wishmobbing
Senior member
- Joined
- Dec 5, 2017
- Messages
- 872
- Reason
- Lost a loved one
- Diagnosis
- 07/2017
- Country
- DE
- State
- BW
- City
- Stuttgart
What qualifies as good quality of life is very individual and a moving target.
When he was just needing the wheel chair and still being pretty independently with it, my PALS said that he would very much like a plateau now, please. He would have been perfectly fine to live with that level of disability forever and I felt the same. A few month down the road he already had a PEG, but did only use it for water/meds and was practicing to wear the Bipap. Speech was going fainter every day. Again he said that he was hoping for a plateau now, but there was a sense of emergency with it. Expectations adapted, still good with living in general.
But things declined steadily further and maybe two or three month later he told me (now spelling with his eyes) that now he hopes there's no plateau and he wants the last stage of his ride to go rather quickly. That's where he drew the line, he ate less and less and ALS did the rest.
When he was just needing the wheel chair and still being pretty independently with it, my PALS said that he would very much like a plateau now, please. He would have been perfectly fine to live with that level of disability forever and I felt the same. A few month down the road he already had a PEG, but did only use it for water/meds and was practicing to wear the Bipap. Speech was going fainter every day. Again he said that he was hoping for a plateau now, but there was a sense of emergency with it. Expectations adapted, still good with living in general.
But things declined steadily further and maybe two or three month later he told me (now spelling with his eyes) that now he hopes there's no plateau and he wants the last stage of his ride to go rather quickly. That's where he drew the line, he ate less and less and ALS did the rest.