Over the last several years I've been dealing with various stages of disability thanks to ALS. My goal is to share solutions and review various products/tools/devices that I have found particularly helpful.

Thursday, 30 May 2013

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:

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.

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.

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.

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.

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 ;-)

Thursday, 16 May 2013

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:
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.

Tuesday, 14 May 2013

A Little Hack for Dragon Naturally Speaking

I used Dragon NaturallySpeaking a fair bit… Well, a lot… Okay, to be honest just about every time I'm in front of the freaking computer! For the most part, it works quite well and does when they needed to do. However it does have one nagging irritation for me. By default, you cannot set a default user profile to load when you restart your computer.

As we all know, computers (especially Windows) need the occasional reboot. Not having my Dragon dictation online when the computer boots, well is kind of annoying. Especially because having hands that don't work so well and right clicking often being challenging these days I have to go but futzing with the mouse, right-click the task manager icon and select the user profile I want load.

I found a neat little way to force Dragon to load a specific user profile on reboot. Here's how you do it:

open the Dragon in the start menu under startup
start menu --> Start up --> Dragon NaturallySpeaking Quickstart
right-click and edit the properties
add the following the target (you must delete any existing flags and replace it with this)

Doing so should tell Dragon to load this profile whenever Windows restarts. Be sure to pay special attention to the placement of the quotation marks.