Herdaughter
Active member
- Joined
- Sep 15, 2017
- Messages
- 50
- Reason
- Loved one DX
- Diagnosis
- 08/2017
- Country
- US
- State
- Oregon
- City
- Portland
This is my first time posting, so please feel free to advise if I’m not posting in the correct spot.
My mom was diagnosed in September and given an functional rating of 43 after her first clinic that same month. Last week, we went to her second clinic and her rating dropped to 28. Her lungs are the biggest culprit. The nurses tell us not to focus on the numbers but that’s a huge drop in 3 months.
She will start radicava next month and is now using an AVAP machine albeit reluctantly as it makes her feel a bit claustrophobic. The docs are placing great importance in the AVAP and not as much on Radicava. They are putting in a PICC line for the IV versus a port. I’m not sure why.
I’m very concerned about the rate of my mom’s decline. I wish she would get some help come in as I don’t live in town and can’t be there all the time. She says she doesn’t want to move into a care living center if she’s just going to die in a few months. It’s all really hard to hear but I also understand not wanting to spend the last couple of months of her life trying to adjust to a new living situation.
Ok - enough rambling..........does als progression ever plateau or does it remain progressing at a steady rate- whatever rate that may be?
Thank you for your help.
My mom was diagnosed in September and given an functional rating of 43 after her first clinic that same month. Last week, we went to her second clinic and her rating dropped to 28. Her lungs are the biggest culprit. The nurses tell us not to focus on the numbers but that’s a huge drop in 3 months.
She will start radicava next month and is now using an AVAP machine albeit reluctantly as it makes her feel a bit claustrophobic. The docs are placing great importance in the AVAP and not as much on Radicava. They are putting in a PICC line for the IV versus a port. I’m not sure why.
I’m very concerned about the rate of my mom’s decline. I wish she would get some help come in as I don’t live in town and can’t be there all the time. She says she doesn’t want to move into a care living center if she’s just going to die in a few months. It’s all really hard to hear but I also understand not wanting to spend the last couple of months of her life trying to adjust to a new living situation.
Ok - enough rambling..........does als progression ever plateau or does it remain progressing at a steady rate- whatever rate that may be?
Thank you for your help.