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.

Friday, 22 May 2015

Beating the Cold with Snug Pack Poncho Liner

Yes, I know. It's almost June and spring is here. Thank God winter is over. Obviously, this particular post is a bit overdue.

One of the biggest frustrations I had with trying to keep warm in the wheelchair was that no matter what we did or what I'm warm. I would still get this cold draft coming up from the small of my back. In addition, I would very often feel the cold for my jacket rather quickly around my shoulders and upper arms. Even though my Milwaukee heated hoodie was working great. It couldn't help with some areas.

Notice how open the back and sides are
So I started looking at poncho ideas. Obviously the first ones I looked at were wheelchair ponchos. These looked okay but seem to be more have a cover for the wheelchair occupant that covered the legs arms and top of the back wheelchair. They kind of tapered towards the front E.g. Long enough to cover the knees on the front, but only just past the shoulders on the back. Would do nothing to keep the back warm.

That and it also cost upwards of $200!

… Not to mention that you look like a fashion reject from an old folks home.

Start doing some shopping around I found the snug pack poncho liner. Usually priced around $100, but I found it for about $50 on Amazon.ca (the price has since changed)

It is extremely light, huge and surprisingly warm. It is insulated with the material called travel loft, similar to prima loft. It's not really rated for the deep cold, only to about 10°. But as an additional layer. It works extremely well with all my other winters got. I was outside for long periods (well over an hour) at less than -20°C. It made all the difference.

It is meant for some pretty hard-core outdoor type activities and the military. So the back of the poncho is really quite long, designed to go over a backpack. What this means is when you put on and then sat down in the wheelchair, it covers my back all the way down to just about my knees. Using the poncho, I never had that cold draft going up my back.

It is windproof and water resistant. So by itself, I would not use it in the rain (it is intended to go inside the enhanced control poncho) but I wouldn't worry about it in a light drizzle.

Putting it over top of my winter coat and tucking it down it worked great as a windbreaker and greatly improve the cooling problem I was having on my shoulders and arms.

my dog found the hood to be
pretty great
It is really easy to put on and big enough that if you so choose you have more than enough to cover the headrest and the back of the wheelchair yet of talking in. The hood is also great, it tightens up fairly comfortably to help keep out the draft.

I have also used it as a regular blanket around the house to keep warm. In less extreme temperatures I had even just use the poncho without a coat. It's been quite convenient.

I am very happy with the purchase, it does a great job.

Wednesday, 6 May 2015

The awesome power of the Toby eye tracker

My apologies for having such a long radio silence. As you might've guessed, life is becoming a bit complicated and keeping me busy. I've also been wrapped up with a side project (which will be featured later, but you can see the early prototype at the beginning and end of the video) for using my voice bank.

Anyway, I promised to get back to posting. But just to get something up quickly, here is an example video that my rehab facility asked me to produce for them. The is a demonstration of how I use my Toby tracker to assist me in my day to day life. The video is edited and as was provided to my rehab facility. Nonetheless, I think it does quite a good and detailed demonstration of how it works.

Tuesday, 27 January 2015

Accessing the Power of Autohotkey through Voxcommando

Back when I first mentioned voxcommando, I talked about how it can be used with autohotkey, but didn't provide an example. Honestly, I wasn't quite Happy with it for me to put public and I wanted to solve an example to do with pushing buttons in dialogue boxes. Now that I have it figured out… Here it is! :-)

Autohotkey and voxcommando example.zip

Yes, I know Python is integrated into voxcommando as a plug-in. So please don't jump on me for not using it. I chose to use autohotkey for two very specific reasons. First off, autohotkey is intended to emulated mouse and keyboard input. Which is exactly what I needed to achieve. In particular we need access to the Windows key button. Which I'm not sure can be easily achieved through Python. This is native and integral to autohotkey.

Secondly, which is a bit more off and aside. Autohotkey provides a hotstring and hotkey override/functionality. Which is particularly useful with a disability such as ALS. Because of this, I had developed a previous understanding of autohotkey.

