Deb11
New member
- Joined
- Jun 30, 2025
- Messages
- 2
- Reason
- CALS
- Diagnosis
- 2/2025
- Country
- US
- State
- FL
- City
- Jensen Beach
Bulbar ALS is such a horrible disease.
My 86 year old father started showing some speech issues December 2023. I told me he was having odd issues say a particular word that started with an L. But other than that his speach was fine. June 2024 he had a quad bypass and pulled through very well and was ready to start doing some traveling. But he and us kids started noticing his speech getting harder and harder to understand over the next several months. Every month it progressed. He also started drooling ALOT and started having issue eating. It took him a couple of hours to eat a meal.
During this time we had had 2 brain MRI, seen the neurologist twice (who said 'oh he's getting better' - NOT BY A LONG SHOT), been to a ENT several times, did 4 months of speech therapy and had two cookie swallow tests by a gastro. I wanted a new neurologist - one we used for my mother who passed away from Dementia, but it was a long wait to see him. Finally in Feb 2025 he saw the new Neurologist who immediately suspected BULBAR ONSET ALS. He order an EMG and another cookie swallow; which confirmed his diagnosis of Progressive Bulbar Onset ALS.
My dad did not want a feeding tube just yet, and did not want anything for breathing. By mid June 2025 he ended up in the ER requesting a feeding tube. During that hospital stay we put him on Hospice. The feeding tube along with the neubulizer treatments have taken what little enjoyment he had in life from him, as the schedules are every couple of hours. So sad. He lives now with my brother and hospice is taking over his care; visiting at this time once weekly.
We just noticed he's seems more depressed, and he mentioned some further breathing issues starting. We are going to discuss further with Hospice. But when he was in the hospital recently, Hospice mentioned to us that once breathing becomes a bit more of an issue, he could have just weeks or a few months left. But again, he just mentioned some breathing issues recently. He also said that last night he was up until 4am leaning over the toilet trying to cough up thick phlegm. He's only about 113lb and 86 years old. I'm praying God just takes him soon in his sleep; as the suffering is so hard to watch. And i'm so worried he will choke, and if i'm with him there is nothing I can do to help him.
From your experience caring for your husband, does my father's current state seem like he's close to the end? I know no one knows, and its hard to get any timeline on this, but its just so hard to watch him go through this.
My 86 year old father started showing some speech issues December 2023. I told me he was having odd issues say a particular word that started with an L. But other than that his speach was fine. June 2024 he had a quad bypass and pulled through very well and was ready to start doing some traveling. But he and us kids started noticing his speech getting harder and harder to understand over the next several months. Every month it progressed. He also started drooling ALOT and started having issue eating. It took him a couple of hours to eat a meal.
During this time we had had 2 brain MRI, seen the neurologist twice (who said 'oh he's getting better' - NOT BY A LONG SHOT), been to a ENT several times, did 4 months of speech therapy and had two cookie swallow tests by a gastro. I wanted a new neurologist - one we used for my mother who passed away from Dementia, but it was a long wait to see him. Finally in Feb 2025 he saw the new Neurologist who immediately suspected BULBAR ONSET ALS. He order an EMG and another cookie swallow; which confirmed his diagnosis of Progressive Bulbar Onset ALS.
My dad did not want a feeding tube just yet, and did not want anything for breathing. By mid June 2025 he ended up in the ER requesting a feeding tube. During that hospital stay we put him on Hospice. The feeding tube along with the neubulizer treatments have taken what little enjoyment he had in life from him, as the schedules are every couple of hours. So sad. He lives now with my brother and hospice is taking over his care; visiting at this time once weekly.
We just noticed he's seems more depressed, and he mentioned some further breathing issues starting. We are going to discuss further with Hospice. But when he was in the hospital recently, Hospice mentioned to us that once breathing becomes a bit more of an issue, he could have just weeks or a few months left. But again, he just mentioned some breathing issues recently. He also said that last night he was up until 4am leaning over the toilet trying to cough up thick phlegm. He's only about 113lb and 86 years old. I'm praying God just takes him soon in his sleep; as the suffering is so hard to watch. And i'm so worried he will choke, and if i'm with him there is nothing I can do to help him.
From your experience caring for your husband, does my father's current state seem like he's close to the end? I know no one knows, and its hard to get any timeline on this, but its just so hard to watch him go through this.
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