Cerebral Palsy
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Lockdown, homeworking and CP

Charl73Charl73 Member Posts: 15 Connected
edited October 16 in Cerebral Palsy

I’ve not written much on here since I was first diagnosed with mild CP at 44. However, I’m after some further advice/reassurance please!

I’ve been homeworking now since April and although at the beginning and during the time between when I was furloughed I did go on regular walks with my partner.  However, I’ve now seen an intense deterioration in my confidence with walking unaided without the arm of my partner :-( I’ve had a few falls which have also knocked my confidence.  I sometimes feel that my legs are frozen and I can’t move, I think the majority of this is physiological but it is really getting frustrating and upsetting.  I’m fine when I’m in my own home, it’s when I’m out and about.  I’m considering getting a stick, which I don’t want to do.  I just wandered if anyone else has experienced this or has any advice on the way forward please.  Thanks so much for reading this.

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Replies

  • GeorgiacdonGeorgiacdon Member Posts: 19 Connected
    Hi @Charl73. I have mild right Hemiplegia and find a little bit of exercise is good. But when I am tired or been at work all day I start tripping over the silliest things. I also find that I can’t think straight when tired also. Which makes my walking worse as I’m worrying. I am trying to get the right medium with exercise and having a rest. But still not found the solution yet.
  • Charl73Charl73 Member Posts: 15 Connected
    Hi @Georgiacdon thank you so much for your reply. Reading how you fell is exactly me! If you find a solution let me know, take care
  • Richard_ScopeRichard_Scope Administrator Posts: 2,315 Scope community team
    Hi @Charl73
    Although I don't walk anymore I can relate to how falling can make you feel and the emotions it can conjure. I have roughly two to three bad falls per year and a fair few insignificant ones. I completely get it.

    First of all, @Georgiacdon is absolutely correct when they mention tiredness. Tiredness can really hamper our already tricky movement skills. For example, I will never attempt to get in and out of the bath in the evening after a full day and work or chasing around after our daughter. Here is something that I wrote about Fatigue and CP in the Scope advice pages.

    Keeping active is vital not just for our physical self but also for brains. Activity and exercise at whatever level really helps to maintain the neural pathways that send the messages to our limbs. Something that I started during the lockdown and working from home was Seated Yoga. This helps in two ways, physically by keeping the limbs and joints supple and mentally with breathing and mindfulness, this will help you to be able to control those feelings of panic that you mentioned.

    Now the practical stuff, make sure you have good supportive shoes! So many people contact me worried about their walking and or falling and they are going for outdoor walks in flip flops or sandals! Do you were orthotics, @Charl73?
    Also, I understand your reluctance to use a walking stick but mobility aids can also be liberators. In my case, a wheelchair revolutionised my life but I fully understand that using mobility equipment is an individual journey :smile:

    Scope
    Specialist Information Officer - Cerebral Palsy

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  • GeorgiacdonGeorgiacdon Member Posts: 19 Connected
    Thank you @Richard_Scope, will check out the advise page and the seated Yoga, in the last 6 months I have made a lot of changes to my lifestyle to help with my tiredness and feel better for it.
  • Richard_ScopeRichard_Scope Administrator Posts: 2,315 Scope community team
    Hey @Georgiacdon, I have too and the thing that I have found is that the changes don't have to be huge to be of benefit. If you have any tips for us you can share them in the Things that you have found helpful for managing your CP it's quite a large conversation but has some excellent tips from fellow CP'ers like us.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • Chloe_ScopeChloe_Scope Administrator Posts: 10,556 Scope community team
    Hi @Charl73, how are you? I'm 22 and I also have mild CP. I started using a walking stick when I was 18 due to fatigue and having more falls.

    I full appreciate the mental battle of using mobility aids and the feeling of 'failing' if you have to use one. However, over the last few years I have found that mobility aids actually have supported my independence and confidence. Have you thought about getting a stick that suits your own style? Here is the yellow walking stick that I use, it comes in a range of colours. :)

    There is always someone around if you want a chat and please let us know how you get on. :)
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  • Charl73Charl73 Member Posts: 15 Connected
    Hi Richard_Scope, thank you both for your responses.  I don't wear orthotics but I do have sturdy comfortable and supportive trainers.  I will have a read of the links you sent later today.  I may have to bite the bullet and get a stick, I've got one I got from Aldi a couple of years ago that I can dig out.  It's just taking that step; excuse the pun.  Thank you again so much for all your words :smile:
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,556 Scope community team
    No problem @Charl73! We're here if you need anything at all and do let us know how it goes if you do use a stick. :)
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  • Charl73Charl73 Member Posts: 15 Connected
    Thanks again Chloe_Scope . I've been going for some short walks the last couple of days.  Yesterday wasn't too bad but today was terrible :-(  I just couldn't let go of my partners hand, when I did I froze and became completely ridged.  If I held lightly to his finger I was ok but it was the intense feeling of falling over that I'm feeling.  When I freeze I tend to go on my tiptoes; I tend to walk on my toes first rather than my heels; which as you'll know is common with CP.  I don't understand why this has suddenly come on so bad, the only thing I can think is I had a fall at a train station a couple of weeks ago and perhaps this has knocked my confidence.  I'm going to get in contact with my physio to see if I can have an appointment.  I'm still doing my Pilates but this week I've been doing it via Zoom.  Thank you for listening; it does help just putting my thoughts down :)
  • Tori_ScopeTori_Scope Administrator Posts: 1,277 Pioneering
    I'm sorry to hear things weren't so good today @Charl73. I can imagine that the fall would have knocked your confidence, so it might take a bit of time to feel more comfortable again.

    How have you been finding Zoom pilates? 

    Let us know how you get on with the physio :) 
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  • Charl73Charl73 Member Posts: 15 Connected
    Thanks @Tori_Scope.  Zoom Pilates is great as I’ve got no excuse not to attend! I’ll keep you posted on my progress 🙂
  • Ross_ScopeRoss_Scope Administrator Posts: 755 Pioneering
    That would be great @Charl73, we'd love to hear how you're getting along with it :) 

    How are you doing today? 
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