I thought this was an excellent portrayal of all things related to feeding tubes: how it IS truly a personal decision, the importance of getting it early due to pALS declining respiratory function and weight loss, the necessity to be an advocate for your pALS when the procedure is done because it’s very true, not enough medical staff understand ALS. My hubby was not treated well both times (first time via endoscopy was not successful because his O2 went too low, maybe due to being fully horizontal. Second time around the feeding tube was successfully placed via interventional radiology, however they didn’t tell us until AFTERWARDS that it was a temporary tube, and that he needed to come back in 6-8 weeks for a more permanent tube. Understandably, he was very angry saying he refused to do it again. So, he actually lived for 5 months with the “temporary” tube. I was just very diligent about keeping it flushed and Clean around the wound site). But both times he said that the way they moved him onto the surgical table was rough and indicated that they didn’t know about ALS. They did not hold his head up for him as they moved him and were not careful with his arms/shoulders which were both somewhat “locked up” due to frozen shoulder. Anyway, like the article states, anticipate that the medical support team are clueless about ALS. My hubby did not want to get the feeding tube at first; over time I convinced him that it would prolong his life and improve his quality of life, so I think he did it for me. In the end though, I think he was glad. It did give us more time together and I believe it slowed down his progression.
My State: