Waiting for my neighbor to deliver a plate of Thanksgiving day food, I pictured myself as a hungry baby bird, waiting with my mouth open and crying piteously.
Unfortunately, she was, at the same time, experiencing utter oven failure. With a house full of guests, doing their annual Thanksgiving day potluck, her oven had crapped out, and calling to tell me she would be late was, understandably, the last thing on her mind.
As I waited for her, I spiraled emotionally down, finally landing at full-on self-pity. I felt helpless, useless, needy, and ashamed.
When she finally arrived, flustered and apologetic, I muttered my abbreviated sob-story, burst into tears, and greedily ate the food she brought.
The moral of this story is that letting hunger overcome you is one recipe for the blues: you get weak, which leads to frustration, anger, and tears.
What I should’ve done, for her and for me, is have a regular eating schedule, which includes well-planned snacks!
I don’t know if this is relevant to all MSers, but I tend to not think about food until I am hangry. Those around me can tell when I’m overdue for food.
After the assault on my liver, I realized that it now needed my protection. So I have embarked on a mission to consciously try to support it.
Like limiting my use of non-prescription drugs and my alcohol intake, moving more (exercise: isn’t that always the case?), staying hydrated, and eating healthier.
And I started adding Turmeric to my diet.
What is it?
You’ve likely heard about this: the new big thing in the long line of big things. It’s an herb that has been shown to affect inflammation as well as protect against heart disease among other things. Since inflammation is such a problem with MS I paid attention.
It turns out that not only is consuming turmeric one way to combat chronic inflammation, it also has been used in traditional medicine to tone the liver and may even have a “protective effect” on it.
Yay, two for one! So I’m trying to drink turmeric tea regularly and use the spice in cooking, for example.
Where to get
It is used in Indian cooking like yellow curries and is often found in mustards (Some food producers use curcumin, derived from turmeric, as a golden-yellow coloring additive for butter, cheese, canned beverages and other products. When looking for it on the nutrition label under ingredients, look for the name of E100.)
Gulf War illness afflicts 1/3 of the soldiers who returned from that conflict, approx 250,000. Actual cause is still not known but could be related to exposure to the fumes after we blew up the Saran gas tipped bombs from underground bunkers in Iraq. NYT Diagnosis, s1: ep3
I try to eat fresh produce first thing in the morning for no other reason than I felt better doing it as I tried (and failed) the Wahl’s Protocol Diet.
This has you start the day with a fresh kale smoothie (after the overnight “fast” you get from sleeping) to “feed your mitochondria.” This is my compromise.
Right now on Mondays I make a big bowl with a bag of frozen peas, a cup of nuts or mom’s “trail mix” (has nuts, raisins and chocolate!), and whatever leftover salad dressing (I’m using honey-mustard at the moment).
I keep it in the fridge with a spoon and just eat a few spoonfuls first thing in the morning while I’m heating up water for tea or oatmeal. It usually lasts me the week.
Whole Wheat Tortillas
I find tortillas are an easy carb to keep instead of bread for sandwiches. They seem to last longer in the fridge, I get some whole grains in my diet, and they are easy to handle while working at the computer.
I really became a fan when I started eating salad greens wrapped in them. I justify it as an alternative to croutons. See my post about it here: My salad wraps.
Recently I’ve had them with a filling of plain cream cheese, a pinch of crystallized lemon (which i already have) and raisins.
Another time I had some leftover bacon that I stirred into peanut butter and spread into a warm tortilla. Yum!
Finally, this week I had an a-ha moment. It never occurred to me to buy the cheap packages of Top Ramen I so relied upon in college and NOT use the flavor pack! Or to just mix them up into soup. They are so flavorful and salty I viewed them as a bit of a guilty pleasure.
Then I was reading this old blog entry when I got to the part about making stir fry and using ramen noodles. I realized this would solve a problem for me: a shelf stable way to have a quick rice alternative! (Exploding head emoji)
I always think of rice as a quick and easy base for a meal. But it is messy to fix in a microwave and I don’t have space for yet another electric device like a rice cooker. So I asked a caregiver to pick me up some ramen packages this week.
