This episode, I am going to chat about my favorite topic, food. Now I know some of you thought I was going to say, myself. And a few more of you probably had your mind in the gutter. But the answer is definitely food. I’ve loved food and restaurants my entire life. At first it was the action and romance of restaurants that attracted my attention and not so much the food. Growing up in the 70’s, restaurants weren’t really in the mainstream like they are today. Fast food was still in its growing phase and going to McDonalds etc. was a special treat, not a daily occurrence. I think my first real sit down restaurant experience was a place called Bill Knaps, in Flint Michigan. All I really remember is the building was all white and fancy looking, and we got dressed up. Something like that.
Before I go any further, someone asked me, Scott, what does a podcast about food have to do with ALS? That’s easy. It’s my podcast and I can do whatever I want to. And I’m quickly getting to the point where I can’t eat anymore and it really pisses me off. I’m sure I’m not the only one with ALS that feels this way. So far, for all the things ALS has made me let go, giving up food is pretty tough to accept. At least I have my Tobii and eye gaze to be a surrogate for my lost speech. It’s helping to cushion that a little. But where do I go for a food surrogate? And it’s not just the eating. For me food and dining really, hits all the senses and then some. Every great memory and story I have involves a table surrounded by people I love that are laughing, reminiscing, drinking, playing games, sharing themselves and their life. Tables full of food. Busy kitchens full of energy and emotions. Barstools full and glasses empty. My personal life and professional life. All of that gets me so passionate. How do I find a surrogate for all that? I haven’t really figured anything out yet. Probably isn’t going to happen. That’s tough for me. I think this helps me work through it but it’s a loss on equal par with losing Jennifer. Maybe more sometimes, because I’m knowingly losing myself. Tough. Very tough. Sigh.
Back in April, after my appendectomy, I was so weak I was feeding tube only. I had a few choking episodes and really wasn’t ready to die yet, so I stopped eating food by mouth. Fortunately I’ve done a good job at clawing some functional strength back and am able to eat some softer foods. Now, I can eat one meal by mouth daily as long as I choose the right food and don’t get greedy or stupid. Ya. Right. How’s that working? Hahah. Anyway, I am very aware that my ability to eat probably won’t last much longer so I’m taking advantage while I can. Ok, back to the story.
The restaurant as theater and entertainment was further ingrained in me with visits to places like Casa Bonita and Farrells in Colorado. Benihana and Tony Romas were favorites as well. As I grew up and the 80’s started to become the 80’s , new and fascinating things started making their way into my mouth. We had moved from Flint to Denver and food was noticeably different. Growing up in the Midwest, meat and potatoes was standard but not entirely boring. My grandfather shared his affinity for sausage and sharp and pungent cheese, smoked fish and fine scotch. All of which I still crave today. Colorado though, had flavor and lots of it. Peppers, smoked meats, Latin, southwestern and pacific influences were everywhere. I started trying everything and each new flavor and texture was music for my mouth. Once I started cooking
and learning how to combine and extract flavors, textures and emotions, and get paid for it, I was sold.
Ya know? Hmmmmm?
In 94 I was accepted to the New England Culinary Institute in Burlington Vermont. The greatest culinary school in the world. Unfortunately, it closed a few years ago and the culinary world will never be the same. I’ve been in the restaurant business ever since as a chef, manager and investor but mostly, as a connoisseur. Once my palate expanded to include an affinity for good wine and fine spirits my waistline followed suit. Fat and happy looked good on me. All the time I spent in the gym lifting , boxing, training? I was trying to work off the effects of my passions. My back, chest and shoulders were thick to balance out my belly. Did it work? Haha. Of course it did. Hahaha. Hmmmmm?
Ok. Where am I going with all of this? Good question. Let me check my notes. Haha. Amyotrophic means without nourishment to the muscles. How’s that for irony? A chef, slowly starving to death. And people wonder if I’m going crazy. Hmmmmm. So during my first visit to the UC Davis ALS clinic of excellence, I met with the nutritionist. Do you know what they told me? Don’t lose weight. Ok! I understand that, good. So I pressed for a little more detail and asked, so I can eat anything I want as long as I don’t lose weight? Yes, was the answer. Now, I’m pretty well read on things that affect me but I’m not an expert or a nutritionist. However, this seems a little too simple and didn’t really require a licensed nutritionist so I asked the obvious, can I just eat pizza and beer? The answer wasn’t entirely no, but she stopped short of making it a formal recommendation. Hahahaha. I also asked the same question to the neurologist, as well as the clinic director. When I walked out this is what I left with, don’t lose weight, there are no dietary restrictions but try to eat a lot of salmon blueberries and dark chocolate. That was it. I kid you not. Hmmmmm?