Okay, about the example. Its core functionality is really quite simple. I create a command inside voxcommando, which is then used to execute a autohotkey scripts which passes in a command line parameter, such as "showdesktop". The command line parameter is then parsed out and the relevant bit of script is executed. Which in this case is to press Windows key and D (or in autohotkey language Send #{d} ).

In the example script, you will find examples for the snapping a window to the left, right and the four corners of your screen. Force rebooting your computer (don't worry it asks for confirmation first.) And how you can use autohotkey to pushing buttons in dialog boxes.(Eventually, I may expand it to do more. Right now it does just buttons)

I am told user account controls no longer
provides much benefit. Make it less annoying by
shutting it off
The dialogue box and button example was something I really wanted to get working. It provided more headache than expected, which is what caused the delay in publishing this article. However, the difficulty was not in the autohotkey script itself, nor voxcommando. Both of those worked beautifully. The issue was in finding a way around the user account controls provided by Windows. This was blocking the  autohotkey script to push the buttons. I tried numerous solutions and workarounds. The most successful support program was something called "UAC trust shortcut". While this worked, the functionality was erratic. Sometimes it would work, sometimes it would not. Could not figure out why. I found the best solution was to simply turn off the user account controls altogether.

What's that you say? It's a security feature? Yes it is. However, I discussed at length some of my computer programmer friends (who have much bigger brains than my own) that the security provided by user account controls is somewhat outdated and offer little benefit anymore. So would their assurances, I have turned mine off. (Don't worry. There is nothing compiled in the zip file. You can examine all the autohotkey scripts before using them).

Okay, I can get you thinking, "why is this a problem?" Well, in order for autohotkey to be able to send button commands to another dialog box. That Script needs to be run as an administrator, then the upgraded to do so, he has to come from another script.

Dont forget, if you want to give this script a try you need to install autohotkey from http://ahkscript.org/ other versions will likely not work.

Because autohotkey and voxcommando play so very well toghther, each get a thumbs up!

Wednesday, 14 January 2015

Beating the Cold with Milwaukee's Heated Hoodie & Camping Slippers

Seeing as it's freakishly cold here in Montréal right now, swinging between a balmy -20°C and -40°C. It seemed like a good time to introduce a proper Canadian tradition, the good old the Canadian "two-fer". As in two for one… But sometimes also applies to a case of 24 beer… Sorry kids, not that one. ;-)

Before hoodie...
Around about this time last year, you may recall I posted an article about the Milwaukee heated jacket. While the jacket was very good, it was just not quite right to replace a winter jacket. The big issue lies in the fact that, by itself, it was quite warm enough. Especially in the arms. So I would find I had to put on another layer between my skin and the heating elements, which in turn reduced the effectiveness of the heating element.

This is where the heated hoodie is really great. The material is made from is basically like a jogging suit. But a bit heavier, so it's quite warm as is. It has the same heating elements and functionality as Milwaukee heated jacket. But, being a hoodie . I find I am able to put on a regular T-shirt (sometimes longsleeved), hoodie and then my regular winter jacket. And this combination works out really quite well. Beginning elements of liberty are brought much closer to my skin and consequently have much more affect. This also means I can run it on the lower setting and still have a similar effect. Usually, when I first leave the house I turn it on medium. Only posting at the high after I have been out for a while. Needless to say this extends the battery life by about an hour.

I should however mentioned that I've only tested this off to about -20. I have not tried going out in colder weather. Mostly because the sidewalks are not that clean. Makes it hard on my neck, and is a real mess in the house afterwards.

If I have to say anything against the hoodie, is that the battery pouch is a little bit awkward. In the jacket, it's a nice tight pocket. They keeps the battery in place and consistently oriented in a vertical fashion. The pocket in the hoodie is much larger and looser, causing it to travel in more of a horizontal position. Which can sometimes get in the way when sitting down. It is usually easily adjusted to fit in the void of my wheelchair back. Also, unlike the jacket the battery pouches on the inside of the hoodie. Meaning that if you have to change it, you have to open the hoodie up. This is not an issue for me yet.

