- Joined
- Nov 12, 2015
- Messages
- 658
- Reason
- CALS
- Diagnosis
- 11/2015
- Country
- US
- State
- CA
- City
- San Diego
Yesterday we had our first ALS Clinic visit. I think my PALS was overwhelmed by all of the people. He says he is very tired.
He was diagnosed 3 1/2 years ago but was pretty much on a plateau until about 2 months ago when he seems to have fallen off a cliff. For the first 3 years his left hand and arm were affected and not much else. Now it seems like ALS has spread its tentacles throughout his body. He is having trouble sleeping because his breathing capacity decreases when he is lying down. Despite my trying to prop him up with a wedge pillow and more, he doesn't like them and ends up in a chair. His speech is starting to sound muddy. His legs are weakening and his right hand shows signs of going the same way as his left. He is tired all the time. He also resists my attempts to feed him because he has acid reflux as well.
I was somewhat emotional at clinic; I had hopes that his progression would continue along a slow path. The Dr. thinks it is still slow but he will end up quite disabled. The Dr. also brought up the possibility that FTD is raising its ugly head. I am already emotionally exhausted, not sure how I will do over a 10-year stint at this. We were going to travel next month but I have canceled it because he says he cannot do it.
We will be starting Bipap when it is ordered; I'm hoping it will help him to feel less exhausted. The ALS Association rep is going to come out and look at my impossible house and tell me if anything can be done to modify it. Meanwhile I'm still running my business (part time) and trying to deal with all of his issues that he can't deal with. I'm trying to hold off scheduling appointments for him until next week as he just needs to rest and process it all.
No other way to put it. ALS just sucks.
He was diagnosed 3 1/2 years ago but was pretty much on a plateau until about 2 months ago when he seems to have fallen off a cliff. For the first 3 years his left hand and arm were affected and not much else. Now it seems like ALS has spread its tentacles throughout his body. He is having trouble sleeping because his breathing capacity decreases when he is lying down. Despite my trying to prop him up with a wedge pillow and more, he doesn't like them and ends up in a chair. His speech is starting to sound muddy. His legs are weakening and his right hand shows signs of going the same way as his left. He is tired all the time. He also resists my attempts to feed him because he has acid reflux as well.
I was somewhat emotional at clinic; I had hopes that his progression would continue along a slow path. The Dr. thinks it is still slow but he will end up quite disabled. The Dr. also brought up the possibility that FTD is raising its ugly head. I am already emotionally exhausted, not sure how I will do over a 10-year stint at this. We were going to travel next month but I have canceled it because he says he cannot do it.
We will be starting Bipap when it is ordered; I'm hoping it will help him to feel less exhausted. The ALS Association rep is going to come out and look at my impossible house and tell me if anything can be done to modify it. Meanwhile I'm still running my business (part time) and trying to deal with all of his issues that he can't deal with. I'm trying to hold off scheduling appointments for him until next week as he just needs to rest and process it all.
No other way to put it. ALS just sucks.
