Had a virtual meeting with my MND consultant. I say virtual....the technology on their side didn't work so ended up just using the phone.
My 1st thought was what questions do I need to askπ€ I wasn't well prepared. I asked about staging...prognosis...and genetic testing. I'm sure as time and mnd progresses I will have more. I'll jot questions down from now on as I think of them.
He mentioned again peg feed as I had said no no no on the day of diagnosis.. He recommended a YouTube link to look at. Not sure...but stored the info.
It felt somewhat surreal to be talking DNAR and end of life in the context of myself. I've discussed these issues many times with others throughout my career..now it's my turn. Of course the consultant doesn't realise I'd planned to live forever.
I suppose in summary I was left thinking (as I'm sure is standard) there is no 'one size fits all' progression...prognosis so varied. Even though all roads eventually lead to the same place.
There will be progression that's a given and what my views are now will I'm sure change...I'm thinking it's probably useful to keep a journal. Anyway just my musings and ramblings - sharing is caring β€β€
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My 1st thought was what questions do I need to askπ€ I wasn't well prepared. I asked about staging...prognosis...and genetic testing. I'm sure as time and mnd progresses I will have more. I'll jot questions down from now on as I think of them.
He mentioned again peg feed as I had said no no no on the day of diagnosis.. He recommended a YouTube link to look at. Not sure...but stored the info.
It felt somewhat surreal to be talking DNAR and end of life in the context of myself. I've discussed these issues many times with others throughout my career..now it's my turn. Of course the consultant doesn't realise I'd planned to live forever.
I suppose in summary I was left thinking (as I'm sure is standard) there is no 'one size fits all' progression...prognosis so varied. Even though all roads eventually lead to the same place.
There will be progression that's a given and what my views are now will I'm sure change...I'm thinking it's probably useful to keep a journal. Anyway just my musings and ramblings - sharing is caring β€β€
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