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.

Saturday, 21 December 2013

The Blue Ant

No… not this guy!
A few months back I came a cross the blue ant commute hands free device, which seem to address an issue I've been having with my iPhone. Which is, hands-free answering, and while I've jailbroken my iPhone to allow hands-free control, the one big thing that's missing is the ability to verbally answer a call. Sure, I can activate Siri and place a call. But if someone is calling me, I still have to pick up my phone and physically answer it.

Honestly, I think this is probably the single biggest accessibility feature missing from Apple products. Voice triggering. I really wish they would add it, if they had I very likely would not have jail broken my iPhone.

What caught my attention was that once this devices. With your phone, it acts like any other hands-free device but allows voice activation. I could toggle Siri simply by saying "launch phone control", which is essentially the same function provided by the jailbreak with hands-free control. But if someone were to call me, the blue ant would ring, in the same way as it would a Bluetooth headset but, having integrated with my phonebook it will verbally tell me who's calling and all I have to do is send say "answer".

Needless to say, with failing dexterity this is rather interesting.

I've been using it on and off for couple months and surprisingly I'm not finding it quite as useful as I had hoped. First of all, I'm told that the audio quality for the person I'm talking to is quite good. Better than with other hands-free devices. However there are three things which I find really get in the way of regular usage.
  1. Voice to text speech recognition… Not so hot.
    I use this far more frequently than I do for making or answering phone calls.. Updating my status on Facebook, sending text messages or quickly replying to an e-mail. I use voice to text quite a bit. I have found that going through the blue and commute significantly diminishes the recognition accuracy. Which is really quite unfortunate.
  2. Another device to carry around…
    For me, the whole point of going to the iPhone and keeping with my was the reduction of things that they needed to have attached to my waist. Providing the maximum amount of functionality for the least amount of stuff. The blue ant commute, would require me to carry around another device. And at this point, verbally being able to answer calls does not add sufficient utility to justify.
  3. Cannot verbally hang up
    we've all been there
    It's great to be able to answer hands-free, but if you can't have some other means to end the call. You're still required to manually terminated either by manipulating your iPhone or the blue ant itself. This might not sound like that big of a deal, but when you want to get off the phone with the telemarketer or someone who just… Won't… Shut… Up…
The blue ant commute usually retails for around $100 Canadian. I however found it on sale for about $70.

Don't get me wrong, the device does have its usefulness and is I've said, the audio quality for regular phone calls is really quite good. It is small (almost the same dimensions as the iPhone 5), easily portable and is something that can easily be attached to the side wheelchair, your belt and so forth as it's intended to be mounted on the sun visor of your car. I should however point out, I've not used it in the car yet.

So, if you do not want to jailbreak your iPhone (and with IOS 7, you presently can't anyway) this could be a pretty good way to get some hands-free control back. Sure, the Bluetooth range on the blue ant isquite good and I can probably use it throughout my house, but because of the limitations mentioned above, I still prefer to carry around my iPhone. It is presently Velcro to my waist. 

The utility of the blue ant is good, but just not sufficient to completely address my needs for day-to-day use at this point in time. So in conclusion:

Friday, 6 December 2013

Remote PC Start up Tools & Siri proxy

This is a little project that is kept me occupied for some time now, partly to do with a few difficulties in implementation. But the idea is to allow me to remotely start my computer without having to find my way to the basement to do so.

So why would someone want to remotely start the computer? Well I download quite a bit of media which is stored on the hard drive of my desktop and I use media streaming to send this content to one of my gaming consoles so I can watch it in the comfort of my family room which is on the ground floor. My desktop PC is in the basement separated by a flight of stairs with big nasty scary teeth and with mobility issues, I don't always feel like taking the chance. Especially when the lighting conditions are a little dark. For some reason this really messes with my balance, making stairs downright hazardous at times.

I tried a couple different apps, and hit a few speed bumps on the way that were not expected. Here's what I found.

First off, the speed bumps

Every motherboard on your computer nowadays will have a wired network connection. If you go through the BIOS is just about guaranteed that it will support some sort of wake on LAN functionality. Simply enable it, and you should be good to go right?

Well, not so much.

I have an older Asus motherboard that those sales for wake on LAN. I figured this should be enough. Enabled it, set the magic package and would only work immediately after shutdown. The motherboard power savings would shut down the network connection is well after a period of time. This caused quite a bit of annoyance.

So for about $10, about it PCI express network card. This solves the problems. Once the BIOS was set, the PCI express port maintained power, even after the PC shutdown.

Secondly, not all routers will support away, and set up. In particular Linksys routers (which is what I have) don't allow you to set the subnet mask which is required to forward the magic packet the subnet mask needs to be set to Contact Linksys cares technical support via twitter. They were very helpful with me for sorting this out.