My first meal with them was noodles, frozen broccoli, frozen meatballs, and just a pinch of flavor pack. Genius!
I’m still enjoying microwaved frozen spinach with peanut sauce (but I haven’t yet found a bottled favorite; suggestions welcome!) and microwaved sweet potatoes, skin and all, with peanut butter and cinnamon-sugar.
And my current refreshing favorite is yogurt with added-right-before-eating frozen blueberries. Stay cool, MSers!
Links used above
True Lemon – “True Citrus products are the easiest way to add real, fresh squeezed taste to your water and recipes without piling on the sugar and salt.”
A Slob Comes Clean – “Realistic home management strategies and a message of hope for the hopelessly messy.”
The Wahl’s Protocol – “A guide about how to treat autoimmune conditions using functional medicine and nutrient-rich foods, from a doctor, researcher, and sufferer of progressive multiple sclerosis.”
Hey, did you read the article that hot cocoa made with high-flavonoid chocolate could ease MS fatigue? I have MS fatigue. I like cocoa. This sounds like a recipe for an informal experiment!
The headline of the article I read is Daily Cup of Flavonoid-rich Cocoa May Help Ease MS Fatigue. It details a small trial of 40 MSers, half daily drinking high-flavonoid cocoa made with rice-milk and half drinking low-flavonoid cocoa. (Was the choice of rice-milk just a nod to food allergies?)
Fatigue was measured by a quality-of-life self-report, and fatigability was measured by a six-minute walk test (i.e., how far could a user walk in six minutes).
The trial concluded that the high-flavonoid cocoa was not only linked to heart and gut health but may “improve fatigue and fatigability” in MS.
What is a Flavanoid?
They are a type of plant-based antioxidant that occurs naturally in fruits, vegetables, wine, and tea, and are responsible for the vivid colors found in produce, for example. Studies have suggested that flavonoids have anti-inflammatory and neuroprotective benefits.
One place they are found is in cocoa beans. Usually the cacao tree produces the beans that are then roasted and ground into a paste called the cocoa solids.
Thus, cocoa solids are a good source of flavonoids and the percentage of solids in the product should be listed on the side of a package. You can use this number as a general guide for choosing chocolate made with the highest concentration of solids.
Unsweetened cocoa powder has 88 to 96 percent cocoa solids, for example. Dark chocolate contains 45 to 80 percent, and milk chocolate has only 5 to 7 percent, as the solids are “watered down” with sugar and milk. White chocolate doesn’t contain any.
(Was low-flavonoid cocoa achieved by replacing solids with “artificial flavors”?)
The length of time you expose foods to heat can significantly impact the antioxidant content.
And imagine the roasting process by which the cocoa bean is converted to a cocoa solid. Although roasting is considered a “dry cooking method” and one of the best ways to retain nutrients, it may be reducing antioxident content by as much as 60%.
This was a small study; more research is needed of course. But it seems like a thing that would definitely qualify for a go.fund.me effort. Hot cocoa is pretty much universally liked.
If you don’t like dark-chocolate cocoa, a square from a dark chocolate bar upon waking seems like it would help. If you want a higher flavonoid count, try making your own cocoa with unsweetened cocoa powder.
Maybe it is just a quality-of-life thing. Having a cup of cocoa every day makes you happy. We deserve that.
And even if you only drink milk-chocolate cocoa, as long as there are some solids in it, you are getting a few flavonoids. 🙂
Gout is caused by an overabundance of uric acid (UA) in the blood. This may be brought on by genetic factors, or by “what was once characterized as a “rich man’s diet” (high amounts of meat, seafood, alcohol and sweetened drinks)”.
It is produced by the body and is the main component of urine in both humans and primates. Normally, it is excreted from the body via the kidneys in the urine. But when UA backs up, causing high levels in the blood, it forms crystals in the joints which results in gout.
