Dealing with ALS, keeping the weight on

First of all, let me begin by apologizing for the long delay between posts. The progressive loss of function it is been a little more difficult to find my way to the computer. Also this is been causing me to have many more appointments at the house to deal with these issues.

Okay, let's get started…

I've been debating writing a post about diet for some time, but not being a dietitian I was convinced it was appropriate to do so. However, the other day when I was attending a clinical trial I ended up chatting with another gentleman also suffering from ALS and he was having some serious weight loss issues that was concerning him and his family. His progression is different than mine, he is much more bulbar and has much more difficulty speaking and swallowing than I do. He does however retain more strength than I do.

We started talking about the concerns of weight loss and it was very surprised and interested by the fact that my weight has been very stable for a long period of time and wanted to know my "secrets".

So what I post here is by no means extensive, but it is what I'm doing and I'll try to explain a bit about why. Please be sure to exercise your own judgment as weight loss for ALS patients can be quite dangerous and difficult to regain. If you have any doubts, be sure to consult with the nutritionists or a dietitian to make sure these are covered and are following well-informed advice. To begin with let me put these risks and context all begin by telling my first experiences messing with my diet.

Got my diagnosis… Enter panic mode

At about the time I received my diagnosis my average weight was between 180 and 185 pounds. This is a touch heavy for my frame, but bad not that at all. I immediately went into the the panic, realizing that there is no effective treatment and about the only thing that I could have some control of to try to influence things was my diet.

So I immediately went on a hard-core cleansing alkaline diet and at the time I took this intention to nutritionists who helped guide me through some of it. I committed to this diet for several months and did not allow myself any deviation to speak of. During this time I lost around 20 pounds. Getting down to 160 pounds.

This is starting to get too skinny for me, and I was dealing with fatigue and loss of energy quite regularly. After several months, I found that I was not able to slow or halt progression and returned to eating more "normally". By doing so I leave me a fair bit of weight and have stayed stable between 170 and 175 pounds. This is a healthy weight for my stature, even though I am losing muscle and gaining fat.

Once I met with my new doctor at the Montréal Nero, she explained to me that this is a fairly common knee-jerk response. The danger is that once an ALS patient is awake, and do not regain it. They have a longer survivability if they can manage to keep the weight on. I have seen this repeated many times in my reading on the subject.

Consequently, this is because my goal. But I do make it a point of avoiding processed foods, eating healthy and organic wherever possible.

Major difficulties and snacking

As a no longer able to prepare food on my own throughout the day, I'm no longer able to forage for a snack either. This means I have to find a way to eat enough to maintain an appropriate calorie load based around my three meals. Not much else.

Smoothies!

zombie ninja smoothie!

These are the my breakfast staple. I usually make a batch of 3 to 4 pints twice a week. It's just easier to manage this way, rather than making them one by one daily.

I started with the purchase of a ninja blender which is a very powerful and relatively inexpensive one. Costing about $100.What I like about it, is it doesn't blend in quite the same way. It has a bunch of "knives" that's spin around to finely chop the contents of the blender. It does not blend it into a completely smooth purée, leaving it ever so slightly chunky. This is better for digestion.

My ingredients are as follows, all quantities are to your personal tastes:

• frozen berries/fruit
  to ensure vitamin C and a high dose of antioxidants. Most importantly flavor :-)
• bananas
  usually one or two for potassium & vitamin B & consistency
• Goji berries
  considered to be a super food high in antioxidants. I add them dried, they rehydrate in the smoothy.

Meal replacement shakes The following is just my opinion, please consider it accordingly to make your own informed decision. Personally I don't take meal replacement shakes such as boost and ensure as at this point in time I don't feel the need to do so. I am getting abundant nutrition from what I consider to be better, more natural and unprocessed sources from my smoothie. Also, I don't believe it meal replacement shake is the best of ideas. I prefer to regard them more as a meal supplements to ensure that you get your requirement of vitamins and minerals. I also consider these to be highly processed foods, consequently not the best way to get your complete nutrition and maintain a healthy diet. Make an natural smoothie with a wide selection of fruits, veg and grains and I think you'll have more positive results. Finally, there are liquid. Meaning they will pass through your stomach rather quickly. A homemade smoothies such as this has to stay a while to be digested ;-) But by all means, if your doctor recommends it, add it to your diet. But don't rely on it.