Here is what they should have told me, but first I need to be clear, I’m just some guy with ALS voicing an opinion based on my personal experience. I’m not a doctor, although I have played doctor and I’m madly in love with a nurse. But not my nurse. Well, I suppose she is my nurse since we’re dating but that’s not the point. This is the point. I’m not a doctor. Get it? Got it? Good! Now where was I? Oh yeah. Hmmmmm?
Here is what they should have told me. Inflammation, The gut and nutrition are big deals for pals and you should take it seriously. Especially if you are a faster progression type. What I put in my mouth or feeding tube has a huge impact on my quality of life. There are foods that wreck me. Many of those foods are my absolute favorites too. Of course they are! Does my ALS hate Brussels sprouts and kale? Nope. It hates ice cream and fried chicken. It’s so damn cruel. They say ALS doesn’t affect the mind. That’s not true at all. The mind is tortured repeatedly by the limitless cruelty of what ALS takes from us. Hmmmmm.
One more thing, I do have a feeding tube. I got it about 9 months ago. It was a solid decision and I have no doubt that my current strength and optimism comes directly from it. Ya know?
Don’t lose weight. Ok. But what does that really mean? It means that with a muscle wasting disease, bigger, stronger and fatter people take longer to waste away. ALS makes my body work harder than a healthy person, even sitting still. My muscles are trying to respond to my brain but it’s broken so I have constant fasciculations. I require more calories. Right? Math and common sense. With all of my knowledge and effort, I was probably 235 when I was diagnosed three and a half years ago. I’m now about 195. It’s difficult to get an accurate number without a scale that can handle my wheelchair. My weight has stabilized for the past few months and I’ll take it. Ya know?
It’s pretty difficult to even think about diet and nutrition for a normal person. We all get that. One of the things I did was to estimate my calorie intake and my needs using an app. There are lots of apps to choose from so whatever you like is fine. I knew what my calorie Need was and I added 30%. That’s a lot of food! My first move was to eliminate all processed food. And by all I mean everything, well, except almond m and m’s. Maybe a few other special treats. But just so you know, it’s illegal to judge people with ALS. Pretty sure it’s a felony in California and New York City. Hmmmmm?
Ok, fun fact! My brother just told me that a guy on the ALS titanic knew the ship was sinking and he was going into the water. He wanted his best chance of survival, so he went to the galley and ate as much food as he could. He also drank as much whiskey as he could hold. I’m going to assume that he took the time to get the good stuff from the top shelf, because that’s totally what I would do. Anyway, he eventually ended up in the icy waters and do you know what happened? He survived because his body had the fuel it needed. Yup! Seems totally legit. Just go with it. Ok? Ok!
Anyway, I boosted my calorie intake by adding a tablespoon of fat to every meal. Good fats like olive oil, coconut oil, avocado oil, whole butter, wild caught salmon and bacon. Now, I know some of you might have raised an eyebrow at bacon being on the list. First, feel free to get your own list. Second, vegetarians have created an entire capitalist monstrosity and turned a blind eye to all kinds of different culinary chemistry and voodoo just so they could accomplish one goal. Invent fake bacon. If that doesn’t tell you everything about the goodness of bacon, I don’t know what does. So Bacon stays on the list. Ya know? Damn right you do!
Ok, adding these simple and healthy fats to your meals immediately gives you a calorie boost. Nuts are good too but be careful if you have choking issues. Nobody wants to be the guy who died choking on his nuts. Feel me? The other positive about these fats is it helps ease the sadness of removing dairy from your diet. Yup. Sorry buddy. Dairy has to go. Mostly because it’s a big contributor to mucus in the body. Especially milk and cheap or highly processed dairy. I can occasionally suffer through a high fat ice cream or cheese as a treat but too much will literally choke me. Inflammation is already a problem with ALS. Backing away from these things has improved my swallowing, breathing and sinuses greatly. And last, I’ve never had an allergic reaction to bacon. I’m pretty sure it’s also an aphrodisiac. At least in Oklahoma. Just Saying. Hmmmmm?