But these same high UA levels also appear to prevent the development of MS leading to my question: which came first? Does MS prevent us from getting gout? Or does getting gout prevent a person from getting MS?
How Can Knowing This Help Us?
Researchers now know that UA acts as a “free radical” scavenger in the body. For example, as part of basic daily processing, any body produces “highly reactive” molecules that create inflammation and damage nerve fibers. UA acts as an antioxidant and just “mops them up”.
It also has been shown in animal models of MS to reduce inflammatory flare-ups in the brain and slow the passage of inflammatory cells into the central nervous system. It even prevented paralysis in mice. Unfortunately not in humans.
Another recent study found that lower UA was associated with disability progression, as well as cognitive decline.
Even more recently, another study found that “UA levels declined during the course of MS, which suggested that the periodic flare-ups of inflammation that occur in MS may ultimately exhaust the body’s antioxidant reserves.”
So I assume then that keeping UA levels up is a good thing for MSers as well as supporting my antioxidant levels. I will add the forbidden-for-gout foods to my diet to increase my levels of UA. See list here.
That leads to another question I have: since animals generally don’t produce UA because they have an enzyme that breaks it down, we have to artificially induce it in them. So doesn’t this enzyme skew the test results?
Also would UA protect you from getting worse if you already had it? Because right now there is very little that can be done for those of us that have transitioned to secondary-progressive (SPMS).
Obviously I’m not a scientist. But clearly, I think the relationship between UA and brain inflammation should continue to interest scientists.
I pledge to bring it up at my next neurologist appt. at least.
I feel like I just got comfortable with having salad for lunch every day in a wrap. But it’s so cold now! (Ha, OK: February in San Francisco!)
Because I still don’t think of vegetables first when hungry, stuff like this is pleasantly surprising. Like I’ve said (and I shouldn’t be so surprised) I have found eating vegetables every day makes a big difference in my energy.
So I decided to switch for awhile from lettuce to spinach that I can eat warm. Thus I can still cross ‘eat leafy greens daily’ off my to-do list.
Now in my mini kitchen (think small fridge with smaller freezer compartment, electric kettle, and a microwave), I keep a bag of frozen spinach. In the simplest feat, I heat it up and pour bottled peanut sauce on it. Delicious, quick and easy.
Another quick way to use frozen spinach is to toss it into canned soup. Again, no prep.
I imagine you can buy other dark greens like Brussels sprouts, chard, or bok choy already prepped in the freezer section as well. In fact, I have a friend who gets her kale that way which avoids prep for those with limited hand dexterity or a limited kitchen!
My other healthy quick go-to lately is sweet potatoes. I wipe them clean with a wet paper towel, prick several times with a fork, then pop in the microwave for two minutes or more. When done I retrieve and just start eating, skin and all.
“Sweet potatoes are one of the healthiest foods known,” according to some health and wellness gurus. “The skins of sweet potatoes contain a number of additional nutrients, so it is beneficial to eat your sweet potato with the skin.”
It’s a great hand warmer too.
I also have oatmeal every morning with walnuts and dried cranberries.
“Although oatmeal is nutritious, adding other toppings to your oatmeal will balance out your breakfast,” say gurus again. “Stirring dried cranberries and chopped walnuts into your daily oatmeal will add fruit and lean protein — the walnuts — to your breakfast.”
Instead of buying those little packets, I just get the regular canisters of oatmeal, then use an old plastic pudding cup container (light weight, plus portion control) to parcel out the morning’s amount, and add a handful each of walnuts and dried cranberries.
I sprinkle on some coconut sugar (lower glycemic impact), heat water to boiling in my electric kettle, add it and cover the bowl and let it sit for a few minutes. Serving of nuts crossed off the list.
Eating like this crosses things off my daily to-do list: veggies, nuts and whole grains. Check!
Gut bacteria is of growing interest today. It seems like all the hubbub lately is about our “microbiome.”
