Weltschmerz
Active member
- Joined
- Apr 14, 2019
- Messages
- 57
- Reason
- CALS
- Diagnosis
- 01/2019
- Country
- UK
- State
- SC
- City
- Edinburgh
Hi all,
With enormous thanks to all those on here who have helped so far, I am now posting about a nagging issue I’ve had for a while. How can you tell if a PALS is doing “well”, or if things are moving apace? For context my own PALS was diagnosed in January this year, with very few symptoms for only a few months beforehand. In February stairs became impossible, in March a wheelchair, in May we were onto a hospital bed and an electric wheelchair; then June a respiratory machine, which immediately became 24/7. We work on cough assist every day but secretions began in September and last month saw the arrival of choking and a croaky voice. Next up will presumably be a feeding tube but all in all I wonder: is it always this reactive? How can I tell whether all is “well” despite all of this? By that I mean observe or work on upcoming issues with any chance of mitigation. I’m in my mid-thirties and haven’t even seen many friends or family have illness, so being married to a PALS has been a trial by fire this year...I realise everyone’s experience seems to be different but this seems to have been a particularly brutal onslaught.
Thanks in advance.
With enormous thanks to all those on here who have helped so far, I am now posting about a nagging issue I’ve had for a while. How can you tell if a PALS is doing “well”, or if things are moving apace? For context my own PALS was diagnosed in January this year, with very few symptoms for only a few months beforehand. In February stairs became impossible, in March a wheelchair, in May we were onto a hospital bed and an electric wheelchair; then June a respiratory machine, which immediately became 24/7. We work on cough assist every day but secretions began in September and last month saw the arrival of choking and a croaky voice. Next up will presumably be a feeding tube but all in all I wonder: is it always this reactive? How can I tell whether all is “well” despite all of this? By that I mean observe or work on upcoming issues with any chance of mitigation. I’m in my mid-thirties and haven’t even seen many friends or family have illness, so being married to a PALS has been a trial by fire this year...I realise everyone’s experience seems to be different but this seems to have been a particularly brutal onslaught.
Thanks in advance.