How does it work?

Very simply, we will be using a computer or a smart phone to send what's called a magic packet over your local area network to the desired (powered down) computer. Once you BIOSes appropriately set up, your network card essentially never sleeps and monitors the network for the appropriate magic package.

There are a couple ways to send this.

iShutdown Is probably about the easiest way to go. Simply install the app on your smart phone and then from the link here, install the service on your desired desktop. Once everything is installed, with your PC running simply search for the server via the smart phone app. It should detect it right away. This will allow you to remotely start and stop your computer and has a very nice interface. It's also very easy to monitor several computers if you so choose.

This simplicity makes it well worth the $2

Your next the best option would be to try send a magic packets with depicus.com. This is also a very good app. Works flawlessly, but is a little bit more technical as it exposes you to more of the raw details. It however also has the scanning function to find computers on your network. But what is very interesting, is that also offer a free wake on LAN packet sniffer which will allow you to view magic packets that are being sent and received by your PC. Very useful when you're setting things up to make sure things are going to the right places

This is also $2 on the App Store.

Then there is the Siri proxy… My personal favorite!

If you've already figured out how to get Siri proxy running on raspberry pie, this edition is actually really quite easy, and it's free! If you are running Debian like me. Go here for information on the install
  • open terminal and type
    aptitude install wakeonlan 
  • test the install
Once you are sending and receiving magic packets from your raspberry pie to your PC via terminal, is just a simple matter of adding the recognition block into your Siri proxy script, editing your Mac address, rebundling and restarting your Siri proxy.
#wake on LAN-------------------------------------------------
   listen_for /wake up my (computer|PC|desktop)/i do
    say "waking up your computer"
    system 'wakeonlan -p 7 YOUR_MAC_ADDRESS'

    request_completed #always complete your request! Otherwise the phone will "spin" at the user!
And this should be enough to get your serial proxy sending magic packet.

But having set this up, if I decide to watch a movie I simply voice activate my iPhone, tell her to wake up my computer and within a minute or so the media servers visible on the network.

Very convenient, very fun. :-)

If you're looking to set up a wake on LAN, I hope this helps you set one up.

Tuesday, 19 November 2013

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.


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.

Wednesday, 16 October 2013

Old IPhone, New Life As Dedicated Dragon Mic

Back in July, I did a post about various microphones for use with Dragon naturally speaking. Some working better than others. The one microphone, that has always impressed me for its ability to comprehend what I'm saying but has been terribly convenient was the dragon microphone app for iPhone. The reason I found it not terribly convenient was because my screen lock would time out and locked my iPhone. Shutting down the microphone, often in midsentence.

Yes, I could easily go into the settings and change the timeout time. But the pain in the butt is that I
would have to do this every single time. Not to mention, I would have to remember to set it when I'm done. Not terribly convenient.

Then, for some reason the other day it dawned on me that I had by old iPhone 3GS sitting around doing nothing. So I decided to install the Dragon microphone app, and plug it into my PC to give constant power (not that it really needs this as the battery is still good) then I changed the lock screen timeout to "never".

This is working out really quite well. As a matter of fact, I'm using it at the moment and the recognition is near 100% simply sitting on my desk nowhere near my mouth and I'm speaking at a regular volume.

The only downside I have encountered so far is that I can no longer use the on-screen microphone button nor the keyboard on my PC to toggle the microphone on or off. I have to touch the iPhone. It does however respond very well to the "go sleep" and "wake up" commands. Unfortunately however, the Dragon Does not allow you to use your iPhone as a regular mic to your PC. Only interfaces with Dragon NaturallySpeaking. Which is fine for me!

All in all, this is a great way to recover some use of the old technology. It was destined to be a toy for my three-year-old (cracked screening and all) or be recycled as it now has no resale value. This way I can use it just about every day when I'm in front of the computer, greatly extending its life and utility for me.

Don't have an old iPhone? All that you can find one which is off plan for cheap on craigslist, kijiji or the like ;-)

Wednesday, 11 September 2013

Oh Just Kilt Me Already!

That's right, I've decided to start wearing a kilt around the house. But before we get into talking about that, we need to make one thing clear first…

Okay, now that we've established the rules. Kilts are not dresses or skirts and exceptionally manly… Why am I wearing one? (As matter of fact I'm wearing it right now)

Kilts, in the traditional sense are supposed to be worn "commando", and although they are quite comfortable worn in this manner and provide good "air conditioning" its not exactly why I'm wearing one. Due to the illness, and the restricted movements of my arms I started finding it very difficult to go to the washroom on my own. Getting my pants and underwear off was not that big deal (it has become more challenging), but afterwards it's become nearly impossible to put them back on. For months, I would have to shuffle into my room in various states of disrobe, lie down on my bed and perform all sorts of gymnastics to get my pants & underwear back up. Then of course came the chore of doing them back up.

trying it on, fresh out-of-the-box
Of course, if you see my previous post about my status you will no doubt have noticed that I rate the function of my hands and arms in around 15% right now. Because of this, and the fact that I spend large portions of the day on my own, I needed to find a solution that provided a better "access" to prevent "accidents". So far the kilts solution is working out reasonably well. Much easier than dealing with pants and underwear. But the key to this is of course wearing them "commando". It's also for this reason, I wear them around the house only, kind of like pajamas. They are not intended to leave the house.