For MSers, scientists looking specifically at the microbes of MS patients found that we have different microbes than those with a healthy gut, and that dietary alterations can actuate microbial shifts almost overnight. OK, then.
Since increasing the intake of leafy greens is one of the common recommendations for a healthier diet for everyone, I’ll start here. Experts recommend getting at least 2 servings of leafy greens per week, others recommend even more often.
My venture begins
One of the ways I aim to increase my leafy greens intake is to eat salad for lunch. But one problem is that I’m not a salad person (you know, I.don’t.like.salads).
I have especially not been fond of the generic iceberg lettuce, tomato slice, shredded carrot, Italian dressing salads. Oh, and those croutons! Bland, unimaginative, eaten in a rush to get to the main course.
As an aside, I did recently come across the notion that iceberg lettuce has more food value than I thought. Learn more here.
I can use this info in the future. I will file the idea for later.
Happily for now, I have discovered, and now regularly buy, the salad kits from the grocery store produce aisle that contain pre-chopped leafy greens like romaine with kale and even broccoli stems, packages of dried cranberries with pumpkin seeds, or chunks of bacon with sunflower seeds, along with a light poppy seed or mustard dressing.
Instead of croutons
And since I am not a fan of croutons, I decided I could get my carbs by wrapping the salad in one of our left-over tortillas. This one happened to be whole wheat, and my salad wrap was born. For about $4.00 I get two lunches out of one salad kit and am so pleased with this result.
Another aside, a friend with fussy kids told me years ago that he found they would eat anything if it was wrapped in a tortilla. Just sayin’…
At my next appointment, my doctor explained to me that dosage as high as was required for this protocol was not (yet?) available in this country, but taking fistfuls of the lower dose capsules as I was, was doing more harm than good. With it, I was also ingesting more fillers and coatings daily than was safe.
He said if I could find a compounding pharmacy I trusted (referring to a recent incident in SF that had exposed one being run solo by an older pharmacist who had made a life-threatening mix-up), he would certainly write a prescription for me to take there, but he also said that there was still no definitive proof that dosages that high made any difference in the disease.
I decided that improvements I thought ! had to my bladder could just as easily have been psychosomatic and in deference to my mobility, I decided to abandon this test for now.
I’m always hopeful about dietary changes, but I’m also easily discouraged when I can’t see immediate changes. When you think about that for a minute, you recognize how incongruous this is. This has proven to a silent, behind-the-scenes, slow-building disease (in my case, anyway); why should I expect dietary “tweaks” to make a quick, discernible difference?
On the one hand I say “No one cares about you as much as you do” suggesting that you can’t whole-heartedly trust medical advice, that you may be the exception to any rule, so if it doesn’t threaten your life, try whatever makes sense to you.
So ultimately, I rely on how it makes me feel. In this case, the idea sounds good, but it has proven to be difficult to put into practice at this time. Making kale smoothies in my “mini-kitchen” is hard. I know I could set up a process to make it easier, but I guess part of me doesn’t feel it’d be possible to sustain.
I decided to have a kale smoothie whenever I can, but not to go out of my way to insist on it daily for now.
This is still the situation for me. That the jury is still out.
I read a disappointing article here. It reports that some researchers believe that “the drug is nothing more than an ‘expensive, overdosed version of Rituxan’…” That it was approved solely because the original was going off-patent, so the manufacturers raised the dosage level and ‘surprise!’: new test data.
I guess I don’t want to believe that is true, that it is a crass money grab at the expense of patients. But I also recognize that big pharma has every incentive to make money and little incentive to find a cause, much less a cure.
The silver lining that I stumbled across in reading this article is mention of the GRIT Freedom chair! More to come on that!
I’ve started to collect recipes and other hacks for food ideas that can be easily and quickly prepared at your desk, in your dorm room, upstairs from your kitchen… Just sayin’
Notes from my upstairs "office". See my first post here. 😃
I've started to collect recipes and other hacks for food ideas that can be easily and quickly prepared at your desk, in your dorm room, upstairs from your kitchen… Just sayin' I'm considering mug-meals, dorm-room hacks, and the newly discovered Our Favorite 3-Ingredient Recipes section of the Epicurious website.
