Aging with Cerebral Palsy — Scope | Disability forum
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Aging with Cerebral Palsy

Gems510
Gems510 Community member Posts: 4 Connected
edited June 2021 in Cerebral palsy
Hello

I have mild Cerebral Palsy (Ataxic) which affects my balance and coordination. For the past year I have noticed my balance has become more unsteady, which was mainly down to the whole pandemic as I wasn’t able to get out and do my usual routine/exercise. However I have now been back to a kind of normal now for a good few months but I still find there are occasions where I am more unsteady than others.  The main reasons that affect my balance more, that I know of, is when I am tired or feeling unwell.  Could anyone give me some advice on what other factors could contribute to my unsteadiness?  I walk to work 5days a week so I do get exercise and I am seeing a physio.
Thank you.

Gemma, 37.

Comments

  • Richard_Scope
    Richard_Scope Posts: 3,614 Scope online community team
    Hi @Gems510
    Great to meet you and welcome to the community. On the occasions that you do feel unsteady, have you noticed it happening in a particular environment/time of day?
    As you have mentioned tiredness is a huge factor for everybody with CP. Fatigue can have a huge impact on our mobility and coordination. 
    It is really important to keep hydrated too. Dehydration can also affect our coordination. Have you spoken to your G.P.? It might also be worth having your ears checked to make sure the cause isn't an issue with your inner ear where the balance system is.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Gems510
    Gems510 Community member Posts: 4 Connected
    Hi @Richard_Scope

    it is more often when i am out and about that I am more unsteady; uneven surfaces.  Also I have noticed that it is more obvious during the day or after a long shift at work. So it ranges from a 4 hour shift to a 10 hour shift. The 4 hour ones aren’t as bad, but because I am a Receptionist so it is a lot of sitting down maybe that could have something to do with it?  I’m more unsteady when I walk home from work rather than in the mornings.  I do drink a lot of teas and coffees during the day, do you think I should cut down on them a bit and get more water ie. juices?  Also would my mood affect my balance? And a situation around me ie. if something is making me a bit nervous or sad?
    When I was diagnosed with CP, I was 2, my Mum didn’t get told much at all really about how it would affect me. Because I’m classed as mild they just couldn’t say a lot I don’t think, or just didn’t know.  
    I haven’t been to my GP yet, I thought I would explore this option first.
  • Richard_Scope
    Richard_Scope Posts: 3,614 Scope online community team
    edited June 2021
    Sitting in one position or sitting at all for a long time will definitely have an effect on your mobility and balance. Is there any way that you could stand occasionally at the desk or even stretch your legs? 
    Emotions could also play a part, If you are like me, when I'm nervous or anxious my muscles tighten significantly. Makes balance really tricky! 
    More water is a great idea. Caffeine is a diuretic and can dehydrate the brain and body. 
    The thing about CP is that affects everybody differently, even somebody with the same type as you. So, it is difficult for medical professionals to predict long term for an individual child beyond the commonalities of the condition.
    Do you have footwear that provides good support to your feet and ankles? 
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • Gems510
    Gems510 Community member Posts: 4 Connected
    I wear orthotics in my shoes, and I wear shoes/boots that give me a lot of support.  I don’t know how your muscles are, but mine are floppy compared to the tightness.  
    I am going to try drinking more juice and less tea and coffee. And I can walk around at work, I might try and do that a bit more then or occasionally stand.
    I will try anything because it does get me down at times and I am more self conscious than I have been.
  • Richard_Scope
    Richard_Scope Posts: 3,614 Scope online community team
    I can relate to the feeling of being self-conscious. Give the suggestions a try and also look at the fatigue information that I shared. It might help keep your energy levels up and manage your levels. We have a thread on things you have found useful to manage your CP. It's rather long but there's some great info on there.
    You are not on your own in feeling like this. 
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • Gems510
    Gems510 Community member Posts: 4 Connected
    I will look at these.
    Thank you Richard.

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