    Push hips into chair seat, widening and opening them.
    Push heels into floor straight down, lift and extend toes

    It was practically impossible at first. I struggled to hold the pose for one second, and it hurt! I did this for weeks (3 or 4 times a week), gradually staying in it longer.

    Then I tried to balance a beanbag on my head. Thank goodness on-one was watching, or they might have died laughing.
    It felt really weird when I tried to walk with the beanbag, but the bumps walking felt good. It is like little tensions build up, almost sore. They eventually pop! That was fun.
    Now I wiggle my head while seated. When all the little tensions had popped, I started neck bends. Before, moving my neck was very uncomfortable. It felt like grit or powder was in my joints, and I avoided exercising my neck. But with the beanbag, that grittiness has gone.  I am the world's expert at giving up the first time, but I have eventually started to realize the worth of perseverance.

    After a while (over a few weeks) of stretching my neck, it started to crick - like when at a chiropractor. After a series of cricks, I could stretch more, and find more cricks. 
    I think what is happening is that the muscle is permanently tight, ie at its shortest, so when you stretch, the tendon is pulling at the connection on the bone, causing the stabbing pain. If you wiggle the muscle (or use muscle relaxants, or exercise, or massage, or acupuncture needle), the muscle relaxes, and that is the release/pop. Then you need to stretch it over a few days, without over stretching, to get it moving. 

    For me, the trick has been to start with the neck, because that has helped most, and seems the centre of things, connected to all "dem" other bones. You cant stretch fingers and toes, before the shoulders and hips are loose. Once one is loose, the connected ones need to be loosened, it is this progression which I found made it easier to focus my efforts, instead of blindly trying to stretch or tense every muscle I was aware of.

    At one point, when I tried to put my hips into alignment, it felt like the ball-joint at the top of my femur was going to break off.  I went to a chiropractor to help with that, and with yoga stretches, it has come right.  I just wanted to let anyone who had that problem know, there is a pain-free way of resolving it, and pain for pain's sake isn't the only option.

    I also try to walk the ParkRun every week.  The stretches done on my neck during the week seem to trickle down to my ankles during the walk.

    Hope this help.  I would really like to know if others have tried, yoga, Pilates or chiropractic. 
    Keep moving!
    Cathy
  • NoahNoah Posts: 430Member Pioneering
    Thank you Cathy for your post, it great that you have found something that works for you. 

    I would like to try Chiropractic and Pilates, do you have any suggestions on how to find a good practitioner?

    Yes, when I created this discussion I had no idea what a useful resource it would turn out to be. THANK YOU to everyone that has contributed.

    Noah

     
  • CathyInSouthAfricaCathyInSouthAfrica Posts: 16Member Connected
    I don't know how to find one, but keep trying. The 3 chiros I have been to have all fixed the aches I presented, but only one seemed interested in treating the CP. It is trial and error to find someone who has the interest of experience that is helpful.  One used traction and ancient machines, the others used only hands.

    I was scared of trying one, so luckily I twisted my back and had to go.  I guess the right thing to do is just to phone and ask, but I was scared of making a fool of myself - really unhelpful attitude!  Maybe make a game of seeing one, or to ask the ones in your area if they have other CP patients. Finding the right one is really worth it, but the ones here are exorbitant.  Luckily my medical aid pays.

    Pilates is so much easier, just go to a class. Most gyms let you have a free trial lesson and you dont have to join until you find one that is comfortable.  I was in my late 30s before I had the courage and insight to go to normal gym.  Most people are fantastic.
    I usually started by flap about at the very back, but after a month or 2, I really started being able to feel the stretches.  At first it was just a challenge to not run away and try focus and work out which limb to move where.

    Pilates is also great when the instructor gives details how to gain the pose.  Strengthening my core really helped me feel a bit steadier.
    I can't control my breath so well, it is hard to do it the way they say.  That is why it is so much better in a class, not individual.  You just do your best, and gradually it gets easier.  With a one-on-one, they try to get you doing it right, and disappointing them makes me want to not go back.  But anonymously flapping around at my own pace, without disrupting the class, I found I could get better over the weeks.

