Recent content by Jay Q

I am 100% feeding tube and have been for several years. We have tried different types of food. Presently pursuing fodmap diet. Also have adjusted timing and am presently pursuing more smaller feedings as opposed to three bigger feedings per day. The fodmap plus smaller meals is more comfortable...

Wondering if anyone has suffered with this problem. For the last three years I have dealt with periodic discharge of mucus separate from toileting. My bowel program is such that I go every morning initiated with Enemeez. While I have dealt with occasional constipation, for the most part I have...

Dave, I don't know how to PM, but I can definitely use those inner canulas. I am trached and use those exact canula. Not sure how to arrange for me to pay for shipping but am happy to do so. I will await your reply. One option is for my wife to venmo you. Her cell phone number is ( removed for...

I was trached in June and spent nine days total in the hospital. The first half was primarily recovery the second was training and adjusting trilogy settings for the right support. Prior to the procedure I was wheelchair bound having lost the strength to walk with a rollator a year before. Prior...

McCamy, thankfully I haven't had Covid, however since I had a supra pubic catheter put in in summer 2019, I have been hospitalized three times with UTIs. Each time there has followed some accelerated loss of function. I didn't have bulbar onset. My losses have been in loss of strength and...

Received second dose of Moderna via Walgreens on February 11. Tier 1b in Louisiana includes home health patients. No significant side effects to speak of. Sore arm and felt a little sluggish yesterday but no other effects. Walgreens website appointment process was a little balky at first, but...

Received my first dose on the 14th through Walgreens. I was able to receive as a result of being a home health patient, not due to having ALS. No side effects aside from a little arm soreness. Curiously, Walgreens website is not letting me schedule second dose. Not sure how that will work.

Wondering whether a thread is worthwhile discussing those who have received vaccine. Including any discussions on effects and discussion whether ALS patients are having impacts from vaccine. Realize it may be a few weeks or months but with UK having started and US starting within days, hopefully...

About ten days ago I received my trach. While post surgery recovery thus far seems to be going fine, I am wondering if anyone has dealt with and found solutions for head and neck leaning to one side due to neck weakness. For me, this issue predates the trach. I spend bulk of day in a recliner...

Thought I'd give a further update since my last one on March 25th. Since then, I would go 3-4 days with relatively normal BMs, mild gas and cramping followed by 2-3 days of liquid and /or small BMs with liquid. Further dialogue with doctor led him to conclude that I may have Irritable Bowel...

Thought I would give an update and again thank all those who replied and gave their thoughts. Two and a half weeks ago I had an abdominal CT which showed a moderate amount of stool in my Ascending colon. With the thought that it was a cause of my issues, my GI doctor prescribed for me the...

While not discussed above, probiotics were added to my daily regimen. Probably helpful but not the solution to my issue. Lately I've been having small soft stool And gas in morning followed by liquid and gas expelled in afternoon and evening. Looks like I will have a CT to further explore...

Sorry, forgot to include that stool sample tested negatively for c. Difficile but positive for Blastocystis for which Flagyl was prescribed and taken.

Shortly following a Christmas visit to the hospital for a UTI, I have developed a very turbulent gut. Initially thought to be a reaction to antibiotics, it has persisted for two months. Finished antibiotics in January. Essentially I have major gas rumblings daily that result in 2-3 toilet...

DeeDee, don't feel bad, I don't mind sharing. When I went to Japan the doctor there talked in terms of an 18 month regimen. I went a year beyond that. While I think it slowed my progression, no way to know for sure, after the 30 months my progression had gotten to the point that I was no...