Sorry folks, a little bit more in the graphic details in this paragraph… Going to the washroom now is much easier. Especially to go pee. Because of the dexterity problems I do have to sit to urinate, this eliminates "accuracy problems". The kilt is very easy to keep out of the way when sitting. However, when I have to "drop the kids off at the pool" its a bit more challenging to make sure the kilt is out of the way. But with a little bit of effort, it is much more manageable then dealing with pants and underwear afterwards. So far I've not had any "misses".

So where do I get mine? I'm wearing a deluxe utility kilt purchased from http://www.utkilts.com/. Not the traditional wool type. A traditional wool kilts would be far too heavy and unmanageable (I used to have one for Halloween costume). The utility kilt is great and has some really cool cargo pockets on either side. There are surprisingly accessible and very easy for me to keep my cell phone in. They come in a variety of designs and colors and are fairly reasonably priced.

Before finding this website, I actually ordered mine from eBay from this company. Consequently I ended up paying a little more than I otherwise would have. If you order directly from http://www.utkilts.com/ it works out to be a little less expensive, saving you about $15. The kilts are shipped by the pound, with a minimum shipping cost of about $30. But adding more than one kills only adds about six dollars to the shipping cost, so if you are serious about wearing a kilt ordering more than one might be in your interest. As a matter of fact as soon as their stock is back in, I am going to be ordering two more deluxe utility kilts.

You can also check out http://www.utilikilts.com/ for more options. These people look to provide very good quality and I believe have been in business longer. They are however significantly more expensive. Don't be confused by the second, they're not the same company as http://www.utkilts.com/ 

  • very comfortable
  • price for the kilts is reasonable. Ranging from $50-$80 depending on the design you choose
  • makes "access" for nature's call much easier for me

  • you will no doubt have to deal with the jokes of it being a skirt. If this is a real problem I recommend the following kilted T-shirt as well
  • can obviously be a little cold in the winter
  • unfortunately shipping costs are little high here in Canada
  • the fabric is a little bit stiff, even after the first wash. Making him a little bit hard to sit down comfortably and not on a wad of folded fabric
  • pay extra attention to the sizing instructions! This is critical. They are not in size like regular pants
very happy with the product, find them reasonably priced and work well as adapted clothing. I am buying more :-)

Wednesday, 4 September 2013

Status Report

As you've probably noticed, I didn't get around to posting anything last month. Life has been… Shall we say "crazy" the last while. We've had some renovations going on the home (cosmetic, not to disability related), family holidays and I've been fortunate enough to have family come across the country to help. All the while, my condition is ever so slowly degrading. But to that in a moment.

Between two and three months ago, I seem to start losing more function. I'm unsure as to whether or not I'm degenerating more quickly or if it's simply that my body is simultaneously passing a multiple tipping points which is preventing me from being able to do things, like easily scratch my nose. In any case because of this I decided that it was time to take a bit of a gamble and participate in the GSK clinical trial at the Montréal Neuro, and participation required me to stop my IVIG treatments. As I seem to be getting worse anyway, the only question is the rate.

There is no doubt that in my mind that the IVIG was slowing down the progression for me. However I was still getting worse. So the logic was simple… option A: stay where I am, I know the result… Option B: Go off of the IVIG treatment for the trial, if I get the placebo then same result as staying on IVIG (possibly a little faster). If I get the drug, well then there's a chance…

Ah yes, Game theory. My old decision-making friend.

So I've been without my IVIG for a little more than two months now and while it's too early to tell if I'm on a placebo or not, things have gotten progressively more difficult for me. But I don't think any faster than it was while on IVIG for the last few months.

If I were to put a number on it I'd say I've got maybe 15% function left in my hands and arms. I can still move them and do a few things. But not much. I'm no longer able to dress myself and require assistance with hygiene. I can barely brush my own teeth, let alone wash myself.

My legs however are still quite strong. My little guy likes to sit on my feet (he weighs about 40 pounds) and I can lift them up in the air and bouncing up and down for quite some time. My balance however is shot.