After hoodie...
One item I've been looking at is an extension wire for the battery. That way I could leave the battery in the pouch on the side of my wheelchair and easement. The changeup while I'm out. However, I have only found one with a car adapter. Not only did it yet, so I'm not too sure if we will suit my needs.

So all told, the heated hoodie is great! For the price of the $150 (including the battery and charging unit) At Home Depot.ca (Pro tip: I found it to be about $20 cheaper in-store than online) it's kind of like wearing a portable electric blanket. It comes in four colors: Black, gray (I have this one), khaki and special edition red. If you have a disability that impairs your ability to keep warm, get one! Well worth the money.

I have also been wearing a pair of down camping slippers quite a bit. The original idea, based on my reading was that I could possibly wear these out instead of winter boots (given the fact I'm not walking anymore). They were after all kind of like sleeping bags for your feet and being down feather they are in fact we comfortable and warm. But not quite good enough to replace winter boots simply because the wind goes through them pretty easily which quickly translates into cold feet. Even with heavy winter socks…
I bought the red ones just to be different

That being said, the slippers are still extremely good and works just fine for short trips outside. For example, going from the car into the shopping mall. I'm finding I am wearing them a lot. Especially around the house.

Been made with down feathers the weigh practically nothing  (Less than 300 g for both of them!) and are extremely comfortable. Also, because they are feather I find that they keep my feet at much more of a Goldilocks temperature. Not too hot, not too cold… Just right.

They also have a very good, durable no slip sole. But because of my particular walking technique, I preferred to kick them off when I have to walk. It's easier for me to shuffle my feet in my socks.

I bought them from Mountain equipment co-op for about $65. A bit more than one we usually consider spending for slippers, but at the same time I'm using them much more generally then I would a pair of slippers.

I'm finding I'm very pleased with the slippers and recommend them. You can also order them online from MEC.ca On this link, you will find several different styles and colors of the slippers, ranging in price from $39-$89.

To summarize, both of these win the awesome award!

Monday, 5 January 2015

2014 In Comical Review

I thought the best way to kick off my first post of 2015 would be to review some of the more humorous/ comical/ facepalm conversations and moments brought to you by ALS. Some of these I posted on my twitter feed or Facebook, but should be good for another laugh ;-)

ok, I know you *can* but

On Using an Electric Razor

my helper, holding the electric razor in hand looks at me pauses and then asks "where do you keep the shaving foam?"

Somebody Tripped Me

back in August, when I fell and broke my right arm. One of my regular helpers arrives for the scheduled appointment. This is her first time seeing me since, of course she is surprised to see me in a cast and immediately asks "what happened!?"

I tell her the story about how my right leg let go for no apparent reason and I fell on my wrist. Breaking my arm.

She replies, "well, you sure were lucky that Jesus was there!"

Me: "yeah, I know, it sure felt like somebody tripped me."

With a confused look on her face, pauses, then asks, "what do you mean?"

"Well, I sure didn't fall by myself. Somebody had to trip me."

"… I don't understand."

Me: "… Jesus tripped me…"

Don't get me wrong, I'm all for allowing people their individual beliefs. Just don't use it as a way to tell me how "lucky I am".

Proof of Life

my insurance company actually required me to get my Dr. To fill out a form, which is essentially confirmed that I was still alive and could continue coverage. Essentially, I had to provide proof of life for myself.

The Spacebar Lady

I could not go without me telling this one. Back in May, befor I e we moved in and broke my arm. I had modified my desktop computer so I could boot it by pressing the space bar. However, if I'm already sitting in my computer chair I cannot reach it on account of disability. On this day I asked for help…

Me: would you please press the space bar on keyboard?

Helper: what is the space bar?

Me: the large rectangular key on the bottom of the keyboard, press it

helper: I'm sorry, I don't know what that is

me: the button you press the put a space between words!

Helper: I don't understand.

Speaking in French this time, we pretty much repeat the above conversation. Finally, I get it frustrated and ask: Didn't you tell me you recently finished a computer course recently for something like Microsoft office?

