Tuesday, March 24, 2015

Nutrition and ALS: An Interesting Follow Up

Two days ago I posted a blog about sugar. It's been hand down our most read, shared, retweeted and talked about article to date.

This morning, before Linda and I got mired in yet more paperwork, I stumbled upon this article on the Harvard Health Publications website titled "Supplemental nutrition drinks: help or hype?"*

While the article addresses supplement drinks targeted for the broader market, it also clearly addresses formulas intended for specific medical needs including those who can't swallow. In my time chatting with others about feeding tube formulas Boost and Ensure have been on the list for some while Jevity and Osmolite, designed primarily for use with feeding tubes are also mentioned. I found these two paragraphs of particular interest (emphasis added):

"Supplemental nutrition shakes contain more than just healthy ingredients. “You may be 
getting more sugar than any of the other ingredients,” says Stacey Nelson, a dietitian from Harvard-affiliated Massachusetts General Hospital. “But if you can’t eat and that’s the only food that’s palatable, it’s better to get the calories.” Dr. Salamon agrees. “In that case, substituting one meal a day with a drink won’t hurt.” Both experts warn that people who can still eat may be risking too many extra calories by consuming the drinks. That can lead to weight gain and a list of complications associated with obesity, such as high blood pressure and diabetes.

Equally concerning is that nutrition in a can isn't the same as nutrition from food. "Even if they're fortified, they still won't contain all of the nutrients a whole food source would," says Nelson. Dr. Salamon questions the types of vitamins and dietary supplements in the drinks. For example, some include selenium. "It's not proved that we need selenium," she says."

Wait...we're talking about the same formulas and supplement drinks millions of Americans on feeding tubes are using as their primary source of nutrition, right? So, how is it we're cautioning people to limit their use of these products because of the risk of obesity and diabetes while sending new feeding tube patients away with cases of the same formulas as their primary source of nutrition?

The saving grace, if there is one, is this article dates back to 2013, before (at least I was aware of) any widespread discussion of this topic in the ALS community.

Yet, the question remains: Why are feeding artificial, sugar laden formulas to the sick, frail and elderly? The cynic (and business person) in me says "Follow the money!". And that default thinking may be correct. The financial website Research and Markets on May 11th of this year issued a report titled "Clinical Nutrition Products - Global Strategic Business Report 2015: Rising Incidence of Chronic Diseases to Kindle Markets".**  Like the Morgan Stanley report in my last article, this points to a global investment opportunity in, among other areas, enteral nutrition.

What incentive is there for a Nestlé or an Abbott (and I pick on them because they are market leaders) to provide "food as medicine"? The formulas they make are cheap, high margin products. , organic, non-GMO whole food formulas, like Liquid Hope, require a more thoughtful, compassionate and patient centered approach. An approach, much like the Green House model we will use in our ALS/MS Residence that places the patient first.

Let's hope that families, advocates, patients and the handful of clinicians who have already recognized the importance of nutrition for healing, will initiate a grass roots effort to educate Doctors, Nurses, Nutritionists, Dietitians and even Legislators. To demand choice. To demand information. To demand sustenance for the weakest among us.

But people need to care. People need to do the tough work of educating themselves, of questioning your Doctor. The uncomfortable work of saying "No. There's a better way."

Do the work. Reap the reward.

*Harvard Publications Article: http://www.health.harvard.edu/staying-healthy/supplemental-nutrition-drinks-help-or-hype

**Research and Markets: https://globenewswire.com/news-release/2015/03/11/714246/0/en/Clinical-Nutrition-Products-Global-Strategic-Business-Report-2015-Rising-Incidence-of-Chronic-Diseases-to-Kindle-Market-Growth.html?print=1

Sunday, March 22, 2015

Nutrition and ALS: What's IN the Calories Count

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.

**Source: McDonalds website http://www.mcdonalds.com/us/en/food.html

Friday, March 13, 2015

Perspective: An Observation

"Tragedy is when I cut my finger. Comedy is when you walk into an open sewer and die." - Mel Brooks

Having ALS certainly doesn't give me a corner on perspective. But, over the seven plus years since my diagnosis, I've met many people who have been told they were going to die. Some are still here, others have, in fact, passed on. I can guarantee you that for each of them, a "terminal" diagnosis was a perspective changing event.

How receiving that news changes one's perspective varies by individual. Nature, nurture, life experience, training, personality, faith (or lack of), religion (different than faith), social status, etc., all play a role in shaping our individual perspective. Some people become more resilient, some crumble. Some accept the news with grace, go about getting their affairs in order, some begin bull riding, cliff diving and savoring life. Still others just take each day as it comes. 

