Believer
New member
- Joined
- Sep 2, 2021
- Messages
- 7
- Reason
- Lost a loved one
- Diagnosis
- 09/2021
- Country
- US
- State
- TX
- City
- GRANBURY
My husband was diagnosed with bulbar onset ALS in September. On Sunday we had to go to pureed food because of a bad choking spell. We are in the process of getting a feeding tube. In the meantime, he has lost 4 lbs this week. He had already lost over 20 lbs since June. Milk products make him gag unless I put fruit or something in his shakes. He says, if no fruit etc, it feels like there is a coating in the back of his throat. I am trying plant based shakes but I am having trouble getting him enough calories. His speech is such that you cannot understand him. He is using a white board. His communications device is due any day. He has a wonderful speech therapist that has been preparing him for the device.
I do ok most of the time. I have a deep faith and we know that he will spend eternity with Jesus. However, sometimes I just fall apart. Sometimes my heart just breaks. Sometimes I just feel inadequate. Sometimes just sad.
I do ok most of the time. I have a deep faith and we know that he will spend eternity with Jesus. However, sometimes I just fall apart. Sometimes my heart just breaks. Sometimes I just feel inadequate. Sometimes just sad.