    I find my inner monster comes out when people try to force me to do things, so I just start avoiding them, even when they are really nice.
  • NoahNoah Posts: 430Member Pioneering
    edited December 2016
    Interesting, I like your take on why going to a class is better as you can flap around at your own pace and little by little it gets easier. 

    Well done for giving it a go, I'm sure your experience will inspire others to try.

    Thank you for your suggestions, that's great idea to ring round and ask if they have any other patients with CP.


    Noah

     
  • CathyInSouthAfricaCathyInSouthAfrica Posts: 16Member Connected
    Hi Noah - I wanted to keep this thread going, because it has so many good things and I hope others could share things they find useful.
    I am asking Father Christmas for one of those Powerballs someone mentioned - they look fun!
    I love the feeling of energy I have when I have done exercise, but I keep falling off the wagon. I start feeling sluggish after not exercising for 3 weeks - how do other people keep enthusiastic to exercise?
  • StayceStayce Posts: 275Member Pioneering
    Hi  Cathy
    I recommended the powerball - I hope Santa brings you one :). They are really great fun @ the same time. They take some practice to get started but worth the time you put in.

    Keeping enthusiastic about exercise is a tough one - I go for the more relaxation route towards exercise as I have found more by default that it's better for my high muscle tone. I take Alexander Techniques lessons which I really enjoy. I also use a foam roller which is excellent exercise

    Noah - How are you? Hope all okay be good to hear from you

    Best wishes 
    Stayce


  • NoahNoah Posts: 430Member Pioneering
    Thanks for keeping this discussion going guys :-)

    I understand staying motivated to keep going with the exercises can be a real challenge.

    Something that helps me is to keep setting goals however small to start with, and keep focusing on how you feel when you have reached those goals.

    Also try and connect doing your excises with other daily tasks, its important to try and take a long term view and be realistic.

    Ask yourself questions like, how is doing a this exercise going to improve my quality of life in the long term?

    Also make it fun!

    Hope you get your powerball, I to still need to try one of them!

    I'm good thanks Stayce, recovering from a broken rib due to not seeing a curb stone and falling off my bike, and probably went back to work a bit too soon.......

    I have some amazing new carbon Fibre AFO's, more on this story in the new year!

    Still very much work in progress :-)

    How are you?

    Noah
  • SquiggSquigg Posts: 34Member Connected
    Oh desr hope you have a speedy recovery.... On the plus side for me is will be refered to London hospital for cp as ongoing knee hip, back and ankle issue getting worst
  • NoahNoah Posts: 430Member Pioneering
    Thank you @Squigg

    Please let us know how you get on with your referral to a London hospital - I hope they are able to make some suggestions that will help you.

    Noah
  • SquiggSquigg Posts: 34Member Connected
    edited December 2016
    Thanks, will let you know what they say 
  • StayceStayce Posts: 275Member Pioneering
    edited December 2016
    Hi  All  - A great thread here still going strong :) .

    Can't recommend the powerball enough for a last minute stocking filler :).

    Hi @Noah - So sorry to hear about your broken rib. I hope you make a speedy recovery. Hopefully the Christmas break ( no pun intended here) will give you some time to rest :)

    I look forward to hearing about your carbon fiber AFOs in the new year. Keep us posted

    I am doing okay thanks - Still got major tendon problems in ankle having ultrasound treatment on it at moment but prognosis is probably not great given the time frame. Was told by specialist that they can't perform miracles ! His communication skills clearly need some serious work :) New night splint being cast in New Year 
  • SquiggSquigg Posts: 34Member Connected
    On that note has a really crapp week on wed I had an assetment for pip interview that was so depressing and uncomfortable by an harsh rude assessor...if I don't get what I hope to get I'm going to court and fight for what I should get, they did even do a sly game and will try to fail you.... Just be warned once u get interviewed for pip when DLA runs out.....
  • NoahNoah Posts: 430Member Pioneering
    edited April 2017
    Hi @ Squigg,

    Sorry to hear about your issues with your PIP interview, its seems to be that so many are experiencing similar issues. The Scope helpline is an excellent resource and we have a great team that can help you, with anything related to your benefits. I would recommend giving them a call if you haven't already sorted it and got the outcome you need.

