Is constant depression/anxiety “normal”

[Samkl]

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

 

[lgelb]

Appetite is subject to the energy expenditure of the disease, as well as the energy in living with immobility and struggling to make use of what is left, including breathing. Likewise, anxiety and depression are natural with the prognosis, but also a consequence of the energy expenditure and pain that every day entails, and often lack of refreshing sleep if positioning and breathing are not optimal.

Speaking of breathing, is he on BiPAP? The work of breathing can sap mental and physical energy that could otherwise go to other things.

Even simple interventions like a better neck rest for a wheelchair or a change in pillow can save energy and improve mood.

And as you pointed out, anxiety and depression can either boost or limit appetite. All of these relate, so I don't think you can separate them.

Whether or not he opts for a feeding tube has to be his conscious choice. Meanwhile, weight loss can limit the procedure's success, so I would encourage an attitude of maintaining weight as a prescription for increasing the odds of a tube's being worth it, if that's how he wants to play it. There are many ways to make puddings, soups, purees and smoothies a weight-gain diet.

The problem with the "eat whatever" philosophy, wherever it comes from and however it's enabled, is that even if he gets a tube, someone else presumably will be responsible for some aspect of tube feeding, and a "however/whenever/whatever" attitude could lead to more weight loss. So that would be my first line of attack -- trying to understand the roots of the fatalism you describe.

Best,
Laurie

 

[Samkl]

Thanks Laurie, you’re a darling. All wonderful advice. He doesn’t need much in the waY of interventions at the moment, except the Bipap, which he has, and a PEG which he is scheduled for in early September. He’s driving, walking etc. I think he still has good function but is poleaxed by anxiety and depression and the fatalism of his household. He started a discussion on ventilation and the response was - but what about quality of life - you’ve got no quality of life now. Having said all this, I’m not in the house, so only have a narrow Interpretation of what’s happening.