Helper says proudly: yes I did, I got 94%

Me: then how on earth do you not know what a space bar is?

I think to myself, 94% for what. Attendance?

Wheelchair Versus the Stairs

the wife and I had to attend a meeting to sign some legal papers. The location was changed to accommodate my wheelchair needs. When we arrived in the front lobby, me and wheels 2.0. We are greeted at the front door by one of the assistants saying something like "so glad you can make it! We are happy. You could make it. Everyone is waiting for you upstairs."

Me: "great, where is the elevator?"

Gesturing to the stairs, the assistant says, "we don't have one, everyone is waiting for you upstairs."

Looking down at wheels 2.0 I replied "I'm going to give you a minute to realize the likely what the problem is…"


It's funny how some people don't immediately grab the obvious.

The Coffee Incident.

I have Nespresso coffee machine. It is unbelievably easy to use. Granted, the power button can be considered to be a bit "camouflaged". but other then that, extreemly logical and easy to us. so one day  after almost 15 min. of trying to explain to my helper how to make a cup of coffee… This happened

Tuesday, 16 December 2014

Voxcommando and the Blue Snowflake microphone

As you know, I've been in progress of transferring my computer usage from the desktop to something more portable. My Windows Surface 3 tablet. Part of the reason for doing so is in preparation for the likelihood that ALS will eventually take or compromised my ability to speak. Setup is going rather well, but in the meantime my voice is still hanging in there! Which is great as this gives me another level of control over my computer environment.

Obviously, one of the first things I did was install Dragon NaturallySpeaking for dictation. And one of the first things that became apparent, was the built-in microphone on my tablet… To state it politely… Sucks for dictation. It is however just fine for things like a Skype.

Secondly, one of the biggest things that I have found to be missing from the Dragon naturally speaking basic and premium is the ability to execute macros by voice. Sure, the premium edition (which is the one I have, version 11.5) allows you to create some custom commands. But these extend to being little more than pasting predefined text… So far other than items like your address, phone number and perhaps a few passwords… It is not terribly useful. You cannot tell it to do a set of predefined actions or anything more complicated. Above all, there is no way to use the Windows key through voice commands. This removes very basic, managerial functionality from my desktop and that it use all the time. Such as snapping a window to the left or right of the screen…

Sure, you can do this in the Dragon NaturallySpeaking Professional edition, but you need to be prepared to spend over $500 and the a programmer.

This brings us to:

The Blue Snowflake Microphone

like I said, for dictation the built-in microphone on the tablet doesn't work very well. I was continually getting poor audio quality warnings and disconnections. As you know, if you use Dragon it recommends using a headset for the best results. Having ALS and no function of my Hands eliminates that option for me. So after looking around at a few desktop microphone options, and trying a few cheap alternatives. I settled on trying in blue snowflake.

I found it on Amazon.ca for about $50. It is small, compact and sits nicely on the top right-hand corner of my tablet. There are no drivers to install or manage. Just plug it in via USB and it works! It is advertised as providing a near professional sound recording quality. And though I have not tried it for that specifically. It works extremely well with Dragon NaturallySpeaking. Almost as well as a headset. I do have a few misrecognitions, but the frequency is such that it could be just the changes to my speech brought on by the wonderful ALS. When using it in a quiet environment, I have very few poor quality audio warnings.

Apparently, the microphone is somewhat directional as well. Which would obviously help with eliminating the background noise.

The one issue I have found is more to do with the tablet and anything else. It has a single USB port. Into which I have to run my eye tracker and the microphone, necessitating a hub. It would seem that the power supply from the tablet to the house is ever so slightly insufficient to power both (three if you count the hub) devices. The eye tracking seems to fail and reset a bit more frequently as opposed to when it is directly plugged into the tablet.

This could be a simple fix, I have yet to try it. But I may just have to find a different hub which has its own power supply.

Long story short, the blue snowflake microphone is a relatively inexpensive, and excellent upgrade to the system. The far superior to any other best top microphone I have used.


