Teppo
New member
- Joined
- Dec 6, 2016
- Messages
- 7
- Reason
- PALS
- Diagnosis
- 06/2016
- Country
- Uni
- State
- az
- City
- phoenix
I am fairly new on this board, but am already fascinated that some pretty strong pronouncements are made here in a sphere (brain and neuromuscular disorders) loaded with ambiguity and uncertainty. It is so common on these pages for someone to post the disclaimer that "I am not a doctor and I don't make diagnoses", only to hurl the "ANXIETY" thunderbolt at the OP. Anxiety is a diagnosis, also, and actually requires insight and skill and personal assessment to correctly arrive at a conclusion.
Good to remember that anxiety about a problem does not reasonably mean that anxiety is the problem. Most of us with fatal or otherwise life-altering illnesses have had some richly justifiable anxiety at points along the way. Yes, that can cloud the situation, but it does not mean the anxious person is less deserving of respect than we are.
I know very well that all posters have tough challenges, but that does not mean that someone we believe does not have ALS is in fact living a better life than ours. If we think back to our pre-diagnosis days, we can all remember that all was not peachy all the time. Life is tough for most of us (with or without ALS) much of the time.
Also good to remember our own saga of symptoms and (often delayed) diagnosis. One does not have to look far (or attend an ALS support group breakfast) for people whose story begins with a year or two of fairly vague little things that eventually blossomed into a diagnosis of ALS. The dismissive "you do not belong here---we have real problems" is a shocking statement to me. Some of the inquiring DIHALS folks will eventually be found, despite our reassurances to the contrary, to have ALS. Some will have serious, even fatal, non-ALS processes. Some, to be sure, have "only" anxiety disorder.
I don't think we want to join in the "my fatal disease is worse than your fatal disease" competition that sometimes appears to be waged here. It is unseemly. Human existence seems to have plenty of stress and pain to go around for all of us.
Aspiration does not necessarily lead to pneumonias. Minor or moderate aspiration can lead to coughing. As long as our cough is strong enough, we will clear enough of what was aspirated to avoid lung infections. Every person (and dog and cat---every mammal) aspirates without known adverse impact during sleep. Mild cranial nerve or oropharyngeal muscle dysfunction from any of myriad causes can cause minor aspiration that the person is quite aware of. A chest xray or other conclusive proof of aspiration doesn't make the fact any more real to the person aspirating.
Again, in this thread, we have persons posting that ALS isn't about impairment---it's about unambiguous inability to do things. That is ultimately undeniable, but it is equally clear that even those posting such definitive pronouncements all experienced something less than full paralysis earlier in their course.
Whatever diagnoses each of us has today, or will have tomorrow, we have much more in common than the differences that separate us.
Have the moderators thought about doing away with the DIHALS category? if we aren't doctors and we don't really make diagnoses and if we are chronically irritated by those who bring questions (and fears and anxiety), maybe matters would be better without these threads?
Everyone's entitled to my own opinion.
T
Good to remember that anxiety about a problem does not reasonably mean that anxiety is the problem. Most of us with fatal or otherwise life-altering illnesses have had some richly justifiable anxiety at points along the way. Yes, that can cloud the situation, but it does not mean the anxious person is less deserving of respect than we are.
I know very well that all posters have tough challenges, but that does not mean that someone we believe does not have ALS is in fact living a better life than ours. If we think back to our pre-diagnosis days, we can all remember that all was not peachy all the time. Life is tough for most of us (with or without ALS) much of the time.
Also good to remember our own saga of symptoms and (often delayed) diagnosis. One does not have to look far (or attend an ALS support group breakfast) for people whose story begins with a year or two of fairly vague little things that eventually blossomed into a diagnosis of ALS. The dismissive "you do not belong here---we have real problems" is a shocking statement to me. Some of the inquiring DIHALS folks will eventually be found, despite our reassurances to the contrary, to have ALS. Some will have serious, even fatal, non-ALS processes. Some, to be sure, have "only" anxiety disorder.
I don't think we want to join in the "my fatal disease is worse than your fatal disease" competition that sometimes appears to be waged here. It is unseemly. Human existence seems to have plenty of stress and pain to go around for all of us.
Aspiration does not necessarily lead to pneumonias. Minor or moderate aspiration can lead to coughing. As long as our cough is strong enough, we will clear enough of what was aspirated to avoid lung infections. Every person (and dog and cat---every mammal) aspirates without known adverse impact during sleep. Mild cranial nerve or oropharyngeal muscle dysfunction from any of myriad causes can cause minor aspiration that the person is quite aware of. A chest xray or other conclusive proof of aspiration doesn't make the fact any more real to the person aspirating.
Again, in this thread, we have persons posting that ALS isn't about impairment---it's about unambiguous inability to do things. That is ultimately undeniable, but it is equally clear that even those posting such definitive pronouncements all experienced something less than full paralysis earlier in their course.
Whatever diagnoses each of us has today, or will have tomorrow, we have much more in common than the differences that separate us.
Have the moderators thought about doing away with the DIHALS category? if we aren't doctors and we don't really make diagnoses and if we are chronically irritated by those who bring questions (and fears and anxiety), maybe matters would be better without these threads?
Everyone's entitled to my own opinion.
T