Have you heard of Phrenic Nerve Palsy? - Page 2 — Scope | Disability forum
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Have you heard of Phrenic Nerve Palsy?

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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @roe, thank you for taking the time to share this with us all! 
    We are very glad to have you with us on the community. :)
    I have used the Spoon Theory for many years and love the concept. Like you said, it is a good way to explain to family and friends as well. 
    Hope to see you around!

    Scope

  • Roe
    Roe Community member Posts: 3 Connected
    Lol hi again forgot to say i am also being investigated for apaeno and initial tests are registering 53 a minute ..which seems weird  but as my dad died of sleep apaeno im happy  to follow spec recommendations which will be a trial cpap machine. 
    My gp called me a PERFECT STORM yesterday lol but im determined to live as long as i can even if im huffing and puffing. 
    So any tips for making this  sht easier..hit me up..
    Oh do you guys do a meet and greet some where on here?
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @Roe, we currently don't do meet ups due to the large area that the community reaches. Please do feel free to have a look around and get involved with anything that takes your fancy!

    We always have a range of discussions going on in the coffee lounge, and we are always around to help. :)
    Scope

  • Shaxx
    Shaxx Community member Posts: 8 Listener
    Hi @Roe, gosh I hope you improve and you can manage your symptoms. The best thing for me to help with my breathing was getting off qvar (brown asthma inhaler) and instead I now take symbicort. It's like magic with comparison to qvar which did nothing for me. I am asthmatic so the nerve palsey plus asthma don't go well but the symbicort did help me loads. Not sure if they do a meet and great. I'm sure someone in scope could answer that however.  I think people on here from all over the world! 
  • papertree
    papertree Community member Posts: 1 Listener
    Hi, I'm new, I've had Phrenic nerve palsy for 8 years, it took a huge fight for 18months to be diagnosed, then 2 years 6months after it happened I had diaphragm plication surgery. 
    Symbicort is amazing, I have asthma as well and if I don't take my pump I feel it.
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Welcome to the community @papertree, great to have you with us. :)
    Scope

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