Social media has become a wonderful platform for an increasingly self indulgent world. Sure, it can keep friends and relatives separated by distance more connected. Just this morning I sent a birthday greeting to my Cousin in Indiana. However, more and more often, social media has become a platform for the emotionally needy to whine. There. I said it. Get a grip, folks. More accurately, get some perspective.

We're whining about the snow, the cold weather, our kids, our spouse, our best friend, our job, the President and how tired we are. Meanwhile, in the Middle East, a 6 year old girl is having her head cut off by a stranger, there are people in Africa dying of HIV and there's a homeless guy in New York City who would take your "crappy" job in a heartbeat. There are people in North Korea picking thru garbage dumps for food because their "President" isn't held accountable to anyone. There's a 10 year old girl who has been sold into the sex trade somewhere.

When I see social media whiners, it makes me sad - because it usually comes from good people. People who are better than what they are Tweeting, positing or Instagramming. Social media has made it far too easy to thoughtlessly tap out our emotions on our phones and hit "Send". I can't help but believe how often we'd post differently if there was an hour delay before our posts went through, followed by a display of what we wrote with an "Are you sure you want to post this?" pop up.

What a world we could make if, for every selfie, for every whining post about what previous generations simply considered to be the trivialities of life, we substituted a genuine act of kindness for others. If we focused on others instead of ourselves. 

Everyone's entitled to a bad day. No question about it. But do we really need to share every little bump in the road with the world? Norman Vincent Peale said: "The more you lose yourself in something bigger than yourself, the more energy you will have." I don't now about you, but I can always use more energy. The question is, how do we choose to spend it? Whining, or lifting someone else up?

I joked with our visiting nurse last week that I was going to have bumper stickers made that read: "Perspective - Get Some". I think I really will.

Now, go surprise somebody with an act of random, unexpected kindness. Guaranteed, you won't feel like complaining after.

Monday, March 2, 2015

ALS: No a Time for Fear or Small Thinking


We just finished our first Board Meeting of the year for the foundation. It was a bit overdue. We had so much to discuss that we sometimes strayed off topic and didn't really cover everything we should. We all agreed a second meeting in the next few weeks is due. Sitting here with some music playing, it occurred that one thing was clear: this is a passionate group of people.

In my work life, I insisted on two things above all else: passion and commitment. Those two traits trump knowledge, money or even talent. Passion and commitment are the crucible in which big dreams come to life.

I speak of big dreams because there are those who say (and more often it's unspoken, but no less palpable) that our vision to build a world class ALS/MS Residence is impossible. I call that "small thinking". 

Big thinking was never discussed in the house where I grew up. It went unsaid that, if you want to do something, just do it (I think Nike stole that from my Dad). The parallel topic that was discussed was the value of hard work to achieve your goal. "Nothing worth having comes easy." was a phrase I heard more than once. Dad would have loved the New England Patriots them of "Do Your Job" this year. I can honestly say I was never discouraged from doing anything. My parents weren't afraid to let me fail. My folks struck the perfect balance between being supportive and letting us learn the lessons of failure.

Families with ALS know this as soon as they hear the diagnosis fall from their physician's mouth. Fear isn't an option, and neither is small thinking. That's not to say the fear isn't real, you you either give in to it or you saddle up for the fight of your life - literally.

Two comrades in arms were in the hospital recently, fighting through tough different battles against our common enemy. Steve Gleason and Pete Frates, without question two of the highest visibility and most effective advocates in the ALS community today, have both demonstrated passion and commitment from the day of their diagnosis. Some might say it's because they were both high performance athletes but we know people fighting ALS who have never stepped foot on a field of play.

What binds the ALS community together is passion and commitment. There's a perspective and a focus shift that happens when a family hears "Dad has ALS, and we have no cure". At that moment, whether they realize it or not, they've become part of a larger family. At that moment, they become fearful, or fearless. At that moment, their world changes - forever.

It's no coincidence that the vast majority of fund raising for A!S is done by family and friends of the afflicted. And in the case of Pete Frates, Steve Gleason, Augie Nieto and countless others, the afflicted themselves. They share a passion that no families should be forced to endure this disease.

At our Board Meeting, we discussed the need for passion and commitment on our team. There are many smart, experienced people we could ask to be on the Board. But it only works if they have a real connection to ALS or MS or otherwise stared death in the face. If they've experienced that perspective shift. 

So...we're always on the hunt for passionate people. Our Advisory Panel,has been very helpful as have some unofficial advisors we know through the amazing ALS Facebook community. They all share the passion and commitment to help us achieve our goal. 

Fear? Not an option for us. Small thinking? No thank you. We dream big around here. We live in a world where miracles happen and dreams come true.

Want to help us too? Drop us a line at: info@hope-JG.org.