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Things that you have found helpful for managing your CP

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  • Richard_Scope
    Richard_Scope Posts: 3,630 Scope online 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 and Cerebral Palsy Programme Lead

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  • Noah
    Noah Community member Posts: 425 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_Scope
    Richard_Scope Posts: 3,630 Scope online 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 and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • Squigg
    Squigg Community member Posts: 34 Connected
    edited July 2016
  • Noah
    Noah Community member Posts: 425 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
  • Squigg
    Squigg Community member Posts: 34 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
     
  • Noah
    Noah Community member Posts: 425 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.
  • Wheeliebabe
    Wheeliebabe Community member Posts: 1 Listener
    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.
  • Stayce
    Stayce Community member, CP Network Posts: 843 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 
  • Squigg
    Squigg Community member Posts: 34 Connected
    Well very interesting feedbacks here, :) Is there a fb group like this anyone that they have setup?
  • Noah
    Noah Community member Posts: 425 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
  • liayn85
    liayn85 Community member Posts: 31 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.
  • Noah
    Noah Community member Posts: 425 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  :)
  • MarieC
    MarieC Community member Posts: 2 Listener
    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.
  • Squigg
    Squigg Community member Posts: 34 Connected

    Oh right is that done privately and how much did it cost? 
  • MarieC
    MarieC Community member Posts: 2 Listener
    Yes I pay privately. Prices may vary, but I pay £35 for a whole hour massage, with oils and everything all included.
  • liayn85
    liayn85 Community member Posts: 31 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! 
  • Noah
    Noah Community member Posts: 425 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

  • niceboots
    niceboots Scope Member Posts: 198 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 
  • Noah
    Noah Community member Posts: 425 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!  


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