How can I keep my energy levels up? Any recommendations for walking aids with a seat? — Scope | Disability forum
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How can I keep my energy levels up? Any recommendations for walking aids with a seat?

katy94
katy94 Community member Posts: 16 Listener
edited September 2021 in Cerebral palsy
Me again, hey all. Loving using this forum now, so greatful for all your previous advice. As I’ve mentioned in previous posts- I suffer with cerebral palsy hemiplegia to be exact. My CP has recently relapsed after giving birth two years ago. I’ve been going to neuro physio but not seeing much improvement in my energy levels I’m still finding long walks quite difficult and struggling to find the energy to tackle everyday tasks. I’ve got a neuro rehabilitation phone call appointment coming up next month and I should be having an Orthotics appointment in the next few weeks too, what’s in the meantime just wondering if you guys had any advice on how I could keep my energy levels up. Also I’ve never used a walking aid before I’ve never needed to previously found myself getting more and more exhausted wherever I’m going so been looking at getting a walking aid with a seat if anyone has any recommendations.. i’ve also as I mentioned previously been on the medication amitriptyline for pain and sleep however after taking it for a few months I started to get headaches on a daily basis so decided to cut my dose back, now I’m finding that I’m still in quite a lot of pain especially at nights and I’m struggling to get to sleep as I’ve been suffering with insomnia for quite awhile. A few of you have suggested baclofen in the past and my doctor has suggested that I talk to you guys again just to get a feel for how you manage on that medication. I’m hoping it will help with my leg muscle spasms. Anyway hope you’re all keeping safe and well in these uncertain times. I’m grateful for any advice that can be given..

Comments

  • Reg
    Reg Community member Posts: 109 Pioneering
    Hello 

    I have mild CP - mainly right leg and clawed hands.

    I have been having neuro physio - initially by mobile video call and now in person. The physio keeps saying to do less but to do what I do better - so rather than walk with a bad limp to walk a shorter distance with a less bad limp. She also says keep using the crutch - whether I want to or not . She thinks that is better for me than something with a seat as otherwise I would just walk more. Don't know if your physio keeps telling you to do less exercise ?! 

    The physio sessions have not helped the fatigue or the limp or ability to walk or flexibility but I see the sense in it for maintaining what I have - I hope

    As for baclofen , I was on it for years and also tried Tizadine - a similar drug. It certainly helped with the spasms but it made me really tired ( suddenly descends on you) so I eventually decided I was better off without it - the painkillers also make me very tired.

    I did go back on baclofen briefly after a fall and the physio said the walk was better so I guess it is a balance between baclofen side effects and mobility.

    Everyone is different though so hopefully you may not be as affected by the baclofen .

    I saw reference to orthotics but my physio mentioned compression shorts as my hip seems to have a mind of its own - just a thought in case they might be of help
    Reg

    I am a Scope volunteer.
  • katy94
    katy94 Community member Posts: 16 Listener
    Hi Reg, thank you so much for taking the time to reply. You’ve definitely given me some food for thought.. hope you’re well.
  • chiarieds
    chiarieds Community member Posts: 15,858 Disability Gamechanger
    Hi @katy94 - have you asked your neurophysio about walking aids? They should be in a good place to advise. You could also look here, perhaps this may help: https://www.completecareshop.co.uk/mobility-aids/walking-sticks/quad-walking-sticks/quad-base-walking-stick?sku=L29324
    I do also agree with walking less, but doing it better. As a long-retired physio, I had to tell myself to do exactly that after I fractured my hip; I walked slowly, but correctly; initially just as best as I was able, determined, in my case, not to develop a limp.....quality over quantity every time!
    My best wishes, & I hope your physio will advise.
  • Richard_Scope
    Richard_Scope Posts: 3,614 Scope online community team
    Hi @katy94
    Fatigue is a very common secondary impairment to cerebral palsy and your insomnia and chasing around after a toddler will be magnifying those effects.
    We have some CP and fatigue advice pages and a helpful video from UCLH

    Even though it sounds counterproductive, moderate exercise and of course, hydration is so important to maintaining energy levels. Has your vitamin B12 been measured? Low B12 levels are common in women living with CP. I would also recommend that you ask for a referral to a sleep clinic
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    Hi there 

    Have you thought of one of the wheeled walkers as an aid for walking 

    They have a seat on them 
  • katy94
    katy94 Community member Posts: 16 Listener
    than thank you everyone for taking the time to reply. I have now got myself a walking aid and have stated my baclofen which is making me a little spaced out whilst I get used to it. Really appreciate all of your helpful responses. This lovely community is something I’m loving being able to use for help at the moment. Hoping you’re all well. 
  • chiarieds
    chiarieds Community member Posts: 15,858 Disability Gamechanger
    Thank you for your kind reply @katy94 - pleased you've got a walking aid, & hope the baclofen helps. Please do let us all know how you get on. :)
  • katy94
    katy94 Community member Posts: 16 Listener
    So I’m finding the baclofen extremely helpful, it really helps me get to sleep and stay asleep while at the same time helping with my muscle pain and stop some of my spasms. It really is like a miracle for me at the moment I’m hoping that I don’t get too used to it so the effectiveness wears off. The baclofen combined with the amitriptyline I’m already taking and Co-Codamol really works a treat for me at night. Thank you to everybody that suggested I try this drug as it really does help! 

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