Breathing

[Arta]

Hi All,
I've had a lung function test beginning of January this year and I failed. Apparently 30% of my diagram is affected by ALS.
I had an overnight assessment and apparently when I was in deep sleep my oxygen level dropped under 90% so about 20% of the whole night.
So they suggested I start using the over over night ventilator but they didn't push for it as they said is not too bad atm.

And also they could see me that I was not ready.

I know that everyone is affected differently and at different rates but wondered how soon after your diagnosis did you have to use over night venitilator?


Also I have had two falls inside the house the last two weeks. My knees just give in and I fall. I am sore all over but the hardest bit is the not being able to get up. I had to crawl from the hallway to the living room and cling to the sofa and after few attempts I did it.
I don't understand why though as after the falls I am able to walk as per usual with difficulties but able to walk.
Any ideas? xx

[Ellie]

Hi Arta,

Please don't think as having "failed" the lung function tests - there is no pass or fail, just your results. Even then, those results are just numbers really, the most important thing is how you actually feel...

Usually there are factors that prompt the need for non-invasive ventilation (NIV), also known as BiPAP or Nippy, and these would be headaches on waking up; reduced FVC or SVC results from your lung function tests; other respiratory test results; low oxygen Sats; poor sleep.

Given your overnight O2 Sats dropped below 90%, you would likely benefit from using NIV - once you get your head around the idea - but your doctors are obviously not overly concerned or they surely would have suggested you start it sooner.

If you want to learn more about it, click on the link but if you'd rather not or not just now, it's a good site for when you're ready: https://mybreathing.mymnd.org.uk/

I'm sorry you've had falls - they're scary, aren't they and they come out of nowhere! One minute we're upright, the next minute we're on the floor MND affects our balance separate to our walking ability.

Because it's important to stay safe and uninjured, if you haven't got a walker, preferably 4-wheeled, do ask your OT for one.

Take care.

Love Ellie.

[Arta]

Hi All,
I've had a lung function test beginning of January this year and I failed. Apparently 30% of my diagram is affected by ALS.
I had an overnight assessment and apparently when I was in deep sleep my oxygen level dropped under 90% so about 20% of the whole night.
So they suggested I start using the over over night ventilator but they didn't push for it as they said is not too bad atm.

And also they could see me that I was not ready.

I know that everyone is affected differently and at different rates but wondered how soon after your diagnosis did you have to use over night venitilator?


Also I have had two falls inside the house the last two weeks. My knees just give in and I fall. I am sore all over but the hardest bit is the not being able to get up. I had to crawl from the hallway to the living room and cling to the sofa and after few attempts I did it.
I don't understand why though as after the falls I am able to walk as per usual with difficulties but able to walk.
Any ideas? xx

Thank you Ellie xx

[Terry]

Hi Arta,

Other signs are headaches at night or first thing in the morning, that go away soon after you wake up. General beening tired during the day time can also be a sign that your breathing could be better but it is quite normal to be tired with Mnd.

I used to find that my knee would give away and I would catch it after about a inch of dropping. As I always used a weighted four wheel walker it was never a big problem because I could recover my balance.

So good to get a urgent OT and try to think why you are falling. It is not easy because it happens so quickly

Love Terry