GeorgiaPeach48
New member
- Joined
- Feb 23, 2015
- Messages
- 3
- Reason
- CALS
- Diagnosis
- 09/2020
- Country
- US
- State
- GA
- City
- Brooklet
Hello!
This my first post in this forum. My husband was diagnosed with ALS in September of 2020, but his first symptom appeared 6 years ago. His case is atypical in that it's Bulbar Onset, but doesn't seem to be progressing at a rapid pace. Six years ago I noticed that he was using a straw for all his liquids, including his coffee. I asked him about it and he said it was because liquids were running out the sides of his mouth. Today he's experiencing speech and swallowing/choking issues. His muscles have atrophied in his right shoulder and arm. He's lost a good deal of strength in both arms and hands. His lower limbs are NOT weakened at this point. He is having painful muscle spasms in both his legs. At the same time his first symptoms appeared, he was having back issues as well and now has hardware from L5 - S1. The surgeries did not really help with his back pain, and I often wonder if that too was an ALS symptom. I keep forgetting to ask his neurologist. 5 years ago, he was referred to an ALS specialist in Jacksonville who said he did not have ALS because he had great strength in all his limbs and his EMG was inconclusive.
Michael received both BPAP and Cough Assist machines. He tried the BPAP two nights and became very agitated - he feels like he cannot breathe and hasn't tried it again. Reading all of your posts I see that we must get him on these machines to make him comfortable and, hopefully, lengthen his life.
A year ago, he was declining rather rapidly. Thankfully, he's seemed to have hit a period of stability. Is this normal? To have periods of declining and then a leveling out. My husband is 53 and had a TBI when he was 21. I believe, like football players struck with ALS, his head injury has contributed to this unfortunate diagnosis.
Sorry for the long post!
Thanks for listening,
Renee
This my first post in this forum. My husband was diagnosed with ALS in September of 2020, but his first symptom appeared 6 years ago. His case is atypical in that it's Bulbar Onset, but doesn't seem to be progressing at a rapid pace. Six years ago I noticed that he was using a straw for all his liquids, including his coffee. I asked him about it and he said it was because liquids were running out the sides of his mouth. Today he's experiencing speech and swallowing/choking issues. His muscles have atrophied in his right shoulder and arm. He's lost a good deal of strength in both arms and hands. His lower limbs are NOT weakened at this point. He is having painful muscle spasms in both his legs. At the same time his first symptoms appeared, he was having back issues as well and now has hardware from L5 - S1. The surgeries did not really help with his back pain, and I often wonder if that too was an ALS symptom. I keep forgetting to ask his neurologist. 5 years ago, he was referred to an ALS specialist in Jacksonville who said he did not have ALS because he had great strength in all his limbs and his EMG was inconclusive.
Michael received both BPAP and Cough Assist machines. He tried the BPAP two nights and became very agitated - he feels like he cannot breathe and hasn't tried it again. Reading all of your posts I see that we must get him on these machines to make him comfortable and, hopefully, lengthen his life.
A year ago, he was declining rather rapidly. Thankfully, he's seemed to have hit a period of stability. Is this normal? To have periods of declining and then a leveling out. My husband is 53 and had a TBI when he was 21. I believe, like football players struck with ALS, his head injury has contributed to this unfortunate diagnosis.
Sorry for the long post!
Thanks for listening,
Renee