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Things that you have found helpful for managing your CP
Noah
Member Posts: 430 Pioneering
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 :-)
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 :-)
Replies
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
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.
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 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
How are you? Hope all okay
Best wishes
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
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! :-)
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
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.
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
Scope community team
Specialist Information Officer - Cerebral Palsy
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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!
:-)
Scope community team
Specialist Information Officer - Cerebral Palsy
Want to tell us about your experience on the community? Talk to our chatbot and let us know.
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
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.
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
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
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.
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.
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!
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
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!
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
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 :-)
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.
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
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
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
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
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
Senior online community officer
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
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
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.
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
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?
I recommended the powerball - I hope Santa brings you one
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
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
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
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
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
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
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
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
Best wishes
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..
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
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
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.
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.
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
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
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
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
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
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
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
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
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
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
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
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
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
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.
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.