    The telephone number to the helpline is: 0808 800 3333

    Kind regards


    Noah
  • NoahNoah Posts: 430Member Pioneering
    Hi @Stayce

    How are the tendon issues in your ankle - is the ultra sound treatment working? I remember having issues with my tendons in my left foot due to the way it rolled over. Since having my orthotics that correct that, I have not had nearly many problems tendon pain in my foot/ankle. Just a thought, it maybe worth discussing with your specialist how a different type of orthotic might help.

    On the subject of orthotics, I remember a while back you mentioned about creating a guide to orthotics?

    I may very well be interested in helping you with that, and your welcome to email Scope at [email protected] and ask them for my contact details if you would like to discuss the idea further.  

    Oh and btw I now have a powerball everyone! It is quite addictive, are there any training videos you can recommend?

    Kind regards


    Noah
  • nicebootsniceboots Posts: 195Member Pioneering
    I've picked up my new afo today, it's a cut down version of my old afo, it still goes up to just below my knee, but I still less bulky and made of a lighter plastic so it flexes with my movements rather than holding my lower leg totally solid. In theory it should allow my calf muscle more... It's going to take a bit of getting used to I think, as I've worn a solid afo that side for so long, but we'll see how it goes!!
  • SquiggSquigg Posts: 34Member Connected
    Update on pip I've gained high rate on daily living but standard on mobabity... I'm hoping I can still get a renewal badge as was on middle and high on dla. Was 2 points to getting high rate on mobabity and scored 10 points on that...  To be entitled for badge you have to get 8 points or more..... I already sent 2 emails stating this. I'm entitled I know it. If the council decide to be picky then I'll appeal and have a go.at pip...
  • StayceStayce Posts: 275Member Pioneering
    edited February 2017
    Hi @Noah

    Sorry for delay in responding - I have not been feeling too good with my foot ...

    Lovely to hear from you. How are things with you? How are the ribs after your cycling accident?

    My tendon issues in my ankle are not great. The ultrasound provides some relief but the swelling returns all too quickly (within 3 weeks back to where started). I have indeed 
    had my orthotics reviewed, but the view is that I already have the best orthotic setup I could have. I have had new ones made of the existing model. I am however awaiting a new night splint (should get this end of March).

    I get more relief from acupuncture that osteopath does @ mo and am having to use a foam roller to loosen tight calf for as can no longer perform a standard calf stretch without pain in foot on weight bearing over forefoot at the moment  Have you tried a foam roller? Quite impressed with it. 

    Wondering whether to look into hydrotherapy???

    Yes - I will definitely contact Sam for your contact details be good to chat about my idea about creating a guide and to chat outside community.

    Great about the powerball - I find this website good for videos - https://powerballs.com/videos/

    Best wishes 

  • SquiggSquigg Posts: 34Member Connected
    Since I injured my left ankle with a tear in tendon the only cure that helps to resolve the pain was storid injects and that did resolve it painwise... But now as been born with cp mild.... I'm now getting knee and lower back pains including occasion drop attacks..... Do any if you guys suffer from this??? 
  • StayceStayce Posts: 275Member Pioneering
    edited February 2017
    Hi Squigg

    Yes I agree cortisone injections do work well (had them for other injuries) but unfortunately specialist is
     against this for my ankle as there is a high risk of it causing tendon rupture!!! 

    I have had lower back pains in past but practice Alexander Technique now which helps me with that.

    Hope you don't mind me asking what is drop attacks?

    Best wishes 
  • SquiggSquigg Posts: 34Member Connected
    Where u drop to the floor without warning... 
  • StayceStayce Posts: 275Member Pioneering
    edited February 2017
    Hi Squigg -Thanks for explaining. I am sure there must be some members who experience this. Is there anything in particular that brings them on? Any pattern to them or warning signs so as to help you manage them?

