KatieNBoyd
Distinguished member
- Joined
- Oct 17, 2015
- Messages
- 151
- Reason
- Lost a loved one
- Diagnosis
- 11/2015
- Country
- US
- State
- MT
- City
- Boyd
Hello my friends, The words that you all share and the wisdom that you have spread on these forums has been invaluable.
I have been told by a friend and his pastor that I will be there at the right time for someone else that is going through this terrible disease and be able to help them. For now I have questions that lurk in my mind.
The "why is this happening?" "Why is my PALS so mean to me when I am trying my best to help him?" "What more can I to to help him?"
Your advice of setting limits for myself and he have made things easier.
My question today is a sharp one but continues to play in my head.
For those PALS who chose to not to do a PEG or any Vent/trach, How long did it last (diagnosis to the end)??
My PALS was DX in Oct (155 pounds) today he is maybe 120. He now eats only about 1000 calories a day. Gets up, eats, looks at his computer and returns to bed. Still walking slowly, eating slowly. We do not do the ALS clinics nor will he use his Bipap for more than 3 -4 hours at night (he hates it). He takes Hydocodone for pain only when he can't tolerate it anymore.
Thank you Katie
I have been told by a friend and his pastor that I will be there at the right time for someone else that is going through this terrible disease and be able to help them. For now I have questions that lurk in my mind.
The "why is this happening?" "Why is my PALS so mean to me when I am trying my best to help him?" "What more can I to to help him?"
Your advice of setting limits for myself and he have made things easier.
My question today is a sharp one but continues to play in my head.
For those PALS who chose to not to do a PEG or any Vent/trach, How long did it last (diagnosis to the end)??
My PALS was DX in Oct (155 pounds) today he is maybe 120. He now eats only about 1000 calories a day. Gets up, eats, looks at his computer and returns to bed. Still walking slowly, eating slowly. We do not do the ALS clinics nor will he use his Bipap for more than 3 -4 hours at night (he hates it). He takes Hydocodone for pain only when he can't tolerate it anymore.
Thank you Katie