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Things that you have found helpful for managing your CP

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  • Stayce
    Stayce Community member, CP Network Posts: 843 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
  • Noah
    Noah Community member Posts: 425 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 :-)


     
  • liayn85
    liayn85 Community member Posts: 31 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.
  • Stayce
    Stayce Community member, CP Network Posts: 843 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 
  • niceboots
    niceboots Scope Member Posts: 198 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!
  • Noah
    Noah Community member Posts: 425 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


  • Noah
    Noah Community member Posts: 425 Pioneering
    @niceboots, just wondered how you are getting on with your compression socks?

    Noah

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

  • niceboots
    niceboots Scope Member Posts: 198 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! 
  • Noah
    Noah Community member Posts: 425 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_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
    I have just found this thread! It is brilliant, a great resource of information.
    Scope
    Senior online community officer
  • CathyInSouthAfrica
    CathyInSouthAfrica Community member Posts: 16 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
  • Noah
    Noah Community member Posts: 425 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

     
  • CathyInSouthAfrica
    CathyInSouthAfrica Community member Posts: 16 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.
  • Noah
    Noah Community member Posts: 425 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

     
  • CathyInSouthAfrica
    CathyInSouthAfrica Community member Posts: 16 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?
  • Stayce
    Stayce Community member, CP Network Posts: 843 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


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