    Best wishes 
  • SquiggSquigg Posts: 34Member Connected
    Here's the link  http://www.epilepsy.com/learn/types-seizures/atonic-seizures



    When when I get them there's no warnings or anything sadly but some do state flashing lights or senstive to light even..... I never use to have them till recently as I fell and banged my head on the leg of the table and was completely knocked out for god knows how long..... Then eventually i came round (luckily not in hospital) the worst place to be....... Ended up home bound till I was fully recovered it did take me 3 full days to recover. I think that's what started it off... Now got it forever.. 
  • NoahNoah Posts: 430Member Pioneering
    @niceboots How are the new splints working out?

  • NoahNoah Posts: 430Member Pioneering
    @Stayce - Foam roller sound interesting - Where do you buy them from?

    Thank you for the link to the power ball videos.

    Hope they can sort your tendon issues.
     
    My rib is a lot better thanks, although has left a big lump and still hurts, my challenging posture is even more challenging atm. I've been told with time the rib will re model itself and I have been working with a chiropractor to try and achieve better alignment.

    Kind regards


    Noah

  • NoahNoah Posts: 430Member Pioneering
    @Squigg

    Sorry to hear about your fall and banging your head,

    Have you been able to talk to the doctors about this? Maybe they can refer you to a neurologist - to see if there is anything that can be done to reduce the risk of you having your drop attacks.

    Kind regards


    Noah
  • SquiggSquigg Posts: 34Member Connected
    Haven't banged my head touch wood. Still waiting on an app referring to cerbal palsy and will mention it to them and see what they say.
  • liayn85liayn85 Posts: 31Member Connected
    edited March 2017
    Hey, with the recent activity in this post I just wanted to share a video i have been doing for the past 10 days or so that has changed my body. 
    I have mild CP that affects my arm more than my leg.
    I also had pain in my arm resulting from a fall in april that has been greatly improved. It has helped a lot with my symptoms affecting my hip and arm. 

    it can be modified and i really like how I'm feeling now. 

    Google running yoga with Adrienne. 


  • nicebootsniceboots Posts: 195Member Pioneering
    Hi @Noah I'm not sure about my new splint, it feels like they've made the heel raise a little bit big, it's not too bad in trainers, but in my boots it really messes with my walking pattern. It doesn't feel supportive enough to me either, possibly because I'm just not used to having the freedom of movement it gives me. I quite like the better toe off power it gives me, I'm going to make an appointment to see the orthotist to get the heel raise reduced a bit and see if there's a happy medium between firm support and good toe off power. I'm wondering whether a hinged afo might be an alternative...
    I have a foam roller And find it really handy! I bought it originally to use like a bolster for doing leg raises to build my quads, then my physio showed me how to use it to massage and it's really good! I use it on my calf muscles and back.
  • StayceStayce Posts: 275Member Pioneering
    edited March 2017
    Hi @Noah
    I got my foam roller from Amazon. https://www.amazon.co.uk/PhysioWorld-Foam-Roller-Blue-90/dp/B009ABLT14/ref=sr_1_6?s=fitness&ie=UTF8&qid=1488391473&sr=1-6&keywords=foam+roller

     But I believe TK Max also sell them

    But do make sure it's a smooth roller as one with knobbly cut outs will be too much for tight muscles get with CP. I was shown how to use it by my osteopath to myofascial release (basically soft tissue work that stimulates stretch reflex) as I say using it as alternative to standard calf stretch as can't do that at mo.

    Glad your ribs are on the mend - sounds painful 

    Regarding challenging posture. Tends to take a big dip doesn't it when we injury ourselves? I have found  Alexander Technique lessons to help here - really get you to move with greater ease with the best you have. Also works on breathing control/ technique which might also help you with your ribs

    Hope his helps

    Best wishes
  • StayceStayce Posts: 275Member Pioneering
    edited March 2017
    Hi @Squigg

    Thanks for the info on drop attacks. So sorry to hear about your fall. Definitely talk to your
    Neurologist about this as they may want to do a scan or offer some meds that could help you keep them under control.

    Let us know how you get on.