You wouldn't realize it but your arms provides an unbelievable amount of balance. As I have very little function left I tend to fall down. Heck, if you've been following my twitter (@Cpt_C_Pike) you will see that just this weekend I did a 12 hour tour of the emergency room with a mild concussion…

Consequently I'm spending a lot more time sitting down and in a wheelchair.

By rehab facility provided me with what I call "wheels 1.0" which is the manual wheelchair that we used our holidays. While this is comfortable enough for me and it did allow us to go on our holidays. It's an awful lot of work for my wife to push us around. (My little guy likes to sit on my lap).

We also have a motorized wheelchair on order… A.k.a. "wheels 2.0". They gave me a choice of colors, so I chose fire engine red which will of course make it go faster ;-) More on that after I receive it.

Fortunately, I'm having no difficulty eating or swallowing. Just delivering the food into my face hole. I am however starting to notice changes in my ability to speak. My speech pathologist has pointed out that they are not that noticeable to others yet. And that said, I am finding I'm starting to have to concentrate more and speak more slowly as it easier for me to trip over syllables or stutter. Particularly when I'm tired.

My speech pathologist said that the perceptible differences over the course of about six months are quite small. On her rating scheme, she said went from a 7.5 to a 7. And that she's even hesitant downgrade me the half a point. The changes are mostly perceptible on my end at this point. Nonetheless, I am happy that I have my voice bank done.

So that's kind of where we are at right now. All and all, slow progression which is a good thing. Keeping my fingers crossed for the clinical trial. Doing my best to keep my chin up and a smile on!

Monday, 29 July 2013

Microphones & Voice Recognition

It's been mentioned about for some time I rely quite heavily on voice recognition functionality to access my computer via Dragon naturally speaking (sometimes the Windows of voice recognition). However I have not discussed the pros and cons of the microphone/headset that I've tried. Some are obviously better than others and this of course changes as my condition deteriorates.

Something I should point out however is the exact nature of my limitations. I've lost almost all the dexterity in my hands and have very little use of my arms. I can scratch my nose, but I can no longer lift my hands/shoulders to place anything on my head.

There are some pros and cons to some of the headsets I've tried:

Wired headsets

Initially, I used wired headsets almost exclusively. However a few months ago there were two major factors that really started to be a problem for me. The first, as my dexterity degenerated it started become more and more difficult to get the headset on in a convenient and comfortable manner. The second, again to do with dexterity is at once that the headset is on, I have to contend with the wire which is often getting wrapped around my leg, falling down (then usually getting squashed under the wheel of my computer chair), getting hung up on the armrest, or otherwise being a pain in the butt.…

Since then, I've moved over to using almost exclusively a wireless headset. Nonetheless, there were some quality headsets and some work much better than others which Dragon NaturallySpeaking.

Rocketfish PS3 Headset 

This is one of the first headsets on tried. And the cost of about $20 Canadian it worked exceptionally well. It has an extremely long USB wire which is intended for the PlayStation 3. E.g. from the couch some distance away. Not really a PC, but functionally it's plug and play. What I find worked exceptionally well but this was the boom for the microphone. It was long enough that it could be placed almost directly in front of your mouth and the foamy part on it was good enough to muscle out the sounds of your breathing. Therefore Dragon's comprehension of your speech was generally very good.

The noise cancellation is so good in fact, that I could actually have music playing softly to my PC speakers (or a game) and the voice recognition would still work very well. This headset was particularly designed for voice communications in gameplay environment, so if you're a gamer. You can pipe the communication audio through your headset and still listen to the game/music through your main speakers.

If my hands didn't make it impossible for me to put this on, this would still be my preferred headset. It's light, secure on your head and reasonably comfortable for longer period of time. However without dexterity, is extremely difficult place and adjust.

Corsair HS1 Gaming Headset

These are an exceptionally good quality gaming headset. It is also USB connection with a rather long wire. There initially given to me because I was having substantial difficulty recording my voice into modeltalker. For some reason, no matter what I tried there seem to be some form of electric hum recorded with my voice. This didn't seem to matter which headset I was using.

That said, these are a little heavy but very comfortable once they're on. Because they have very large over your head ear piece I was able to place them on my desk in such a way I could sort of wedge my head in between the earpieces. Push them into position and him lift my head off of the desk with my headphones roughly in place.

Unfortunately, the microphone is a little far away from my mouth for to work well with Dragon NaturallySpeaking. I find I have to raise my voice quite a bit in order for it comprehend and even then. It doesn't work all that well for voice recognition. The other reason I think why, is even though there is a noise canceling function on the microphone it does not have a piece of foam over the microphone. Consequently the records more of your breathing and other undesired noises.

