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.

Something for the Smokers…

We all have our little vices which give us a degree of satisfaction and pleasure in our day-to-day lives. Mine, as previously discussed in this blog is a really good cup of coffee. For me this is merely an essential way to start the day. Many of you however they also enjoy a good smoke with your morning cup of Joe.

Before I continue however, I really should qualify this post by saying "I am not a smoker". Okay. Now that's out of the way, I can get on with the story…

On a recent visit down to the ALS clinic at the Montréal Nero, I got involved in the discussion with the occupational therapist there and she was telling me about an older woman who'd really enjoy being able to continue smoking but was having significant difficulty in holding the cigarette. This conversation reminded me of something some of my friends had tried, which is the E–cigarette. Also known as an electric cigarette.

I personally can't vouch for the taste, but I know my friends who tried it quite enjoyed them and they found them to be very practical. So after telling the occupational therapist about that E–cigarettes, I decided to look into them. The following is copied from the e-mail I sent to my occupational therapist on the matter.


These might be very interesting for people who wish to continue smoking with motor disabilities for a couple reasons. 

• you don't have to light them. They are battery-operated and rechargeable. I even saw some that operate without a switch, the "tobacco flavor" is activated when you inhale.
• They burn cold and this is a big deal because if the user happens to drop them, they cannot set themselves on fire
• They appeared to be much cheaper than regular cigarettes. One drop of flavoring is good for about 250 cigarettes and it costs about $10-$12
• electric cigarette is reusable, so the initial purchase might seem a little bit expensive. But you make up for it over time.
• This seems to be huge number of flavors to choose from as well.
• There is no secondhand smoke. Electric cigarettes simulates embers on the end (glows Orange with an LED) and even provides a smoke effect when you exhale which is just water vapor.
• For people who have motor disabilities holding a small items such as this, because it does not burn hot you can put all sorts of foam expansion rings onto it to make it easy told on two… Like the ones I have on my shaving razor and tooth brush ;-)

a YouTube video with David Letterman and a "smoking demonstration" 

There's a very large number of Canadian E-smoking sites selling these. Here's an example of one
http://esmokercanada.com/e-cigarette-starter-kits. I must admit, given the costs and benefits over regular cigarettes I'm almost tempted to try one myself. I'll let you know if I do, but in the meantime if you do please post a comment and let me know how you like them. I'd be very curious to know.

You can also read about them on the wiki here: http://en.wikipedia.org/wiki/Electronic_cigarette

Loose Change and Sanity

Occasionally getting out of the house to maintain contact with the rest of the world is often a good thing. Even if it is just to be around other people. One of my preferred destinations is to go to Starbucks just to grab a cup of coffee.

Now as you may have noticed from previous posts, I like my coffee.
I do have to admit that I have a certain bias to Starbucks. My first serious girlfriend worked as a barista their, so let's just say I  have a certain Pavlovian conditioning to the smell and the green aprons ;-)

One of the problems I tend to have is that for small transactions, you have a tendency to paying cash. It just doesn't seem to make a whole lot of sense to bust out the credit card for $1.50. This then of course means that you are getting a handful of change back, and with the state of my hands this is very difficult to manage. I usually end up dropping it and if nothing else trying to figure out what to do with it later on… And I can pretty much forget about trying to use it to pay for my coffee the next time around…

Because of this, I decided to start using the Starbucks prepaid card thinking that fumbling with the card from my wallet would be much easier to manage than a whole bunch of coins. For the most part this proved to be pretty much the case.

Shortly after I discovered the Starbucks iPhone app which is really pretty cool. Not only does it have a whole bunch of extra features for things like finding the nearest Starbucks, but you can actually link to your prepaid card/account and then use your phone to pay for your purchase.

For me this is great, it eliminates with all the dexterity issues associated with dealing with cash and coins. Not to mention to a lesser degree, the prepaid card itself. On top of that, my phone is usually in the side pouch of my grab it pack and being much larger it is much easier for me to manipulate. The only pain in the but I would give it is a from time to time I have to re-login and enter my password… Which is now become a bit fidgety to do.

There are a few things about this that I find a particularly cool:

1. the iPhone app will show you the running balance on your card.
2. There are several options to reload dollars onto your card either via the Internet or via the app itself.
3. Starbucks offers a pretty good reward program starting with free refills and syrup, and ending with some free coffee :-)
   of course you can see how many rewards points it accumulated via the app as well.

Now some of you might be thinking "well duh! I've been using prepaid cards for ages". But sometimes we just don't see the obvious solutions that are staring us right in the face, and dealing with ALS a friendly little nudge can be really helpful… More stories on that one later ;-)

Coffee

Me, like a lot of people I love a good cup of coffee. Particularly first thing in the morning. But with my disability affecting my hands to such a degree it was starting to become very difficult to make a cuppa coffee on my own. Using a regular drip machine, I would have coffee grounds all over the countertop  and then there was always the adventure of pouring the coffee into the cup… This was exponentially worse when I tried to make espresso.

Nespresso Pixie

So several months ago I discovered an Nespresso coffee machines. They make a very good espresso and the coffee is all preloaded into little capsules making it extremely easy to pour. Drop the puck in, close the chamber, push the button, wait a few seconds and enjoy.

The machine shown here is exactly the one I purchased. It's the pixie and it sells for about C$250, making it a bit expensive for a cup of coffee but about on par with other espresso machines. What is particularly great about this machine is the handle. In some large silver ring on the top left of the machine which is used to close the machine, and puncture the capsule. If you are like me and have a significant impairment of your hands this lever is extremely easy to grasp and close.

There are a number of different machines to choose from, with of course varying price and functionality. But for me the accessibility  provided by this machine via the handle is what really appealed to me.

Of course there are also a number of other coffee brewing machines which operate on capsules or packets, some of which are cheaper. However for the price is the only one that I found which is an actual espresso machine. Meaning the coffee is actually brewed at 19 bars of pressure and because of this it makes a very nice creama (coffee foam).

There is a wide choice of capsules to choose from, 16 total ranging from mild through two very strong coffee. The price of which is between $.63 and $.69 each. This might seem a little bit expensive, but price comparison to the other non-espresso pods at the local supermarket shows them to be only marginally more expensive for good quality coffee. One must also keep in mind that these are expressing portions, meaning a long poor will only give you 125 mL, or about half a regular cup. That being said, with the richness of the espresso and the shakiness of my hands, I find a half a cup portion to be about right.

Although Nespresso recommends many of the capsules only be used for short shots of coffee, I find using a long poor on any of the stronger ones still gives a very pleasing and rich beverage. However easily reprogram the length of the poor should you choose to do so.

another feature that is interesting to this model, is that the little tray that you see the cup of coffee sitting on the image folds up allowing you to place a regular sized coffee cup instead. I find that this way I have a little bit of a safety margin with a regular cup, so I'm less likely to spell it in the cup itself is much easier to hold on to.

So if you are coffee lover like me and have some kind of issue affecting dexterity. This machine could very much be an answer for you.

Cost: C$250
Pro: very accessible espresso machine, with no mess and it's very easy to operate.
Con: only accepts Nespresso capsules