You may need to check with your doctor to see if you have a secondary issue unrelated to your SMA but exasserbated by it. Could be as simple as a food allergy, uti, or resperatory infection. SMA itself is generally not the actual cause of someone suddenly declining in health but it does amplify other issues. I found myself with similar severe breathing issues that seems to now be well treated in my circumstances with over-the-counter allergy medicine.

Am not sure if any of that is helpful, but instead of preparing for the end of life, I find it better with SMA to look at each decline as facing a new kind of life to live. It can be much more difficult to look at it that way, but in truth, there are many people who are perfectly healthy who are not really alive. They are zombies in tombs of their own creation.

Very Beautiful. It is peace place also a lot people smile .A lot of LOVE. Everybody has Compassion.