    Take care
  • StayceStayce Posts: 275Member Pioneering
    edited April 2017
    Hi all

    Just thought would recommend a little peanut shaped massage ball picked up from TK Max 
    Been suffering the last few days with Iliotibial band tightness and this has helped a treat.

    They also have some good foam rollers mentioned in earlier post.

    Hope it's  helpful to some of you.

    Best wishes
  • ZolphinZolphin Posts: 2Member Listener

    Hello

    I'm a carer and look after a number of children with a different disabilities. One of the girls has cerebral palsy and has limited use of her right hand. This makes being independent in some areas difficult. We brush and tie her hair before she goes to school. I was wondering whether there is anybody with similar difficulties. How do you tie your hair back without help? Just wondering whethe there is a way so I could show her?

    thanks

  • WilliamWalkerWilliamWalker Posts: 9Member Listener
    A lot of stretching. 
  • Kurran01Kurran01 Posts: 5Member Listener

    Hi,

    My son has mild CP. He is 14 years of age. I believe the correct term is lower limb diplegic spasticity. He basically walks high toes mainly on his left side. He is also profoundly deaf but wears cochlea implants so pretty much hears everything. We do a tremendous amount of stretching and lots of cardio when we have time. Could do more to be honest but it’s a school work life balance thing I guess. Looking at various orthotics to correct his peculiar gait pattern and wanted to ask this forum what works well to correct poor gait ? I’ve paid fortunes for splints, AFO’s and shoes non have really given my son the much needed support he needs when walking. His back is really badly arched when he walks and I reckon that’s his weak or undeveloped hips. Seen various specialist and to be honest its all very confusing.

    I’ve heard the term lycra splints being used and wondered if this could help his gait.

    Any thoughts here ?

     Avy

  • StayceStayce Posts: 275Member Pioneering
    edited January 2018
    Hi @Kurran01
    Welcome to the community and for sharing your son's experiences with orthotics. Sounds very familiar 

    Your son's back is probably arched because of a  forward posture due to the toe walking and tight hips because it feels safer balance wise to be closer to the ground rather than upright (it is very common in CP)

    Lycra splints are quite big these days particularly in Paralympic sport, so I would definitely recommend looking into them for your son.

    Lycra splints may improve your son's gait (it won't correct it completely) but it may make things easier endurance wise for your son or allow him to tolerate other orthotics in conjunction with the Lycra splint e.g an insole or AFO as Lycra splints  will lower high muscle tone.

    What is it about your son's current orthotic setup that isn't working for him?
    - Are they rigid and cause him pain?
    - Is his muscle tone high which is effecting successs of the device?
    - Is greater support needed to prevent his legs collapsing or going over?
    - Does your son get fatigued with walking?

    Generally Lycra splints will improve movement, sensory awareness (i.e awareness of where limb is and it's position) and coordination. Lycra socks or shorts might be suitable.  But I would stress that they don't always suit everyone with CP. Particularly if a greater level of support is needed than the Lycra fabric can be made to meaning a more rigid device is required as well as the Lycra splint or instead of.

    I would recommend having a look at DM orthotics website. https://www.dmorthotics.com

    You can get Lycra splints on the NHS so I would contact DMO and ask which NHS hospitals nearest to you they supply, then you can ask your GP to refer you to that hospital to see if they would be suitable for your son.

    Hope this helps Let me know whether you have any further questions 

    Best

  • Kurran01Kurran01 Posts: 5Member Listener
    Stacey,

    cant thank you enough. Will look into the above and particularly the Lycra Splints which I personally looked into a couple of years ago but was put off by my sons physio. Opinions differ so much don’t they and it’s tricky to work out what’s best. Looking into so many things no including surgical
    jnyervention for my son. He’s not in any pain when he walks but has a really inefficient gait. He gets looks everywhere he goes which is part of the territory I guess. He really needs to achieve that heel strike has the tie walking must be affecting his ankles, knees, hips and all the way up. Looking into FES now particularly the Bioness F300 which we trialled. Int resting but I don’t think it’s for Kurran. Has anyone come across a machine called the Lokomot ? Pioneered in Scandinavia somewhere will grab the details and add to this thread. Interesting also!!! Thoughts would be appreciated here on this. 

