“ALS Things That Make You Say Hmmm!” Chapter 116
I like, no... I love being an ALS advocate and helping others understand this diagnosis. When faced with any disease, reading about it online can be a nightmare. The vast number of websites, people, and scammers can make a person feel like a thousand hands are reaching out to help them, only to end up feeling lonelier than ever. When someone reaches out to me, I make sure to give open and honest conversation in order to help where I can.
Today, I was sitting around (something I am really good at lately) thinking about what to write about this week. Then it hit me, I should just answer some questions. I’ve done this before, but there are always new ones to address.
What about burping? Is that an issue with late stage ALS?
I haven’t burped normally since the trake. Mostly because I don’t take in air while eating or have carbonated foods. When I do feel bloated, I take Pepto to help. Occasionally, however, I do burp through my feeding tube when air gets in. The port is opened and someone pushes on my stomach in order to release air. Tip: careful where you point the hose, because I've been known to shoot liquid over a foot away.
Do you ever get an urge to cough, but can’t, due to the ALS? And if so, what do you do at that point? Do you request for someone to use the cough assist machine?
Yes, when I feel like coughing (which is very seldom) I use the cough assist. I don’t know why I don’t cough or gag more often, but I believe it’s because I have Bulbar ALS, which affects my reflexes. My caregivers can literally push the suction hose to the back of my throat and nothing happens. Hell, they even sucked up my uvula before and I didn't choke. I have read others, mostly PALS with limb onset, have a hard time with choking and can’t clear it on their own.
Any tips on how to keep a positive mindset?
This is not easy, but to be honest, once I got all of my affairs in order and found God, I was not scared anymore. Now every day is either a good day or a great day. But keep in mind that I am 4 years into this. It took time. There was a big relief when I had a final diagnosis and told my family and friends. Before then I'd felt as if I was keeping a secret and I had to get it out. Now the more I talk about it the better I feel.
Do you message/text with other people that have ALS?
Yes. When I started my journey, I asked God to let me help others directly or indirectly. Every week, when someone reaches out with a comment or DM, I feel blessed. I am also a part of the I Am ALS Mentor Program and Veterans Counsel. I take writing classes with the ALS Association Creative Pursuits program, and always look for other opportunities that allow me to meet other PALS/CALS. If you are a PALS/CALS, you can sign up for classes too. There are many types of classes, and all are free.
What do you miss?
There I was in Venice, Italy, teaching a class when a very important topic came up. “Where can I find good Gelato?” A student stood and said, “I know where to find the best Gelato in all of Venice!” He gave me directions and after dinner at a fine Italian restaurant where I finished up Veal Masala over thin spaghetti, the waiter asked “Dessert?” “Not tonight buddy, I have a mission and that’s Gelato.” “Oh! You wanna Ge-lato. I tell you where-a the best-a Ge-lato is-a.” With two recommendations I had to go with the waiter’s suggestion. Once I found the location I perused my options. The young lady behind the counter allowed me to have some samples when she said, “Try this one it’s new. Vanilla, with dark chocolate chunks and Jack Daniel’s BBQ sauce.” “Yup,” I said “let’s do it.” Can I tell you, it was surprisingly good and the waiter was right. The vanilla gelato was smooth and the sweetness perfect against the dark chocolate chunks covered in tangy BBQ sauce perfectly seasoned with hot peppers. Thinking about it makes me want to check my battery level and wheel it over there.
It’s my hope that answering the questions brought some light on ALS and helped answer questions you might have for you or a loved one. I am an open book and my pages full. Ask me anything and let me be your Google.
Love and Blessings.
I love to read your comments and hear your stories, so please rate my posts and leave a comment below.
That Gelato looks sooo goood! I love when you add photos of your memories , brings the post to live 😩 when I read “Jack Daniel’s” I was like mmmmm whiskey…. 🥃 then realized BBQ Sauceee? ewww hahaha but If I can add Tajín and chamoy on fruits then I would 100% try Jack Daniel’s BBQ sauce on gelato 👌🏼
David, you are a Godsend! I first met you at the Sgt. Audie Murphy club gathering (FLW) and have known you ever since to be a helpful and selfless leader. You are sill that today! God bless you, as you continue to help other in new ways. I love you buddy!
Thank you for doing Q&A today! It's always refreshing to hear your point-blank answers to any question.
I've been known to burp my husband's feeding tube on occasion; however, before he feels it in his stomach, it's likely to show up in his ballooning high-output ostomy bag. Burping that thing is dangerous, as it's been known to spit a long way😂
We use the cough assist multiple times daily. Some days it's not very productive, and other days it makes a flood of mucous (and even mucous plugs) for suctioning. Writing this, it does sound gross, but it's just a fact of life for ALS patients and caregivers.
Keep up the good work and the battle-trench tales of an ALS…
I promised myself I would be better this year at connecting with you more often. David thank you for doing this blog. It allows me/us to be a part of your world and understand everything you experience. Not everyone would be such an open book.