Samkl
Distinguished member
- Joined
- Nov 1, 2019
- Messages
- 143
- Reason
- Lost a loved one
- Diagnosis
- 08/2019
- Country
- AU
- State
- NS
- City
- Wollongong
My brother has just past the 12 month anniversary of his diagnosis, and continues to be (understandably) anxious and depressed. He is on meds.
Although his ALS specialist has recently stated he had classic limb onset ALS, I believe it is respiratory onset, since his presenting symptoms back in 2018 was shortness of breath, and it took many months before any other symptom was apparent apart from long lead time and Unexplained weight loss (I think a symptom of respiratory onset ALS ). The Confirming EMG identified the paraspinal muscles. It probably doesn’t matter, but it has me quietly questioning - there were delays in getting on to Riluzole before he started a trial because of doctors’ holidays or something. He’s still not on it. What else is not be covered or missed?
I think he is progressing quite slowly but there seems an attitude in his house that he should eat as little or as much as he wants, and that interventions are pointless, as appetite loss is a disease process an that he has no quality of life!!
At the moment the biggest impact on his quality of life is his emotional state! Everyone’s situation is so nuanced and different. For example, He has no appetite, which to me is a reason to pursue a PEG, but it was only through strong suggestions from me that it’s happening. Also, he has had throat cancer so eating and swallowing has always been a bit of an issue, which I feel is not taken in to account with an an assumption that he is actually further along than he actually is, with a resultant attitude around him of “just accept - there’s nothing to be done”.
What a rave this is - don’t feel you have to respond. I’m just letting of steam. My main question is about appetite. Is this the disease process? How do you determine what is anxiety-related appetite loss? I think he has lost weight because of the energy consumed with breathing, but is appetite loss a result or a process? S xx
Although his ALS specialist has recently stated he had classic limb onset ALS, I believe it is respiratory onset, since his presenting symptoms back in 2018 was shortness of breath, and it took many months before any other symptom was apparent apart from long lead time and Unexplained weight loss (I think a symptom of respiratory onset ALS ). The Confirming EMG identified the paraspinal muscles. It probably doesn’t matter, but it has me quietly questioning - there were delays in getting on to Riluzole before he started a trial because of doctors’ holidays or something. He’s still not on it. What else is not be covered or missed?
I think he is progressing quite slowly but there seems an attitude in his house that he should eat as little or as much as he wants, and that interventions are pointless, as appetite loss is a disease process an that he has no quality of life!!
At the moment the biggest impact on his quality of life is his emotional state! Everyone’s situation is so nuanced and different. For example, He has no appetite, which to me is a reason to pursue a PEG, but it was only through strong suggestions from me that it’s happening. Also, he has had throat cancer so eating and swallowing has always been a bit of an issue, which I feel is not taken in to account with an an assumption that he is actually further along than he actually is, with a resultant attitude around him of “just accept - there’s nothing to be done”.
What a rave this is - don’t feel you have to respond. I’m just letting of steam. My main question is about appetite. Is this the disease process? How do you determine what is anxiety-related appetite loss? I think he has lost weight because of the energy consumed with breathing, but is appetite loss a result or a process? S xx