    Visitkng LOC in December. They are supposed the be the best so let’s see what they suggest to help improve my sons walking. 

    Please comment and lets keep this this thread going. Tons of stuff here from you guys and if I can make my sons life a little easier then that’s a bonus. 

    Avy 
  • StayceStayce Posts: 275Member Pioneering
    edited November 2017
    Hi @Kurran01
    No problem - Let us know how you get on about Lycra splints and @ LOC. Be great to hear about your son's progress with all these things.

    Why did your son's Physio put you off about Lycra splints?

    Does your son wear a night splint to stretch his Achilles' tendon and calf muscles at night? This might help

    Another thing to consider - Have you thought of asking GP to refer your son to a spasticity clinic? That would look at whether Botox injections (probably into the calfs) would help with your son's toe walking? Obviously there is a lot to be considered with this. But might be worth looking into to see if appropriate for your son 

    Best

     
  • Kurran01Kurran01 Posts: 5Member Listener
    Stacey,

    profound apologise mad busy at work thus the slow reply. The physio’s haven’t so much put me off but not even recommended such items. It’s always when I say “have you heard of x, and z” then they would say “oh yes we have that but we don’t think it would be suitable”. I feel that I’m constantly guiding these people or suggesting and they just seem to be reluctant to do anything to be honest. Everything we have done has been through our own research and contacts. Even the Lokomot I would strongly suggest looking into. It’s always the outlandish type products that get rejected initially and then come into the fore later because someone has written or spoken about it. 

    Im definitely listening to all the ideas here on this forum and have already produced a shopping list of things to buy. I partciculalry like the salts and tiger balm to alleviate any possible pain he might be in but at present very lucky my son hasn’t complained of any pain as such. 

    I streych with him him almost every day and the physio’s tell me this has been a massive bonus. He does still tip toe though which is annoying but he gait pattern of walking is so so complex honestlynita not just a heel strike thing it’s the whole hips, knee flexion and movement from top to bottom. So complex and we take these things for granted we really do. 

    Had a reply from DMO and I have fixed up an appointment to see someone about lycra orthotics at my sons physio’s place in Wembley. Can’t wait as you have spoken so highly about these. 

    Finally the physio sugested we contact a behaviourial optometrist which ia a very interesting angle. He has a lazy eye and this could also be a contributor to his poor walking and central alignment. Let’s see!

    So much to consider. Will keep you all posted as and when but I am so glad our paths have crossed and thanks to the author of this thread - bravo to you. 

    Avy
  • sunshinysunshiny Posts: 7Member Listener
    Hi guys im new to this,been great reading all the post. I have a 6yr old with cp,epilepsy and developmental delays. He cries quite a bit (mainly evenings and during the night)and although his vebal he wont ever say why,i have mentioned it to his g.p and also his physio therapist thinking his obviously got some pain somewhere but both their response were"i dont see why" so i just wanted to know has anyone with hemi cp had pain during the times mentioned he also gets up so many times during the night but wont answer when i ask whats wrong,i do know everyone is different but please can someone reply as i im sure im not imagineing it.
  • StayceStayce Posts: 275Member Pioneering
    edited December 2017
    Hi @Kurran01

    I totally know what you mean by constantly guiding Physios, orthotists etc.Every single device I have or therapy received has come from my own research and recommendation. My advice would be you and your son know his condition and how it affects his everyday life best - Keep recommending things, challenge these individuals:) And encourage your son to do the same so that he does this himself as an adult. There are new things out there all the time and one very small thing can have a big impact.

    Best



  • StayceStayce Posts: 275Member Pioneering
    edited December 2017
    Hi @sunshiny

    I have Hemi CP and although I am an adult I can relate to this. I think sometimes GP and Physios don't appreciate the secondary effects that CP/Hemi  can have. To them it's a non progressive condition so why should there be a reason for sleep difficulties etc. With the affected side it can be hard to get comfortable during the night due to stiffness or tightness. It's  also common to find it difficult to unwind after a long day at 
    school/work due to all the extra processing that has to take place because of the affected sidep

    I would recommend heat before bed - bath, wheat bag as this will relax the affected side.