This week I have discovered that tortillas work better than bread for me and my mini-fridge. Additional packages freeze easier in my tiny freezer compartment. Plus, as a colleague once pointed out to me, kids will eat anything wrapped in a tortilla. I'm hoping that will happen with me, too (maybe even with vegetables or leftovers)!
I've also discovered ultra-thin cheese slices, which I suppose you could do by hand, but I can't anymore. Certainly, this is a safer as well as a more convenient option for me. And it's the taste of real cheese in my tortilla.
I plop a tortilla on a paper plate, add a slice of the ultra-thin cheese, than sprinkle it liberally with some baby spinach and nuke it in the microwave for 1 minute to melt the cheese and wilt the spinach. When done, I roll it up and eat. Easy-peasey and yum!
The other thing I discovered this week is 3-Ingredient Microwave Caramel Sauce, a quick recipe that gives you caramel sauce anytime you want it. At work or in the dorm even, in a mug melt 1 T. butter (or several pats from the cafeteria), then add 2 T. brown sugar (or 3-4 packets natural sugar), 1 T. heavy cream (or 3 mini creamer cups) and a pinch of salt.
Easier still is just to unwrap and microwave a few handfuls of soft caramels with a tiny splash of milk (or 1 mini creamer cup) and microwave on medium power for a few minutes, stirring at 30 second intervals until smooth.
I made some to eat with apple slices. Delicious!
I've been trying to eat oatmeal every morning, buying those little packs of microwave oatmeal. Now that I have a microwave upstairs, and in order to cut costs, I have decided to switch to the regular container of quick-cooking oats. And after some experimentation, I can report that this version works just as well when simply adding boiling water, stirring, covering and letting it sit. I didn't need the microwave to encourage me to switch.
In the article on DIY oatmeal packets, on the MOMables website, the author suggests you cut the regular-sized oatmeal, with some other you have ground to powder in a blender or food-processor, and also add some powdered milk (provides protein), and cinnamon and sugar to taste. From 10 cups oatmeal and 1 cup powdered milk, you can make 20-24 snack-size baggies.
momables.com "…easy recipes, videos, and family friendly meal plans"
Inflammation is one of the body’s responses to injury. It is considered acute (temporary), when you get hurt in sports or have an infection, but chronic (persistent) in a disease like MS.
Inflammation is a "hot" topic right now, pun intended. It's one of the body's responses to injury. It is considered acute (temporary and innate), when you get hurt playing sports or have an infection, but chronic (long-term, persistent and adaptive) in a disease like MS.
Inflammation can become chronic when it stops being an acute response and continues on as a constant low-level physiological response. But the chronic form can also result from, in our case, an autoimmune response when our immune systems mistakenly attack healthy tissue. I rarely get sick and, in fact, tell people I never get a flu shot because my immune system doesn't need any help!
(Momentary digression: Scientists may even specialize in neuroinflammation, inflammation specific to nerve tissue!)
How it presents in MS
Researchers believe that MS begins with inflammation, that infection-fighting white blood cells are triggered by some unknown force to enter the central nervous system (CNS) and attack the nerve cells which results in the inflammatory response.
The attacking white blood cells damage the myelin that protects nerve fibers. Imagine a damaged electrical cord with the sheath ripped open and the wires exposed. This process in the body is called demyelination and wherever it occurs in the brain affects what kind of symptoms the MSer might experience.
In the early stages, an MSer will usually have flare-ups (called exacerbations or relapses) then experience remissions with no symptoms. Hence the term Relapsing-Remitting MS (RRMS). During this time, the nerves will attempt to repair themselves, and may even form new pathways to get around the damaged nerve cells.
Once a diagnosis of multiple sclerosis has been made, disease-modifying drugs (DMD) are often prescribed. One of the things the medication may be used for is to reduce inflammation in the brain.