• greens
  this is usually I whole bunch of parsley forced detoxifying/cleansing benefits. However I have also used kale and spinach. Both of which are highly nutritious
• nuts & grains
  I added the following for a high dose of omega-3's and protein
• hempseed
  considered a superfood
• Chia seed
  Chia seeds become gelatinous hydrated. Thickening the smoothie
  considered a superfood
• shredded coconut
• almond butter (a lot like peanut butter)
• Greek yogurt 2% or higher
  for fat, probiotics (for digestion) and protein. Also consistency
• almond milk
  I don't do much dairy, never really have.this is a very good substitute high in protein and vitamin D
• Coconut water
  high in electrolytes

Being almost a liquid, I don't want to to pass through my stomach do quickly. So I always eat some bread or something first to help it stay in my stomach a little bit longer.To store them for consumption over the next couple days I use Mason jars in the fridge. Might see just a little bit of discoloration on the top by day three, but they're still good to eat. Also the Chia seeds need some time to become gelatinous.

Optionally you can also add other supplements such as whey protein (bodybuilding supplement). I used to add this early on, but I'm finding I'm getting more than enough protein from all the grains.

Creating monohydrate

You will no doubt find a lot of talk about the supplements and I am quite often experimenting with various supplements to see if I can find benefits. I recently tried playing with something called the Deanna protocol which claims to have seen some positive results. I've not followed strictly, but taking the supplements that I'm able to find and that I believe to be of most benefit. There's been several months and have not seen any results.

the Brand I'm presently taking
by optimum nutrition

That being said, I will discuss in one supplement that they've seen numerous references to and I believe is helping me immensely. And that is creating monohydrate which is a bodybuilding supplement which is intended to promote muscle growth and maintain cellular energy levels.

In my readings I have found numerous reports that creating monohydrate is about as effective as taking riluzole, the only clinically approved ALS drug. When I told my doctor about it, she encouraged me to keep taking. As a matter of fact she instructed me to increase the dosage I was taking.

I'm now taking a full 5 g daily into pills. One in the morning, one in the evening.

If you choose to take creatine monohydrate, be sure to do your homework first and by the good stuff. You can find it pretty easily, but I recommend getting it from a gym in raw form. I don't believe this is a good idea to buy it in fruit punch format as it has all sorts of other flavoring & sweetening additives. I also found the dosage to be lower.

If you're not careful about monitoring the dosage per pill/glass you may find it to be more expensive than it needs to be. That being said, creating monohydrate is not terribly expensive.

When to eat

This is something that I believe is often overlooked, but is in fact quite important. When you choose to eat can have a significant difference in how calories are metabolized by your body. This is something I play with and would encourage you to do the same.

When you go to sleep, your body does not require the same amount of calories. So having something that's higher in calories before going to bed at night is probably not a bad idea. Treat yourself, have a bowl of high-fat Häagen-Dazs ice cream (or the like) shortly before going to bed. Most of these calories will not immediately be allocated for your daily needs. Your body will know to store them as fat for the next day.

I don't do this every night, but like I said treat yourself to a bit of desert before bedtime. If nothing else, take half of your daily creatine monohydrate before bed.

Yes, there will be some debates about having too much bad fats in your diet. Don't get me wrong, you do not want to over do it. But the way I figure it is the immediate concern of losing too much weight is more important than the risk of developing a heart condition 10 to 20 years down the line… As you are no doubt aware ALS is typically terminal and less than five years.

Do however keep in mind eating too much junk food can result in skin conditions. So if you treat yourself a couple nights a week, I figure this is a good balance.

Dealing With Sleepiness & Fatigue

One of the unfortunate symptoms that ALS often provides is fatigue and sleepiness. For me this can often be extremely annoying as it usually starts by a round of pretty intensive yawning, which tends to cause for me some rather painful and unpleasant cramps in my neck and jaw. When these happen, there's nothing I can do about it other than wait for them to go away… At which point I usually yawn a second time which perpetuates more cramping…

It is not always the type of fatigue that makes me feel like I need to take a nap, just drowsy and lower energy for an hour or so. But if those cramps I really want to avoid.

So one option is to take a stimulant to help plow through the fatigue. I've tried a couple different types, and here's what I find works for me:

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Coffee has been a long-standing source of enjoyment for me, as evidenced in one of my first posts on this blog. There's just something about a good strong cup of coffee. I don't know if it's because I spent a number of years working at a volunteer fire station, where hanging around you'd have a cup of coffee and chat with the boys between calls… Or if it's more of a Pavlovian reflex to my very first serious girlfriend who worked at Starbucks (use your imagination).

Obviously, the active ingredient to help get through the fatigue is caffeine. It does give a relatively immediate kick, but it can also leave you with a crash afterwards. Also, you probably don't want to drink too much of it as it is acidic and other some circles of thought, having an acidic pH in your body can contribute to chronic illness.

If nothing else, too much coffee can make your stomach feel acidic and too much coffee as a diuretic which can cause dehydration and possibly leave you with caffeine headaches. So I usually limit my coffee intake to just a couple cups a day of espresso. Usually in the morning.