If you are using it just for gaming however, the audio quality through the headset is exceptionally good and your teammates should hear you talking to problem. The driver software also comes with a bunch of other tweaks that you can play with to modulate your voice and have all sorts of fun effects. My three-year-old particularly enjoys it rerecord his voice and make him sound like a cartoon character or a Dragon. ;-)

Again, I had to discontinue usage of these because of my dexterity limitations and fighting with the wire. There are however the heaviest of all the headphones I used and because of this, the but the progressive atrophy I doubt that I would be able to use them now for any length of time

This microphone retails for about C$100.

Wireless headsets

To be fair, I did not initially purchased these for use with my PC. I found that when I was out for my IVIG treatments which would last several hours, I would like to music listen to. Dealing with wired headsets with tiny little earbuds was nearly impossible. So I went looking for a set of Bluetooth headphones and found these. I found a retail for around $80-$100 in store. However with a little bit of online shopping, I found a pair on sale from Amazon for about $50 Canadian. And I have to say, I'm very pleased with the purchase and use them very regularly.

Although doesn't look it, once they are on they are extremely comfortable. The way almost nothing and is very easy to forget where. The battery life is extremely good and last seven or more hours of continual usage. As a matter of fact I would routinely leave the house for my IVIG appointment at 7 o'clock in the morning, start the music. Hardly ever stop it and be back home somewhere between one and 2 PM with plenty of battery life to spare.

The audio quality is very good, they do have mild noise cancellation which helps promote the clarity of which are listening to. That however are not designed to block out the sound of the outside world. You can still hear what's going on quite well, but the music or whatever you listen to is extremely clear. This also applies to receiving phone calls.

The built-in microphone is okay. I've been told I sound a little bit like I'm talking into a beer can when using. But other than that the audio quality is acceptable for the listener. I have tried the microphone with Dragon NaturallySpeaking on my PC. Well good enough for conversation, Dragon has substantial difficulty in understanding what I'm saying. Microphone is too far from my mouth and there seems to be too much noise detected.

So if you're in the market should be able to wear a pair of headphones almost all day, making phone calls with it and listen to music. These are very good purchase. Just don't expect to use Dragon NaturallySpeaking…

Oh, sure. My disability makes it impossible for me to put on by myself. However once they are on, I can forget that they are there and use them almost normally as anyone else would. And although it has happened, I rarely have to ask for help to put them back.

One neat little feature I have set up at home, is my raspberry pi Siri proxy home automation system. What's great, is that wearing these headphones as I approach my house once my iPhone (jail broken) detects my wireless network, it turns on hands-free mode (opens the microphone on the headset) and listen for a keyword to activate. All I have to do is say the keyword, verbally command my door to open and it unlocked. Wearing the headphones improves the voice recognition of my Siri proxy as I don't have to go fishing for my iPhone.

All in all, for me this is worth the price of admission.

Logitech BH870 - Bluetooth

This headset is now hard most commonly use voice recognition with my PC. I found it on TigerDirect at a reduced price for about C$30. At the time down from about C$110. Quite the deal, so I thought it was worth a try.

They have since reduced the price to about C$35.

All in all, from a comprehension standpoint it works quite well. Almost as well as the PlayStation three I heard headset. I do however find using this headset, Dragon comprehension seems to be a little bit slower than it otherwise would be. But I find if I slow down my rate of speech, it manages reasonably well.

The headset does have a noise canceling function, but it does seem to be consistently transmitting some form of noise to my PC. The Dragon icon frequently shows that it's processing. Even when I'm not detecting any noise myself in the environment. I most certainly cannot use this headset while gaming or playing music.

Even with my dexterity limitations, I'm still able to get this ear piece on by myself. It is a little bit tricky, but I am able to do so. One of my pet peeves about your pieces of this nature is they tend to wiggle the mirror hanging from your ear. This drives me nuts. This particular headset is reasonably secure, but still have that annoying wiggle when I move. Because of this, it also tends to pick up a scratching noise from my beard. That said, because of my dexterity issues still I'm not very comfortable wearing this headset out of the house. I prefer the backbeat headphones. They feel much more secure to me.

One nice feature I like about them, is that I compare the headset to both the USB dongle it comes with for my PC and my iPhone at the same time. So for making phone calls, this is great…I recently found an unlimited usage phone plan for my iPhone. This is great, as my phone is much easier for me to manipulate a regular phone.

And because this your pieces intended to be used with the PC, it will naturally integrate itself with a soft phone such as Skype. I've used it for Skype a couple times now. The call quality has been very good.

It comes with a bunch of headset options Such as different earpieces and in over the headband. This is great if you could be using a prolonged periods of time or if you have a larger/smaller earlobe. He viewed a few options. The one silly thing I find about it is discharging unit. It is very tight to slide the earpiece in and out of the charger. I can still do it, but it's getting increasingly difficult.

The battery will last several hours.