"In multiple sclerosis (MS), there is good evidence that the inflammatory reaction mediated through adaptive immune responses initiates the disease and drives disease progression together with additional age- and disease-burden-related amplifications factors. Thus, anti-inflammatory or immunomodulatory treatments are effective at least in the early stages of the disease."
On team Detrimental, during a period of neuroinflammation in MS, attacking white blood cells kill glial cells: "Glial cells surround nerve cells and provide support and insulation between them. They keep nerve cells healthy and produce new myelin when it is damaged…" As more and more glial cells are killed, the body becomes less able to keep up with myelin repair. So some of the new research for an MS cure is focused on transporting new glial cells to the site of myelin damage to help encourage rebuilding.
So too, in an attack, increases in many different inflammatory chemicals occur. These inflammatory chemicals may weaken the blood-brain-barrier, which normally tries to block inflammation from getting into the brain. Once this barrier is penetrated, inflammatory chemicals can enter the brain with greater ease.
Researchers have just started to discover other beneficial functions of neuroinflammation in certain diseases. So stay tuned.
Ways to test
If you want to test for the existence of chronic inflammation in your brain, know that there isn’t a "single silver bullet test" for chronic inflammation. But there are a series of tests that might give you an idea of the levels of inflammation in your body.
Another test for chronic inflammation is an inflammatory marker test, the IL-6.
Other common inflammatory markers you can ask your doctor to test for:
– Elevated High Sensitivity C-Reactive Protein (HS-CRP)
– SED Rate
– High levels of Homocysteine
– Elevated Ferritin in the blood
– Elevated HDL
– Elevated Monocytes can be a secondary indicator of inflammation
– Elevated Blood Glucose is a leading indicator of inflammation
What else can I do
Ultimately, many of the questions concerning the causes and effects of chronic inflammation have yet to be proven. What you can do, though, is to avoid certain things that cause inflammation and are already proven unhealthy, like smoking or eating excessive refined white sugar.
But one of the things we do know now is that "(t)he gut, including the small and large intestine, is the largest immune organ in mammals, including people." Read more here.
And according to a recent press release by the National MS Society,"an international team…describes a pathway by which substances in the diet and bacteria in the gut can act to suppress inflammation in the brain of mice with MS-like disease, and also show evidence that this pathway exists in people with MS." The MS Society concludes "This [study] opens up an area that’s largely been unknown until now: how the gut controls brain inflammation.”
So it seems like, at the very least, we should try to keep our guts happy. :)
I found articles that counseled that "by eating a diet rich in fresh fruits and vegetables, whole grains, nuts and seeds, lean proteins, and low-fat dairy, you can reduce inflammation in your body naturally."
Also, "(c)arbohydrates provide glucose, which is your body's main dietary source of energy…Low-glycemic carbs, which have a mild impact on your blood sugar levels, can help reduce inflammation…High-glycemic carbs, on the other hand, can cause blood sugar irregularities and trigger or worsen inflammatory responses."
In the end, I think that if you want to reduce inflammation in your whole body (including your brain), you should make changes to what and how you eat.
Replace refined foods like sugary breakfast cereals with low-glycemic foods like steel-cut oats
Limit dried fruits and canned fruit stored in heavy syrup that are high-glycemic, choose whole, fresh fruits more often
Avoid processed meats, high-fat cheeses, stick margarine, whole milk and commercially-prepared cookies, pastries and crackers.
Try to regularly eat omega-3 fatty acids (prevalent in coldwater fish, such as salmon and mackerel; flaxseeds; and walnuts).
Drink green tea and 1-2 glasses red wine daily.
Take other supplements as you like (Evidence suggests that inflammatory chemicals can be inhibited by natural substances, including resveratrol, St. John’s Wort, fish oil, vitamin D, and alpha lipoic acid).
"Aim for balanced meals and snacks that emphasize nutritious foods. When you do indulge in refined grains, sweets or fatty foods, stick to modest portions." Read whole article here.