Ok, seriously. Getting a feeding tube was probably the best decision I’ve made so far with ALS. And I’ve made a few good ones, thank you very much. Like everyone else I was stressed and overthinking it. Having someone punch a hole in my stomach and having a hose hanging out didn’t seem awesome. Well, it’s not awesome, but it’s still a good thing. Yes it hurt when I first got it but that’s what pain meds are for. By the second day it was much better and after the first week all pain was gone. I can sleep on my side without it bothering me. It does take a little TLC to keep it clean and you don’t want to get an infection. So far it’s been easy. I’ve had it changed once and I’m getting an upgrade this week to something a little more low profile, called a Mickey. Hmmmmm.
My motivations for getting a feeding tube were a few things. I really like being alive. It’s probably my most favorite thing, especially when I have so many awesome people to share it with. Also, I had a few choking episodes that really scared me. Third, I was spending an hour or more at each meal, chewing and swallowing intentionally but consuming less and less. I don’t have that much time to waste and neither do my caregivers. Eating was becoming a chore. And my food was getting cold. Ya know? Hmmmmm?
Actually it was Chris Snow that inspired me. He’s a coach for the Calgary Flames hockey team and has ALS. His wife and family are a bunch of badasses and share their story on social media and a podcast. He posted about getting a tube and I figured if he could do it, I could do it, so I did. Anyway, After getting the tube I committed to it fully. It was an adjustment for everyone but now it’s the easiest thing. Everyone has learned and the fear factor is long gone. My 10 year old niece can feed me and flush my tube. I have put weight back on. I can still eat by mouth but only soft foods with sauce. Breakfast is my go to meal for lots of reasons. Eggs over easy, blueberry pancakes with extra butter and, of course, say it with me now like you mean it, with bacon! Mmmmm! Bacon! Oh. Yeah. My second choice is banana chocolate macadamia nut pancakes. Third? Lasagna. And yes, I know butter is dairy. I have ALS. Rules don’t apply to me, most laws don’t apply to me either. Get over it.
Of course, being the stubborn man that I am, I still try to occasionally eat other things. Sometimes I fail, but if you haven’t figured me out by now, I don’t care if I fail or look foolish. I’ll still sit in a restaurant as long as someone will feed me and hold my straw so I can get to my margarita. Sometimes it’s not pretty but grandpa said those that mind don’t matter, and those who matter, don’t mind. Plus, it probably helps my cause if I’m picking up the tab. Wink wink. Bring my bib and extra napkins and let’s go. Life is for the living and nobody is left behind. Right? Right! Openly defiant. Rebel without a cause. Hmmmmm.
Ok, last tidbit of info before I end. I asked my neurologist for a feeding pump. My formula gets poured in a bag, push the button and forget about it. Beeps when it’s done. This I did for my caregivers. They have lives to live and things to do. I can sit and work and be fed and hydrated in the morning and afternoon, all during office hours. This also leaves my evenings free or whatever I want without worrying about getting my nutrition, medications, being late for happy hour etc. or being rushed. I also get to turn my hydration off a few hours in advance if I need to
so I can try to avoid public bathrooms if I’m out and about. I truly hate that part; navigating restrooms. I’m sure I’m not the only one. Ya know?
And you get a say about what formula and food goes into your body. You are still the boss! Right! Damn right my pals. There are some quality options out there and some not so high quality so do some research and ask the tough questions. Don’t nod and accept what they give you. Take the time to try different brands and see how your body reacts. It takes a few days. What comes out the other end is worth paying attention to too. Poor Digestion and constipation can and will greatly impact your quality of life. I know people who are blending their own food, which is a great idea if you have the ability. I thin my formula with high quality stock like beef, chicken and vegetables. Variety is good and healthy. Give this some extra thought. I think it’s worth your time.
Ok, that’s enough ALS. If you have questions or comments you can find me on Facebook at als uncensored. Until next time, bon appetit! Now, time for a banana split.
