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 ;-)

Accessible Plates

One of the projects I've been working on for some time with my occupational therapist was to find some decent plates that worked well for me. This has, surprisingly been far more difficult than one would've expected.

Stay still dammit! I'm trying to eat!

Sure, there is an entire world of disability/accessible plates and bowls. But finding good ones that I liked was not easy. Most of what's out there is either small, made of plastic or not that beneficial and really makes me feel disabled. I still have a very healthy appetite and eat a large portion, so small plates don't work for me. Plastic plates are light and the slide all over the place and I already have enough problems trying to get food in my face. I don't need to chase it down anymore than I already do.

Probably about a year ago when we first started looking at better plates and bowls for me, my occupational therapist gave me a couple samples to try. One that particularly liked was steelite plate. So after using this plate for a few months and having increasing difficulties with regular plates, I decided that I would like to get some more of these plates rather than just one. I asked my occupational therapist for more.She told me that the only had one on hand, and couldn't remember where it came from. Nonetheless I said these are the ones I wanted.

Over the course of several months I was repeatedly told that she was unable to find them and that they were likely discontinued. So one day about two months ago she when asked about the progress on the plates, she explains this again and she says that she will keep looking on her side but that I could also go try a few stores but that she would need a moment to call one of her colleagues to get the names of the stores.

"No problem I say" after all I expect the names of specialty.

She makes a phone call to her coworker speech from in order to and comes back with a list of stores. I wait patiently while she's on the phone, she comes back with:  Bowering, Sears, the Bay, the linen chest, Stokes and of course… Canadian tire. Yes, you read that right. A list of the most common places to buy plates in Canada, possibly even North America.

While I stare at her for a moment completely dumbfounded she grabs a piece of paper and proceeds to write the stores down for me. Okay, now she's insulting my intelligence. I honestly felt like I'd walked into a specialty bookstore asked for the first edition copy of Don Quixote and the reply is "have you tried the public library?" I come to see these experts in the hopes that they have access to resources that I do not have in order to expedite the process in acquiring the adaptations and devices that they need.

Not to mention that having ALS means I don't have the mobility, energy nor time to race all over town to track this down myself. It was my understanding that's why we have an occupational therapist as rehabilitation facility.

AAAAAANYWAY… Enough venting about that.

This frustration sent me on an intranet quest. Through the appropriate use of Google I was able to quickly find a few suppliers. The first ones were unfortunately all in the UK and Europe. They were willing to ship to me in order, but because of the distances involved the order would've had to be a little larger than I had hoped and the shipping costs were, well. Expensive. Here's a couple of the links I found:

• http://www.completecareshop.co.uk/disability-elderly-aid/3208/steelite_plate_-_medium.html
• http://www.nrs-uk.co.uk/steelite-plate.html

Through a few more manipulations of Google, I contacted the North American steelite supplier, a gentleman named Gary who was extremely kind and helpful. They went on to explain that these plates are not available through the distributor as individual units. However they can be ordered by the case. It turns out a case is not terribly unreasonable, especially if you can share the order with someone. The plates come in two sizes. 8 1/2 inch and 10 a quarter inch.

Through discussions with the distributor, here's what I was able to acquire:

What I particularly like about these plates is that they are ceramic like any other plate. Because of this I don't feel like I'm using specialty plates that often. They're heavy and durable. From what I understand they were actually intended for old age homes. They have a nice gently curved been raised age that's not too high and works very well for helping push the food back onto your fork or spoon.

At first, I wasn't sure I'd find a whole bunch of benefit to having plates of different sizes. But I actually do. Some meals are much easier to manage and the smaller plate. For example when eating pasta, I'm less likely to drag my knock on us through my food to push up against the far side of the plate.

Also, one of the great things about having plates of different sizes and colors like this is a help immensely with our coping strategy for a three-year-old son. From time to time we take one of the smaller plates for him two years so he can now have a big boy plate "just like dad" we are hoping to take some of the fear out of the situation with this. He is old enough that he starting to ask about questions.

The coffee mug is a great idea as well, having handles on both sides. It weighs about the same as any other coffee cup, but unfortunately due to the specifics of how my hands are starting to flatten out and deform this cup is proving not be as beneficial as I had hoped. I will say however it is easier for me to transfer coffee from the kitchen to where I sit. Unfortunately it's not really much easier to drink from for me. Mind you that's about the same for any cup these days, I'm having to use a straw a lot.

Yup! Great product.

On the whole, I'm very pleased with these plates and the cup. They're the best thing I found for me to date. There are little bit hard to come by, but worth the effort. You can contact the gentleman who helped me here Gary gbennington@steelite-canada.com or you can go through their corporate site which is where I started.

You can view the whole line of the Rio steelite products here in their brochure.

A Little More Humor…

Imperial versus Metric…

Every two weeks I get some help to come to the house to help to prepare some meals in this usually works out okay. But once in a while there are some things that just don't seem to be understood… While making a particularly good ratatouille, here's a sample of the conversation I had the other day:

Me: "we need to slice all the vegetables to be about 3 mm thick."