So far this is among the best options I have found using voice recognition wirelessly on my PC.
This is a free app available from the iTunes App Store and I know that android offers a similar app.

This app is a very pleasant surprise. It works extremely well and comprehending your speech indicating the commands to your computer. I've tried it even just sitting it on my desktop and talking added. Not even having it that close to my mouth. Again the comprehension was exceptional. I would say, by far the best of anything I've tried. That said however, it is unlikely it would work nearly as well if there is music playing or if your gaming. I've not tried either of these situations as I don't expect it to work.

Dragon microphone connects to your PC through your Wi-Fi interface. Not Bluetooth. You don't need any additional dongle or Bluetooth functionality on your PC. Just your Wi-Fi enabled router. Set up was extremely simple. Simply create a profile… Start the app… And that's about it.Upgrading from my 3GS to my iPhone 5 was even easier. Simply had to install the app on my iPhone. No profile update or anything.

The only annoying feature I have found is that if you have the power save mode on your iPhone to turn the screen off. Then it also turns off the voice recording of the app. Making you have to press the home button and unlock the screen once again. This can be rather annoying… Especially with dexterity limitations.

That said, it's something that you can turn off when the iPhone's general settings. But once again, annoying.

Especially for the price, this is really good way to go and it could well fit better with some of your dexterity limitations that does mine. So if you are running Dragon dictation and are looking for a wireless microphone, iPhone or android this is definitely worth trying before investing any money.


My preferences really depend on what I'm doing. Anything to do with my PC I use the Logitech hands-free headset. It works very well and is reasonably priced. But as I mentioned, I'm not very comfortable wearing it out of house.

For general usage with my iPhone, especially when I'm out the back beat 903+ headphones are by far my preferred choice. Excellent sound quality, extremely comfortable and works quite well with Siri, but not so hot with Dragon NaturallySpeaking…

Friday, 19 July 2013

Reading without thumbs

It's been a long time now since my hands have let me hold on to anything. Papers are particularly a problem, and I can forget books. However I do want to keep up on my literature from time to time. I particularly enjoyed reading on my iPad. I have an iPad three, with the retina display which makes the reading experience really quite enjoyable. Sure, I can't use all of the features that easily anymore, but I can still tell the reader to scroll and or turn the page.

For a while I used a folding cover for in this worked okay for a while. But where I'm at now, this is extremely awkward to get set up and sometimes a pain in the butt to keep his position.

A while back, a friend of mine posted a picture of himself using something from the Apple store called a hover bar. This is essentially a flexible bar that you clamped to your table with a flexible arm which is about 2 feet long. Your iPad snaps into this, you bend it into position and it holds itself up right.

I thought this was quite a neat idea worth trying. They were however asking C$80 for it, which seemed a little bit much. So I decided to try an exact copy of it I found on Amazon.com for about $50 called a GMYLE® Black 360º One-way Clamp Adjustable Arm Stand . The only difference that I could tell was in the clamping mechanism. As opposed to using an Allen key, it has a built in arm to turn a screw on clamp.

I'm reasonably pleased with the purchase, I am however trying to figure out how to make the best use of it. Not quite worked out all the kinks yet. Is what works and what doesn't:

  • hold the iPad in position as advertised
  • makes it possible to read fairly comfortably.
  • Will support nearly unlimited positions and orientations
  • you can clamp it just about anywhere (even a hospital bed if need be)
not quite so awesome:
  • as my arms and hands are extremely weak, it can be very difficult to reposition.
  • The ball joint on the back can be a little loose, causing the iPad pitch down out of position.
  • once my iPad is clipped, there's absolutely no way I can get it out myself
Little bit of both:
  • depending on what I'm doing, it can make it easier to access certain features or parts of the screen or more difficult. For example reading iBooks or magazine once it's open is much easier. However maybe pushing the "library" button within ibooks might be more difficult to reach.
All in all, I'm reasonably pleased with it. I don't know if I would have been quite as happy if I had purchased the $80 version and had the same difficulties with it. But for $50 it feels like money well spent and does help me keep reading and very pleasant format. The iPad is great for reading a wide variety of formats… I'm particularly enjoying the walking dead graphic novels and popular science magazines from the newsstand. Unfortunately it's not helping me get back into playing even some of the simpler games I have to pass the time (Magic the gathering on iPad is great).

final verdict?
Not totally sure… Thumbs up or thumbs down.
Honestly, little bit of both.
I had however hoped it would worked with Griffin Beacon as my remote. While it communicates fine, it doesn't help me with the ease of access. I still prefer to go back to my iPhone that.

It will however be a great set up for videos and Netflix.

