In my pre-ALS life I ate well. Not always healthy, but well. I love a good cheese steak. New York pizza is the best (sorry Chicago, but your hot dogs rock!). There's an incredible steak and seafood restaurant in King of Prussia, PA that I used to visit on every trip. And I'd walk barefoot on broken glass for a good cheeseburger and a chocolate shake.
When I was home, I loved to cook. And I always tried to cook healthy. Cooking Light magazine was always on the countertop (ask Linda about the microwave chocolate pudding recipe). Crab cakes, Filet Mignon, Smoked BBQ Ribs, broiled Haddock, massive Saturday breakfast omelettes, beef stew and chili. I loved cooking.
In my post-ALS world, based on discussions with my ALS clinic team, I focused on fat and plumping up. Mass General had done a study that showed patients with ALS survived longer if they kept or even increased their weight. So, the double cheeseburger became (and remains) my best friend.
It wasn't until I got my feeding tube in January of 2014 that we came to the realization that what goes in your pie hole (or MIC-KEY button) matters. For regular readers of this blog I'll spare you from repeating the story. The bottom line is, we discovered the formula I had been prescribed was junk. Corn syrup, non-organic soy milk, more forms of sugars to serve as a cheap source of carbohydrates and man made vitamins. Sugar isn't good for you...and it's everywhere.
I'm by no means a card carrying vegan but, for those who don't believe me consider this:
Start with some basic metric conversion. 4 grams equals 1 teaspoon of granulated sugar. There are 13 grams of sugar in an 8 ounce cup of low fat milk. So that glass of milk you just served your 8 year old had the equivalent of 3.25 teaspoons of sugar in it. And no one is saying you shouldn't drink milk.
It gets better. Applesauce is good, right? A small serving cup of Mott's applesauce contains 23 grams of sugar. That's 5.75 teaspoons of sugar. Kellogg’s Smart Start Strong Heart, Toasted Oat sounds healthy. A 1 1/4 cup serving (and who eats that little?) has 17 grams of sugar sugar or 4.25 teaspoons (and that's if you don't reach for the sugar bowl). I know! Yogurt! It comes in small containers and is definitely healthy. Let's look at a 6 ounce container of Yoplait Thick & Creamy Yogurt, Strawberry. Hmm...28 grams of sugar. Teaspoon equivalent: 7 teaspoons.*
Let's go get a burger. 2.5 teaspoons of sugar in a Quarter Pounder with cheese. 19.25 in your chocolate shake (no surprise). The good news is there's no sugar in the fries, so supersize it!**
Yes folks, sugar is everywhere. Obesity and diabetes are on the rise. Think I'm just a nut? Check out this article from Bloomberg titled "Here’s how much sugar consumption is hurting the global economy", about a recent report from Morgan Stanley analysts. An excerpt:
"Sugar may not be so sweet when it comes to the effects on the world economy.
That’s the conclusion of Morgan Stanley analysts in a new research report. They say that because health is a key driver of economic growth, rising diabetes and obesity rates cloud the outlook in both emerging markets and developed economies. Sugar consumption is one major culprit behind such health problems — making it a liability for global output. "
Morgan Stanley doesn't have an environmental left wing whacko agenda. They're money guys. Their analysts, and I've met some, do deep research before they publish a report. If they are recognizing there's a sugar related health problem, it's real.
The science is in folks. Sugar is a time bomb we all ingest in delicious, bite sized morsels manufactured by a food industry who knows our inner most gastronomic desires. They spend millions on product research to put the right amount of sugar in processed foods so we crave more. They call it "the bliss point".
Which brings us back full circle to ALS and the millions of people around the world who get their nutrition via feeding tubes. It's become accepted as fact that the formulas which Nestlé, Abbott and others make with cheap ingredients for incredibly high profit margins is a substitute for real food.
And why not? Their marketing machines have convinced clinicians across all disciplines that it a viable substitute. For institutional use it has a long shelf life. It's easy to administer for front line staff.
But is it the right thing to do, especially for our sick and elderly? Linda says, and she's correct, if she called our doctor and said she was going to start feeding me Karo syrup, soy milk, cane sugar and liquid children's vitamins he would call social services.
Patients need three things when it comes to enteral nutrition:
- They need education on nutrition. Before we did our research, we were blissfully ignorant.
- They need full disclosure of what is in their new source of nutrition.
- They need choice. There are options available from blenderizing your own meals at home to prepared, organic whole foods formulas like Liquid Hope.
For ALS patients, nutrition matters. Please do your homework.