michfox
New member
- Joined
- Apr 4, 2007
- Messages
- 3
- Reason
- PALS
- Country
- US
- State
- OHIO
- City
- Steubenville
Hi. My first post. My Dad was diagnosed first with PLS in 1987 (age 44), then with ALS in 1994. We have fought a long, hard battle for the past 20 years, and I think it is nearing the end. His has been slow-moving all these years, and since January has begun to decline very quickly. Dad is pretty much paralyzed, has had a peg tube since 2003, but has not had to use any bi-pap or vents. His respiratory is still okay, although I think his breathing has become shallow, and we have been using oxygen lately. Also, he is less alert, and seems to spend more and more time "somewhere else", not able to focus on anything happening here for too long. He did just get over a bout with pneumonia, which we didn't expect him to be able to fight off, so he obviously hasn't quit fighting yet! We do have hospice coming in now, and that has been a big help. We are grateful for all of these years we've had with him, especially as it seems most ALS victims go very fast. It's hard to actually believe this may be "IT".
My question is if anyone else has experience with mini-strokes? If we get him upright for anything, especially the toilet, he faints, and last week we think he had a mini-stroke (TIA) which affected his eye and mouth for about 24 hours, then went back to normal. The bloodflow is not getting to the brain, and I'm wondering if after all these years the ALS is finally affecting his heart as well? Also probably the lack of oxygen due to his shallow breathing... we don't think he would tolerate a bi-pap at this point, because he can't really move at all. He is also not sleeping at night, which means Mom is not sleeping, and it is affecting her ability to function and care for him during the day. He is on methadone and trillisate for pain, but has anyone had any luck with any sleeping medications? He is pretty sensitive to such things, but at this point we're willing to try anything.
I guess I've also been searching for others' experiences with the actual dying process of ALS, so we might know a little more what to expect, and to prepare ourselves? I did find some info from the hospice websites, but I'm interested in actual experiences. I know every individual case is very different, and it is hard to make generalizations, or even guess as to a time frame, but any input would be appreciated! You'd think we'd know everything there is to know by now, but we have been fortunate, that the "end stuff" was so long in coming. Thanks so much!
My question is if anyone else has experience with mini-strokes? If we get him upright for anything, especially the toilet, he faints, and last week we think he had a mini-stroke (TIA) which affected his eye and mouth for about 24 hours, then went back to normal. The bloodflow is not getting to the brain, and I'm wondering if after all these years the ALS is finally affecting his heart as well? Also probably the lack of oxygen due to his shallow breathing... we don't think he would tolerate a bi-pap at this point, because he can't really move at all. He is also not sleeping at night, which means Mom is not sleeping, and it is affecting her ability to function and care for him during the day. He is on methadone and trillisate for pain, but has anyone had any luck with any sleeping medications? He is pretty sensitive to such things, but at this point we're willing to try anything.
I guess I've also been searching for others' experiences with the actual dying process of ALS, so we might know a little more what to expect, and to prepare ourselves? I did find some info from the hospice websites, but I'm interested in actual experiences. I know every individual case is very different, and it is hard to make generalizations, or even guess as to a time frame, but any input would be appreciated! You'd think we'd know everything there is to know by now, but we have been fortunate, that the "end stuff" was so long in coming. Thanks so much!