So all in all, I have to admit I'm not totally sure if it's a 100% thumbs-up or thumbs down. It solves some problems but incurs a few others. So I'll say this, if you have the spare cash it's worth a try. I do enjoy being able to comfortably read again, and not being tethered to my PC to do so… So I guess that's a little more of that thumbs-up.

Sunday, 7 July 2013

Unreal Script Lessons… From days past

Something Completely Off Topic…

My life before ALS.
Unreal scripting & game programming.

The other day I was thinking about my life before ALS and for some reason I started thinking about my old teaching job. I've not mention it before but I used to teaching introductory game programming. Specifically mod authoring for Unreal Tournament 2003 using the built-in unreal scripting language. In these classes we would teach students how to take what was a first-person shooter and turn it into, well any other form of game solely through the scripting interface.

While these lessons are now dated, especially since unreal engine 3 has come out the structure of the script has changed. The fundamentals of the scripting language have not. For example if you want to modify one of the weapons functions or the player controller it might be in a different place in the script, but the principles of the language to make the changes are the same.

So in light of my situation in dealing with ALS, I've decided to share all of these lessons with the world. I just copied my old folder straight up to my Google drive account. So there is probably some traffic for you to sift through. But all of the lessons are there, free for you to use as you will. The only thing I would appreciate is if you use them in a public sense, please put a note in your script somewhere as to where you found the reference.

I hope they're still useful, and that you enjoy them as much as I enjoyed teaching them back in the day.

Introduction to C++ programming course

in my last semester teaching, before I landed a job in the games industry I was also asked to do a standing course for introductory programming for nonprogrammers. The goal of this course was to give a whirlwind introduction to C++ programming so that the students would have a basic familiarity with how to code.

If memory serves, these lessons were all written using Visual Studio 6.0. Shouldn't be a problem to port this all over to newer compilers.

These lessons are not quite as complete as the unreal scripting lessons as they were done more on the fly on the whiteboard so there are no  PowerPoint walk-throughs. Nonetheless are some notes with explanations and a few very basic coding samples to help people get started.

Tuesday, 25 June 2013

Raspberry pie versus Desktop

I know, I'm a bit overdue for a post. One of the reasons being is that I decided to try running a raspberry pie for my Siri proxy and have been occupied playing with that. Initially, I was just going to use the desktop that was arranged for me my friend. A Siri proxy is a great use for an old machine, and the one that was given to me was a beast in its day, grossly overpowered for my needs.

As you saw in the previous post about setting up a home automation system, the setup was reasonably easy. It did however require that at first the Ubuntu machine has a keyboard mouse and monitor hooked up to it. Once this is all done, I could fairly easily use VNC to connect to it. From there I can use all my assistive technology to do the installation I need. But the initial setup was a bit cumbersome for this reason only. Without hands that works very well, the required manipulation of the keyboard and mouse was challenging. The other thing is that the old desktop, being is overpowered as it was generated a fair bit of heat and consequently had a number of fans and to keep cool. The machine was a bit noisy.

So, for a friends birthday we thought a raspberry pie would be a perfect gift for him and on a bit of an impulse (also some encouragement from my girlfriend) I decided to order one for myself as well knowing it could be used as a Siri proxy. After all, this is how siri proxy first came to my attention with Elvis impersonators raspberry pie garage door opener.

I did need to help to set up initial wiring and plugging the SD card. But once that was done, set up was actually far easier than with the desktop, and not just because I'd gone through the process previously. Out-of-the-box, once the pie is plugged in it boots up by itself (no power button) it is set up to network into it immediately. No need for a keyboard, mouse or even monitor. Simply use putty.exe to get started. The raspberry pie is dead quiet. There are no fans, nothing to make noise. As a matter of fact it requires only 5 V to run this the 700 MHz, credit card sized computer. Pretty impressive, especially for just US$40.

Want to give it a try? Here's what you'll need…

I am presently running my pie headless (without monitor or keyboard) and am going to assume you're wanting to use the same here.We ordered everything from www.adafruit.com Here's the minimum parts that you will need to get started:
  • A raspberry pi model B. US$40
  • 5 V power adapter a micro USB cable. US$10
  • SD card for Raspberry Pi preinstalled with Raspbian Wheezy US$15
  • network cable.
And that's it! You can get a raspberry pi, Siri proxy server up and running for about US$65. I would however recommend also purchasing a case for it, it's always a good idea to protect and exposed circuit board. You can buy one for as little as US$10

I based this list on the starter pack listed on their website. I figured it was a good safe place to get a list of everything I would need. The starter pack includes a whole bunch of stuff for wiring and doing custom electronics, nothing I would need. Just for fun I also added a very small 4.3 inch TV monitor for an additional US$50, which I have yet to hook up. But my friend got one as well and he loves little thing.

