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Next week will be the 12th anniversary of my #ALS diagnosis. 11 years ago I was given six months to live.

F..king never give up.

Cogito ergo sum 💪

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Once again, after a coughing session, the nurse started cleaning the equipment WITHOUT FIRST CONNECTING ME BACK TO THE VENTILATOR. Fortunately, I was already at the computer and able to sound the panic alarm.

This happens when double-check procedures are taken as "disrespecting one's professional skills". Such an attitude would be unheard of in the nuclear industry.

They must use checklists for it

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https://www.apu.fi/artikkelit/todellinen-taistelija

Nine years have passed since that interview.

It was an educating reading: I had only minimal knowledge about ALS before, and following the life of Jason Becker who is composing music.

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nostr:npub1wvr78ya6qa3nsh4nkl5tfyux699j09gwsagsp2y3jqtr9jqzs57qc2k5g5 It was ventilating normally in the rubber lung.

I am wondering what could be a mitigation to prevent such mistakes. Probably a smart watch/ring with oxygenation and pulse measurements is able to notify.

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Had the trach cannula changed yesterday. All went well, except the nurse forgot to connect me to the ventilator after the job was done. It only took a minute or so to catch her attention and signal about the problem, but boy did it feel long.

Doesn't ventilator have an alarm?

It requires an ultimate stamina

Is it a tent with a heating stove?