ALS – My Respiratory System

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My respiratory system is being challenged because of ALS, which makes it difficult to get rid of phlegm and mucus. I can no longer spit, clear my throat or blow my nose but my suction machine can do it for me, thank God. I would be in big trouble without it because I would be coughing or choking all the time.

So here is how it works. It literally sucks the snot out of crevices that I didn’t know I had. The base of the machine has a motor and a small bucket to which a long clear hose is attached. The other end of the hose is attached to a slightly curved wand with the other end having a suction tip much like the dentist uses to suck fluid from our mouths. When I feel junk in the back of my throat someone sticks the wand into my mouth towards the back of my throat and they slowly pushes the wand deep down, almost near the gagging point until they hit phlegm. The machine sucks it out, it goes through the tube and into the bucket. We repeat this until I feel cleaned out. I use my suction machine multiple times each day. Sometimes I use it on my nose which works great. The first time we tried this I thought Mark was going to suck my brains out through that small tube because it made some really strange noises. If we don’t suction my nose, Mark will wad up a tissue and twist it up each nostril to clean my nose.

I probably told you more information than you wanted to hear but this is our ALS life and we have no choice but to adapt in order to survive. I’m so grateful that my family and friends are willing to adapt with me. I am blessed.

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7 thoughts on “ALS – My Respiratory System

  1. Rosemary, you could NEVER give us way too much information. You two are amazing and are opening our eyes to the real world of ALS. Makes me realize that all diseases have more to them than what we know about. Thank you for your true transparency so that we can pray the right prayers and truly appreciate life as it is and have a love for all of you!

  2. I appreciate your willingness to be so open. ALS is not pretty. Our loved ones have to do things we never imagined. I thank God for them…and for the technology that helps us cope. God bless you.
    Patty

  3. So it’s literally “up your nose with a rubber hose”. That line came from somewhere way back in my memory…did we use to say that when we were kids??? :)

  4. The ones who are blessed are all your faithful readers. We are learning so much about ALS and even more about how to manage life, no matter what it throws at us. You continue to dazzle, my beautiful and courageous friend!

  5. I appreciate your sharing of daily difficulties. It feels very intimate but is also very helpful to those of us not living at your house to remember to be grateful and to not take advantage of our luck to date. Plus – it is a reminder to send prayers to all of you. Thank you friend.

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