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Things that you have found helpful for managing your CP

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  • liayn85
    liayn85 Community member Posts: 31 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. 

    https://m.youtube.com/watch?v=0hTllAb4XGg
  • niceboots
    niceboots Scope Member Posts: 198 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.
  • Stayce
    Stayce Community member, CP Network Posts: 843 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
  • Stayce
    Stayce Community member, CP Network Posts: 843 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
  • Stayce
    Stayce Community member, CP Network Posts: 843 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
  • Zolphin
    Zolphin Community member Posts: 2 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

  • WilliamWalker
    WilliamWalker Community member Posts: 9 Listener
    A lot of stretching. 
  • Kurran01
    Kurran01 Community member Posts: 5 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

  • Stayce
    Stayce Community member, CP Network Posts: 843 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

  • Kurran01
    Kurran01 Community member Posts: 5 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 
  • Stayce
    Stayce Community member, CP Network Posts: 843 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

     
  • Kurran01
    Kurran01 Community member Posts: 5 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
  • sunshiny
    sunshiny Community member Posts: 7 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.
  • Stayce
    Stayce Community member, CP Network Posts: 843 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



  • Stayce
    Stayce Community member, CP Network Posts: 843 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




  • Kurran01
    Kurran01 Community member Posts: 5 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
  • Stayce
    Stayce Community member, CP Network Posts: 843 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


  • AndMac
    AndMac Community member Posts: 27 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. 



  • AndMac
    AndMac Community member Posts: 27 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. 
  • niceboots
    niceboots Scope Member Posts: 198 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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