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Things that you have found helpful for managing your CP

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Comments

  • Noah
    Noah Community member Posts: 425 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
  • Squigg
    Squigg Community member Posts: 34 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
  • Noah
    Noah Community member Posts: 425 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
  • Squigg
    Squigg Community member Posts: 34 Connected
    edited December 2016
    Thanks, will let you know what they say 
  • Stayce
    Stayce Community member, CP Network Posts: 843 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 
  • Squigg
    Squigg Community member Posts: 34 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.....
  • Noah
    Noah Community member Posts: 425 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
  • Noah
    Noah Community member Posts: 425 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
  • niceboots
    niceboots Scope Member Posts: 198 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!!
  • Squigg
    Squigg Community member Posts: 34 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...
  • Stayce
    Stayce Community member, CP Network Posts: 843 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 

  • Squigg
    Squigg Community member Posts: 34 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??? 
  • Stayce
    Stayce Community member, CP Network Posts: 843 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 
  • Squigg
    Squigg Community member Posts: 34 Connected
    Where u drop to the floor without warning... 
  • Stayce
    Stayce Community member, CP Network Posts: 843 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 
  • Squigg
    Squigg Community member Posts: 34 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.. 
  • Noah
    Noah Community member Posts: 425 Pioneering
    @niceboots How are the new splints working out?

  • Noah
    Noah Community member Posts: 425 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

  • Noah
    Noah Community member Posts: 425 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
  • Squigg
    Squigg Community member Posts: 34 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.

Brightness