Helper: places the knife on the vegetable and shows me where she thinks to cut, which is about a centimeter. Asking "like this?"

Me: "no, recipe calls for about 3 mm that's about a centimeter"

Helper: "I don't know what a centimeters…"

Me: thinking to myself, okay she must know the Imperial system. "Recipe actually specifies 1/16 of an inch" (okay, I know that's about half the size of 3 mm…)

Helper: "oh, like this then?" She places the knife on the vegetable ready to cut about a quarter of an inch thick.

Me: "no, the recipe says 1/16 of an inch"

Helper: she repositions the knife again, this time to about half an inch. "How about this?"

Me:… Okay, she apparently doesn't know the Imperial system either…
/FacePalm

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Battling with the Car Seat…

Every weekday, I have a helper come by the house to assist me in getting my son from daycare. I can still drive there and back, but I have difficulty getting him ready and I cannot manage the car seat. I don't know what it is, but there seems to be an ongoing battle with my child's car seat when we pick him up from daycare. Helpers often just don't seem to understand how it works. 

The following is an actual conversation that happened, you can pass your own judgment…

Me: I sit down in the driver seat waiting for my helper to attach my son. I mistakenly assume he knows what he's doing.

Helper: fumbling with the straps for a few minutes he actually says to me "well, I can't figure this out. I'll just hold him in the car seat."

Me: completely dumbfounded I replied "the hell you will. We may only be going a few blocks away, but you will do it up properly"

My New Spoon

It's been an ongoing project for me for a long time now to figure out better ways of getting food from my plate into my face hole. Fortunately, chewing and swallowing it is not a problem for me yet. But getting the food there often is.

This is where caused many explorations into more accessible plates and utensils. Some of which work better than others. Some of which only work for a period of time. I've gone through lots of different cutlery by now and what is commonly accessible to the disabled doesn't really seem to be suiting my correct at this point in time. They seem to be either too large, unbalanced or otherwise unwieldy…

the people at my rehab facility had said they'd never seen
or thought of a design like this

So I've created my own adaptation to a spoon. Check it out:

This spoon is a fairly typical handy accessible spoon which was provided to me by my rehabilitation facility. You can't see it very well and the image that it does have a curve to the left, intended for a right-handed user. Making it easier to get the food in your mouth.

We've modified it by sending down the thickness of the handle quite substantially and by adding the two rings that you can see in the picture. These two rings are simply riveted in place a little loosely allowing me to position them for best alignment to my fingers. We've also added a little soft tape on the inside to just help with spacing. This is a prototype and we are still working out some of the details like where exactly to place the rings. That said, this spoon seems work the best for me at this point in time.

say hello to my new spoon

The rings are something you would find in any hardware store. I believe that intended to hold small pipes in place during construction these modifications were made for me by my rehabilitation facility.Over my next few visits to my rehabilitation facility, we will make a few tweaks to this prototype. But I think it will stay pretty much like this. Right now the rings need to be repositioned a little bit and possibly a little bit of a groove to better hold my index finger in place. But other than that, this is working fairly well.

As for other cutlery, the next step is to see how well this works for a fork. Knives are out of the question for me. I require both hands to maintain the spoon study and get into my face.

On a side note, having a disability friendly plate helps immensely. One with a raised edge helps to push the food onto your fork or spoon. I wouldn't say it's required, but it does help prevent the food on your plate for making a break for it.

And, just for some fun. You can see the whole "Rejected" video here: Rejected Stupid, yes. Funny, even more so ;-)

My Springpad…

Some of you may have noticed that under the "things I'm following" widget I have linked to spring pad. I just like to take a moment to point out some of spring tides usefulness, it's a very good and easy way to publicly share links that are of interest to you. It's kind of a public bookmarking system. He keeps things much more nicely organized than sharing on other social media sites like Facebook.

For the purposes of this blog you'll find a number of notebooks where, I would like to take just a moment to point out two in particular.

The first is a recipe notebook. Here I'm going to post links to recipes that are very easy to have pre–prepared and dump into a slow cooker or some other very easy method of preparation and cleanup.

In my case, I try to help out around the house still by making sure meals are as ready as I can make them for when the wife gets home. I do this I getting some help from social services once every two weeks to help me prepare meals. One thing that I have found incredibly useful to do is have the social worker prepare all the ingredients before hand, dump them in a big Tupperware and then when it comes day to cook I simply have to dump everything in a slow cooker.

This way the wife comes home to a fresh, hot meal that has very little cleanup for her to worry about. Believe it or not, this might not seem like much but even with my disabilities this amount of help from my wife removes a huge burden from her.

The second notebook is one that came about through a little bit of frustration and trying to get some items to work properly for me. So in the spirit of the life hacker website, I've created a notebook which has various hacks to devices and things around the house that make my life much easier.

Right now there's not much in the second notebook, just a hack on how to modify the Griffin Beacon to run on AC power. Be writing more about this in another post, but this should be a good idea of the type of links I will be posting.

So be sure to check up on my spring pad from time to time! You'll hopefully find a collection of other useful links ;-)