firefly34
New member
- Joined
- May 7, 2018
- Messages
- 5
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- US
- State
- AL
- City
- Enterprise
Hello,
I made a post a few months ago suspecting my Dad had ALS. Six months ago he was up walking, doing perfectly fine. It has been a steady decline to this point, and we have waded through rehab facilities and hospitals like they were hotels.
My Dad was finally transferred to UAB Hospital after developing breathing difficulties. He is currently on a ventilator and feeding tube. The neurologist said the whole team suspects whatever this is to be ALS or MMN (Multifocal Motor Neuoropathy). He said he sees some signs that this is not ALS, but you and I both know this is an uncommon disease that is different for every soul it touches.
We believe it will be ALS. I am my Dad’s sole caregiver and I also have been able to hold a full-time job because this has moved so rapidly. I’m wondering if someone can tell me what to expect in late stages. If he has already advanced to breathing difficulties, I know the prognosis is not good.
When I say “what to expect,” I don’t mean symptom-wise. How are ALS patients cared for? Are there special facilities where they are sent? Are they going to dump him from the hospital and make me take him back home? Everything is a blur right now.
If there are any other family members of people who have has ALS that could offer any input, I would greatly appreciate it.
I made a post a few months ago suspecting my Dad had ALS. Six months ago he was up walking, doing perfectly fine. It has been a steady decline to this point, and we have waded through rehab facilities and hospitals like they were hotels.
My Dad was finally transferred to UAB Hospital after developing breathing difficulties. He is currently on a ventilator and feeding tube. The neurologist said the whole team suspects whatever this is to be ALS or MMN (Multifocal Motor Neuoropathy). He said he sees some signs that this is not ALS, but you and I both know this is an uncommon disease that is different for every soul it touches.
We believe it will be ALS. I am my Dad’s sole caregiver and I also have been able to hold a full-time job because this has moved so rapidly. I’m wondering if someone can tell me what to expect in late stages. If he has already advanced to breathing difficulties, I know the prognosis is not good.
When I say “what to expect,” I don’t mean symptom-wise. How are ALS patients cared for? Are there special facilities where they are sent? Are they going to dump him from the hospital and make me take him back home? Everything is a blur right now.
If there are any other family members of people who have has ALS that could offer any input, I would greatly appreciate it.