    I would talk to the Physio/ orthotist about resting splints for night use. Some people find these helpful in terms of limb position at night. Another possibility might be a body pillow

    I would also recommend looking into mindfulness for children - there are a series of Techniques here such as the  body scan which will help with getting in a more restful mood and more ready for sleep.

    Hope this helps

    Best




  • Kurran01Kurran01 Posts: 5Member Listener
    Stacey,

    I have just committed £3k with London Orthotics Consultancy today!  It’s a lot of money I know but I’m desperate to see my son walk better and more efficiently. Met with a lady called Elaine Atkins who was wonderful. They did the whole gait analysis and came up with a set of orthotics which hopefully should help my son stand straighter and taller and walk with a better gait. We also get 6 after sessions within the price to ensure the fitting of the orthotics is accurate and comfortable.  

    During the appointment what was immediately noticeable was how the correct heel raises applied made my son walk better with composure and stability. No leaning back or arched back. No tip toeing either and that was just within the first half hour. Imagine with practise and time I could see my son walking much better and without doing harm to his knees and back.  Have never seen so much progress in one session despite having tried pretty much all of the seen all of the toe offs and AFO’s in the market. 

    Thanks for all the tips you offer Stacey can’t thank you enough to be honest. 

    Avy
  • StayceStayce Posts: 275Member Pioneering
    Hi Kurran01
    I am  glad that you have made some real progress with your son's orthotics - that sounds wonderful and potentially a real life changing moment. What sort of orthotics have they suggested? Did they make them while you waited?


    Best


  • AndMacAndMac Posts: 27Member Pioneering
    Fantastic thread, and so informative. Thanks to all. Commenting here to find this again.
    I have left sided hemiplegic cerebral palsy.
     By pure chance I got offered magnesium supplements to review, definitely going to take these religiously from now on.

    I've just started using a vibrating foam roller to release my tight muscles and attempt to reverse the CP crouch that has crept in to my posture. I'm 60 now. The contractures and spasms are now a bigger problem than the arthritic pains in my hip.

    Been refused night and day splints to straighten my now bending leg- by a GP, who was obviously looking at saving funds ,so I am looking at funding my own, IF I can find the right things to buy.

    Exercise is vital. I became sedentary with arthritis, and it's messed everything right up. Twenty -three years ago I could run 100m in twenty seconds, when I was fit Not a Paralympian (I reckon I was T37, for those who follow it) , but not slow either...Then I got cellulitis, tendonitis, stopped exercising every morning and things went slowly pear shaped. 



  • AndMacAndMac Posts: 27Member Pioneering
    Just a quick update on managing muscle spasms, a relatively new symptom for me.  

    I managed to get an Orthotics appointment, after seeing a physio privately, who told me the (trainee, with English as a second language) GP I saw was mistaken, and that I should have NHS orthotics. I went back to my surgery, and spoke to a different GP, who got me an orthotics referral. 

    Hoping to get a night splint to be able to sleep easier, and a support for an arthritic knee, too. 
     Exercise is still helping a lot , but the spasms can be pretty fierce. Baclofen helps me sleep, but not otherwise. 
  • nicebootsniceboots Posts: 195Member Pioneering
    Hi @AndMac good to hear you are getting somewhere with orthotics, it’s an unfortunate situation that adults with cp really have to push to get what they need. I had a similar experience a few years ago with a locum gp, and had to get the physio I saw to write to my gp and request a referral to a neurophysio and orthotics as the locum just referred me to the nearest physio which was msk and sports, with very limited experience with cp.
    Luckily my actual gp understands that I have a really in-depth knowledge of what I need and will do referrals to physio and orthotics without the need to see me. 
    I find night splints really helpful and actually sleep better in my leg gaiter than without. I also wear day splints that really help my walking and cuts down on pain and fatigue. Good luck with orthotics, did you wear them when you were younger? I found it really helps at appointments to discuss what I used before, and what worked best.
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