Grassbasher — Scope | Disability forum
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Grassbasher

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grassbasher
grassbasher Community member Posts: 9 Listener
Hi everyone I'm Gaz. I am a long term sufferer of sleep apnoea, a cpap user and sleep advocate. I help many people with sleep issues through local advertising and a Facebook support group I created to build community and awareness which is open to both sufferers and family members. 
I also suffer from Hydrocephalus which thankfully is asymptomatic.
Fitness is a big part of my life as is fishing, photography and growing hardy cyclamen.
A consultant told me that I would never lead a normal life with sleep apnoea.....he was so right and it gave me a new start, a direction that has been so positive and also helped many other people o:)
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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Hello @grassbasher and welcome to the forum. You've joined at an appropriate time, as it was World Sleep Day last week! You'd be the perfect person to ask for tips on this blog post I wrote yesterday!

    Thanks so much for sharing a bit about yourself :) I can see you've already been exploring the forum, but if you do need a hand with anything or have any questions please ask.

    Hope you're doing okay today, and I'll see you around the forum.

    Alex
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    Scope

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  • grassbasher
    grassbasher Community member Posts: 9 Listener
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    Thanks Alex, yes that was a big event with many taking part, sadly my business tied me up this year. Your blog mirrors a lot of what I tell people to try/avoid. But happy to answer any questions.
    We have a hidden pandemic in sleep disorders, an estimate is 1 billion  untreated/undiagnosed with sleep apnoea alone....scary numbers!
    Here are a couple of useful bits 
    Hope2Sleep a fabulous charity.
    SleepApneaStories a podcast hosted by Emma Cooksey😇😇😇
    Vik Veer is our resident consultant who shares his extensive knowledge with everyone via his YouTube channel.
    My story is featured on Hope2Sleep and the British Lung Foundation (asthma +lung UK)

    https://www.hope2sleep.co.uk/sleep-apnoea-patient-stories-gary.html

    Hope you find this ok
    Gaz

  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    1 billion is quite a big number it's true, has that been over the last two years then?

    Thanks for sharing such a wealth of resources @grassbasher I'm sure plenty of our members will find these informative and helpful, myself included :)
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    Scope

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  • grassbasher
    grassbasher Community member Posts: 9 Listener
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    No this has been stewing for some time! It really needs more awareness to highlight the issues, not only with patients but many GP's fail to recognise sleep issues.
    One really important thing is the Epworth score, most GP's/ clinics don't act on low scores, say under 12 which means people are missed. We now recommend that you over score to raise this to trigger a test and also that someone close to you does one for you and this is because we love denial when it comes to health!
    I hope everyone finds it helpful and I am always happy to help anyone who needs it 🙏
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    How interesting, my partner has raised his sleep issues with his GP quite recently, part in thanks to my own light sleeping and his heavy snoring! It is a little worrying, but hopefully we're taking steps to get the right support in place :)

    I'm sure a lot of people can relate to being in denial about their own health, but would be the first to advise others to seek help in the same position. Thanks again for sharing @grassbasher
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  • grassbasher
    grassbasher Community member Posts: 9 Listener
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    I was the classic denial case!! Now if I suspect a problem then I have no hesitation in telling someone.....it saves lives!
    Snoring is a huge problem for many and it impacts sleep quality terribly, it is a clear audible sign that sleep quality is not where it should be.
    Tips: 
    Sleep on your left side.
    Never on your back(gravity doesn't favour the airway).
    Avoid alcohol. 
    Try to encourage nasal breathing.
    A chin strap can help keep the mouth closed(Hope2Sleep sell them)
    A good app is SnoreLab which is £4 for a month and this should give you an idea of the problem!!
    Gaz
  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    Thanks for sharing some of your tips @grassbasher :) 
    National Campaigns Officer, she/her

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  • grassbasher
    grassbasher Community member Posts: 9 Listener
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    Your welcome. Plenty more yet o:)
  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
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    I think it's important to differentiate between obstructive sleep apnoea & central sleep apnoea; tho the former is the more common, & I think what grassbasher has commented upon. The Epworth Sleepiness Scale is useful to indicate/diagnose obstructive sleep apnoea only. As always, a patient should be guided by their GP/specialist's opinion.

  • grassbasher
    grassbasher Community member Posts: 9 Listener
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    Absolutely! The Epworth scale and indeed Stop Bang are just a guide and no diagnosis can be made from a tick box, the reason I suggest marking up is to trigger a test....the only way to get a proper diagnosis.
    A lot of GP's are still using it as a diagnosis and not referring patients on to a specialist.
    Central Sleep Apnoea is a very different condition and requires a different type of Pap machine, a normal CPAP makes things worse.
    There are other forms such as complex or mixed, also Upper Airways Resistance Syndrome (UARS) which a sleep test will miss because the Apnoea length is under 10secs. The symptoms and effects of sleep deprivation are the same. CPAP can be used to treat this in some cases. And of course ALWAYS get a proper diagnosis 😇

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