As mentioned above, Dragon NaturallySpeaking really is excellent for dictation but has a huge gap in what I would consider essential functionality for voice control over your computer. This gap is filled in beautifully by Voxcommando. In short, it allows you to the family easily set up predefined VoiceCommands which can be used to execute a macro on your system. It also comes with a whole bunch of predefined plug-ins which will also allow you to voice control your:
  1. Vera home automation system 
  2. Hue lights
  3. iTunes
  4. XBMC (Both local and remote)
  5. Windows media Center
These are but a few of the default profiles it comes with. As you become more familiar with it though is a whole bunch more plug-ins you can modify and work with. All relatively easily.

As you know, I've been playing with home automation systems for some time. I've tried voice control through Siri proxy and raspberry pi, writing my own Windows  speech recognition scripts and so forth to varying degrees of success. But right out-of-the-box, if you run Voxcommando in Vera or Hue mode. After a few minor settings like the IP address and generating XML (by pushing a button and voxcommando) you will have voice control over your environment. Which for me is huge! It is by far the easiest way to get voice control.

For me, I have found it works very nicely in conjunction with Dragon NaturallySpeaking. As a matter of fact, both programs are running right now I have Dragon actively dictating, with Voxcommando in standby mode. Where it passively listens but will not activate the command unless a prefix word is said first. So what I typically do, is I tell Dragon to "go to sleep" and then use my keywords followed by the command to activate voxcommando. Then, whenever you turn to dictation simply tell Dragon to "wake up".

As with anything, there is of course a bit of a learning curve. But, setting up the basic commands is extremely easy and the website provides some very good tutorials for getting started.

Voxcommando has lots of default Windows command you can work work to manage your environment. Including the Windows key. However, being the geek that I am and wanting to completely have dominion over my systems… It is very easy to marry up voxcommando with auto hotkey. This gives you complete control to do literally anything. Just to give you an idea, I've always found desktop real estate to be at a premium. Even more so on the tablet where screen space is limited. Using voxcommando with auto hotkey, it is very easy to create a script that will snap a window to say the top left of the screen. Rather than just the the left side.

The script for auto hotkey was also very easy to write. You could either write a whole bunch of one off the scripts that do specific things. But personally I found this to be cluttered and unpleasant to manage. I use a single script which is executed by voxcommando which passes in a command line parameter (e.g. SnapTopLeft) which is caught and then executed by auto hotkey.

If you use voice control for anything, or even want to give it a try. I highly recommend voxcommando. It is a free unrestricted trial, meaning all features are available but will require a restart after I believe 25 commands. If you want to buy it, it is only $40 Canadian which provides you with to license keys.

Friday, 5 December 2014

A Wheelchair Powered Holiday with Walt Disney

Before talking about the generalities of being disabled and taking a holiday at Walt Disney in Florida, we had one experience there that really stood out. To be honest, it's really the reason why I'm writing this post.

So on with show…

One day 2 we chose to go to Epcot Center. The weather wasn't particularly great, lots of rain and even a tornado warning in the morning. Shortly after arriving, I had the misfortune of driving my wheelchair over one of the collector pins someone has lost and getting a flat tire on my wheelchair. Needless to say this sucks at the best of time. It is exponentially worse on holiday! But how did Disney's staff dealt with it was truly exceptional.

