Originally posted by Mary C
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Originally posted by LindaB View PostI think counselling is a great idea for any of us.
I do also find benefits from mindfulness...it works for me. Headspace App is good...there's also episodes on Netflix.
There's a good book Mindfulness in Eight Weeks by Michael Chaskalson. With guided practices.
😘Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.
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Rosemary6NT I'm lucky my glasses just fit on top of the mask. They are a vintage cats eye style...maybe that's why🤷🏼♀️
Annoying if you can't read or watch TV using NIV...maybe your respiratory nurse can make some suggestions? 😘Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.
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Originally posted by LindaB View PostRosemary6NT I'm lucky my glasses just fit on top of the mask. They are a vintage cats eye style...maybe that's why🤷🏼♀️
Annoying if you can't read or watch TV using NIV...maybe your respiratory nurse can make some suggestions? 😘Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.
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Rosemary6NT I hope that you can get distance glasses quickly. A call to your optician may get you a home visit. Or if you know your distance prescription somebody could pick an off the shelf pair up for you from Boots or somewhere. Good luck xxLast edited by Lynne K; 8 January 2022, 10:00.ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.
I'm staying positive and taking each day as it comes.
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Originally posted by Rosemary6NT View PostUnfortunately the mask means I can’t wear my glasses to watch or read with it on.
This is the mask I wear, it covers the mouth and nostrils, the same as your one, but it doesn't go up the face - it's called the Amara View, by Philips Respironics, who also make a similar fit mask, the DreamWear, and there are nasal pillow masks too. xx
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This gallery has 1 photos.Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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LindaB
I use you tube Christian meditations sometimes before Night time sleep.I had months of counselling until I felt I had talked through everything I wanted to.
Thankfully I sleep ok but due to dry mouth I-wake a few times for a drink of water and have no problem nodding back off.Dry mouth ongoing for 18 months despite sprays, artificial saliva, pineapple juice etc.
A grey rainy day.A friend just left so back to the book I am enjoying.Don’t feel like going out today so far.Have a good day.
Best wishes
Mary xx
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Mary C I think because of our profession we know counselling works. You have a good day too. My granddaughter visiting☕🍰Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.
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Originally posted by Ellie View PostRosemary, ask for a different mask, one which allows for wearing glasses, and do not feel bad about asking !! It's a quality of life issue...
This is the mask I wear, it covers the mouth and nostrils, the same as your one, but it doesn't go up the face - it's called the Amara View, by Philips Respironics, who also make a similar fit mask, the DreamWear, and there are nasal pillow masks too. xx
Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.
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