Setting up your pi…

I chose to purchase the preinstalled SD card for pure simplicity reasons, it was only a little bit more expensive and I figured doing so would save many headaches of trying to manipulate the card between my desktop and the pie. My dexterity can't handle it anymore. This way I was sure of the install that would work right from the get go.
  1. Plug everything in (Duh). Make sure the SD card is properly seated, you have power and network. When the pi is booted (should take only a few seconds) you should be rewarded with several LED lights. Red yellow and green. If you are greeted with a solid read only, your SD card is probably not well placed. This happened to us. Unplugged the pie, reseat the card and try again.
  2. Find your pie on your network. In order to be able to connect to it remotely, you need the pi's IP address. You can find this fairly easily through most newer routers or you can using IP scanner.
    These are excellent instructions for your first time login using SSH
    Raspberry Pi SSH Login without Monitor
  3. Through SSH login, enter this command:
    sudo raspi-config 
    then follow this first time set up guide
    As mentioned, out of the box you should be able to network into your pi using SSH. However there are a couple things you will want to make sure you do:
    1. use your whole SD card
    2. check for updates
    3. check the boot behavior is set to desktop
    4. optionally change the default password for user pi (I believe the default password was…: pi) keep in mind, Linux-based systems such as the raspberry pie are case sensitive particularly important for remembering your passwords ;-)
  4. Now to install and set up VNC
    1. these are the instructions I used, but a very good step-by-step guide here: http://learn.adafruit.com/adafruit-raspberry-pi-lesson-7-remote-control-with-vnc/overview
    2. Personally I followed these instructions:
      once VNC is installed, you will no doubt wanted to start on boot. These instructions will walk you through the process
    be sure to specify which desktop
    you want to connect to
  5. reboot your pi (type reboot ) and reconnect using VNC
    start VNC viewer on your desktop, enter the IP address of your raspberry pie followed by :1
    the reason you want to do this is that you are specifying which desktop to connect to. You can run multiple desktops.
And there you have it. Your pie should now be up and running with a VNC connection.

One thing I should point out about VNC is while it's a great and convenient way to access your pi it does have a few limitations. You can use the accessibility tools from your Windows environment, for example I can use DragonDictate to send text and controls directly to the pi. However I cannot copy paste from my desktop through VNC onto pi, which can be a bit inconvenient (possibly because I'm using the free version).

Another reason why VNC is Uber cool
I can connect to my pi from my iPad or iPhone!
Installing Siri proxy on your pi

The best, and probably easiest way would be to follow Elvis impersonator's instructions. I installed mine through SSH, one command at a time. This step is a little bit more complicated as you will have to take out the commands from the text file one by one. Nonetheless, it's pretty straightforward and you will find the complete list of instructions here:
Optionally you can set up your raspberry pi to start Siri proxy on boot. Once again, just follow Elvis impersonator's instructions:
Personally I've not set my Siri proxy of to start on boot. I kind of like having the terminal window showing me the output so I can occasionally check up with what's going on. If you if you choose to start your Siri proxies this way,  you will have to do it at the desktop level. Connected using VNC and run root terminal. In my case, for some reason it does not remember the path to the install, I simply have to rerun the following three commands in the root terminal to start the server.
  • [[ -s "/etc/profile.d/rvm.sh" ]] && . "/etc/profile.d/rvm.sh"
  • echo '[[ -s "/etc/profile.d/rvm.sh" ]] && . "/etc/profile.d/rvm.sh" # Load RVM function' >> ~/.bash_profile
  • siriproxy server

Modifying the example plug-in

about to go through the details of how to go about modifying or creating your own plug-ins. I believe that is a project for you to figure ;-). However, I did create a little auto hotkey script which will make the process somewhat easier.

My goal was to allow myself to use my Windows environment to use the actual modifications to the example plug-in script. Doing so would give me full access to my voice control,and other accessibility features. Not to mention a nice editor. You can download my autohotkey script here:
This script is just a convenient way to send a final from my Windows desktop to a raspberry. In order for to work you will need to have pscp.exe installed which of to download from the same place you  downloaded PUTTY 

  1. In the first box, this is where you want to send a file. Specify as root user. type in the full path.
  2. The second box is the file that you want to copy to the raspberry pie. Press the select button, go find your file.
  3. in the final box use the select button to specify where you downloaded pscp.exe
  4. modify your source file, save it then press send it. This will copy the file onto your pie.
I created this only has one way send to pi because I don't expect have to copy files back from my pie , very often, if at all.


This should be enough of the pieces to get to well on your way. Goal here wasn't easy tutorial but more to show you where to find hold the parts. I'm finding it surprisingly easy to work with the pie in this manner. So if your voice is still strong in your house I need/use for Siri proxy, a raspberry pie is a relatively inexpensive, not overly complicated and very effective way to get it set up.

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.