Fortunately, this happened reasonably close to the entrance and stroller rentals when we went to seek help. Honestly I was expecting a little more than uses the phone and being handed a phone book. But the staff at stroller rentals (in particular Andrea, John and Elliott) truly went above and beyond to get me back on my holiday. Even though I spent five hours with them trying to fix the flat, they turned the day around. Here is just some of the efforts they made:
  • Went through their stock and equipment to see if they could make the repairs themselves. Once they could not they 
  • Offered me a motorized scooter rental for the cost of the deposit only. Would have been a $50 reduction.
  • Generous, but this wouldn't work for me because of my specific disabilities.
  • Offered to arrange transport of the chair back to our resort
  • Andrea took her private vehicle to go to the nearest garage to buy some emergency repair spray. This unfortunately did not work.
  • Andrea then tracked down the local dealership for my model, wheelchair and arrange for a service man to come out.
  • Although it took several hours for him to arrive, the staff would check in with me offer me drinks at no charge and even a blanket to keep warm (it got a bit cooler in the afternoon with the bad weather)
  • loaned me a manual wheelchair so my wife could take me to the washroom
The dealer was quite far from the resort so between labor and the callout fee, the repair would have cost us a bit over $200. Expensive, but it's not like we had a choice. At this point I would've considered the problem resolved with already a generous effort on the part of staff… But this is just where it starts. Andrea then:
My wife and I With Andrea (image right)
  • Give us Premium passes to the best area to watch the evening fireworks
  • one (mega) fast pass. Essentially, it permitted us to jump any line to any attraction in the parks.
  • A coupon for four deserts anywhere in the park.
  • When my boy came back from the Nemo exhibit, he was all excited and talking about what he saw. She went to her office and came back and gave him a stuffed Nemo animal.
  • Shortly afterwards, she asked about other characters. She then gave him dory as well (the bluefish) this really made my boys day.
  • She called the hotel to arrange for a "surprise". When we got back to our room, on the couch we found balloons, and activity book with crayons and a stuffed Goofy animal.
  • While talking with the hotel manager about a situation, the hotel manager offered to pay half the cost of the wheelchair repair!
Like I said, these efforts would truly above and beyond. They completely turned the day around. Sincerest thanks from my family to Andrea and her team at stroller rentals, Epcot Center.

The more general Disney holiday

Even though the wife is a huge Walt Disney fan and loves going to the resorts. One of the biggest reasons we choose to go was for its accessibility to the disabled. I have to say, it is well arranged for that.

Yes, that is me hanging off the left side of the bus
it is quite a different way to ride ;-)
When we booked our holiday with Disney, they sent us special yellow tags for our luggage. So when we arrive at the airport, we never even have to worry about them. They catch up with us at the resort. All we have to do is report to do Disney bus service. Which has a wheelchair lift as well.

We stayed the art of animation of animation resort in the wheel well motel (my boy loves lightning McQueen as well). It is the first hotel I stayed at which points to be wheelchair accessible, and it truly is. There is lots of room for me to get around in my wheelchair and, most importantly. They had a wheelchair friendly shower.

We toured several of the resorts. Starting with magic kingdom, followed by Epcot Center, Hollywood studios and finally animal kingdom. Throughout, I was able to easily take my wheelchair just about everywhere and even to a number of rides with my boy… Yes, in my wheelchair! Including a Safari at animal Kingdom!Even though I could not be right with him on all the rides as he had to ride with an adult and my wheelchair would take up most of the car. I could still share in the experience with him which was important for both of us.

Getting from the resort to the attractions was actually really easy. They provide a shuttle bus service and each has two or more places for wheelchairs. And because of the wheelchair, who are usually first on and last off. Which was great for the days where the weather was less appealing. What is more, all of the drivers were great and super careful about how they attached me and my chair.

On top of all that, I really have to hand it to the Disney's staff. In addition to the above story with the flat tire. Everyone was super friendly and helpful. To give you an idea, coming back from the fireworks at Epcot Center it was late, and pouring rain. My boy was only 4 1/2 was extremely tired and tried to fall asleep on me. We're all wearing ponchos so we were "reasonably" dry (relatively speaking of course). We past the somewhat random groundskeeper who saw this. He stopped us and handed us a spare poncho to try to keep him dry. No cost, no nothing. Just a thank you and a desire to help.

The Disney ethos is truly impressive.

If I had to hold anything against the holiday, too minor things. The first, being our fault. We mistakenly booked during the American Thanksgiving holiday. So it was extremely busy. Secondly, the companion bathrooms were a little bit hard to find and spread out. Not that I needed them often, but when I did…

All in all, two very minor things to an excellent Disney holiday. If you have a disability and are looking to get away with family. Highly recommended.