by Eating and drinking is another area that becomes more and more challenging as time goes on. Julie has been very helpful here. As my fingers lost agility, Julie would find products to allow me to be independent longer. Items like large handled utensils and bowls built into a place mat with a lip to help with scooping. As my hand strength wavered and could no longer pick up a cup, Mark helped me with different versions of holders. He found a great cup holder which clamped to my chair and worked great. Eventually I was no longer able to use a straw so we found automatic cups to use. Somewhat pricey though but do work well.
Any solid food I eat now has to be fed to me and any drinks have to be administered by someone using the cup I mentioned. Solid food is getting too risky though because of chances for choking. So next thing Julie does is make me smoothies and then uses a syringe to administer. She is blending more solid food for me and spoon feeding me but as swallowing becomes more difficult a feeding tube will be in order. My surgery to install a tube was in November 2020. My surgeon told me that if I had waited longer he would not have been able to do surgery due to my stomach migrating up too close to my diaphragm. So we are using tube more and even at night with a pump. As far as what you can put in tube, think of it as another mouth. I opt for the formula the VA offers and feed over night using the pump so by morning I have consumed 1900 calories. You may want to have the feeding tube installed sooner than later since weight loss is a given as disease progresses. Also, with constipation becoming more of an issue, Julie includes a daily dose of Mirilax in my smoothie.
I hope to inform folks on my experience as one who has ALS but also offer hope to those have the disease. Your life is not over but a good support system is needed, like family and the Veterans Administration for me but also MDA and organizations like Team Gleason. Please contact me at joelanham53@gmail.com if you have questions.