A couple coffee made his home is relatively inexpensive. However due to my dexterity limitations, I'm using an nespresso machine which puts the cost per espresso at about $.63 Canadian.

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Dealing with this illness review with very few options as there are no treatments. So I like most people in my situation taking huge collection of vitamins trying to slow the progress down anyway I can. One of these that recently added is Pamax ginseng.

Ginseng is another form of stimulants, but it also has antioxidant properties which is supposed to be good for your general health. One of the theories that exists under a more holistic schools thinking is that ALS causes its damage through oxidation and free radicals. Ingesting antioxidants such as ginseng are supposed to help prevent this type of damage.

At the moment I'm taking one tablet with my vitamins and morning, and on occasion to more in the afternoon when I'm having one of my bouts of fatigue. So far I've not found the ginseng terribly effective with the fatigue. Perhaps I'm not taking enough. Also I do find that it is much slower to have an effect than caffeine alternatives. Not to mention that taking ginseng in pill form provides no actual comfort or enjoyment. It's completely tasteless. For some of you dealing with ALS, swallowing can no doubt be a problem. That said these capsules are easy to pop in and add to whatever liquid you are able to consume.

Individually each pill is not very expensive, and prices for ginseng range quite widely. That said, so does the potency. Be sure to check the label.

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There is the huge world of energy drinks out there and there's no way I can, or intended to try all of them. But I have on occasion tried a red bull. It's essentially a form of soda, with a sweet and bitter taste. It tastes okay, not great my opinion but okay. The nice thing about over coffee, this is something that you drink cold making it much more appropriate on hot days.

Red bull does have some interesting ingredients, and you can read about them in more detail here. Here are a few points of interest:

Caffeine: Again would give you the kick and has a pretty immediate effect.

B vitamins: this is something that's supposed to be good and nourishing for your nervous system. It also gives a little more staying power to the levels of energy. As a matter of fact my doctor has even prescribed to me vitamin B supplements.

Inositol: A carbohydrate found in animal muscle reportedly can significantly reduces depression and panic attacks among others. However the dosage is apparently insufficient.

Personally, I don't drink much in the way of soda these days. So I tend not to drink red bull often. The times I have had it, I have noticed it to be pretty quickly effective, lasts for a reasonable period of time and did not give me the crash afterwards.

Cost about $2 Canadian per can.

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I originally started taking the occasional five hour energy after reading about it from another patient with ALS in the patient's like me forms. For the moment I find this is the most effective form. However I will say it energy doesn't seem to last quite five hours. Nonetheless it is plenty sufficient to get me through the around the fatigue.

There's a number of flavors, but here in Montréal I've only found two. Orange and Berry. For the orange, I don't particularly like the taste. But then again that's not why I'm drinking it. It will deliver pinch. I find the orange tastes excessively artificial for my liking. However, the Berry blend I find is actually quite good.

It's has some ingredients in common with red bull such as caffeine and vitamin B blend. It does however have a much higher concentration vitamin B. You can read more about the ingredients here. Again, here is some of the ingredients of note.

Vitamin B concentration: These levels are quite high and can result in the niacin flush. This is also what gives father energy some of its staying power. As part of this is the folic acid, which is another supplement my doctor has also prescribed. Folic acid, or folate, helps produce and maintain new cells in our bodies.

Caffeine: again, what gives it its immediate kick

Glucuronolactone: It has been shown to reduce sleepiness(see the footnote, not evaluated statement by FDA).

Phenylalanine:  sold as a dietary supplement to combat pain and depression. It actually works inside the body with tyrosine to produce dopamine, adrenaline, and build skin pigmentation.

When I'm really having a bout of fatigue, and absolutely need to stop yawning I find five hour energy is the most immediately effective. The nice thing is it's a very small container, making it very easily portable. So I'm out with the wife and kid, we can usually keep one with us. Now that being said, the way it's packaged is impossible for me to open on my own. It is covered in a vacuum sealed plastic buckle up and over the lid. This is impossible for me to remove on my own.

Each small bottle costs between $2 and $2.50 Canadian.

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Now, before running out and buying a bunch of energy drinks to solve all your ALS related energy problems. Keep in mind that they do come with a health warning and can have some unpleasant/undesired side effects. Please read this link for more information.

In my case, I have found that excessive energy drinks such as these can sometimes promote the feeling of anxiety and from physical standpoint aggravate my fasiculations. Making me twitch a whole lot more. Which intern makes me anxious.

So please keep this in mind, and consume these types of drinks sparingly. Not to mention, to consider the time of day before taking any it is. Having a five hour energy at 10 o'clock at night might not be in your best interest ;-)