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.

Milwaukee battery powered heated jacket.

Jacket heating zones

Back in the fall, my father had his birthday and he's a bit of a wimp with the cold. So we thought that would make a cool gift to try to buy him the Milwaukee battery-powered heated jacket. Especially now that he will be spending more time Montréal and it's a lovely winter climate.

As winter arrives, he loaned it to me to try out for a few weeks as he was going to be away and I needed to go collect my son from daycare in my wheelchair (with the help of an assistant).

Winter has posed to serious issues for me, And sometimes you absolutely need to leave the house to attend appointments or whatever.A

First off is due to the amount of muscular atrophy, I don't have as much muscle mass to keep one. This my core body temperature is at risk of dropping much more quickly.

It would seem winter is getting a bit out of hand here in Montréal

Secondly, and is apparently a fairly common issue for people with ALS is the cold can really exaggerate muscular spasticity. I have found that on occasion, being outside at -15 or less (And this year we've had cold snaps down to -40 before Wind chill!). Even for a very short duration, say transiting the distance from house to car of around 40 or 50 feet can be enough to trigger a rather serious reaction. To give you some idea, on Christmas Day we visited my wife's parents place for dinner. When they left the house around midnight, I had to walk a very short distance to get to our warm vehicle. By the time I made it from the door to my vehicle, the muscles in my jaw tightened to the point that I could no longer hold my mouth. I had to talk soon my teeth. And my legs were stiffening up to that point I could barely walk.

The most annoying about this, is my body starts reacting this way and as though I have hypothermia. But I don't feel cold at all… Once everything warms up, I'm okay.

The jacket works as advertised and has three heating modes. When set for high, the heating zones actually do get quite warm (but comfortably so) for a duration of up to 4 hours. But I'm finding consistently of the less, closer to three.

The jacket is not constructed as a winter jacket. I would say more of a spring or autumn jacket men's for the person that works who is someone physically active in the cold, humid environment. The biggest issue I found using it as a winter jacket is it did not have a sufficiently good windbreaker. Once we got down to about -10°C, the call would go right through the arms and the non-heated areas. He really does require a shell.

Flame on!

We tried removing the lining for my present winter jacket (shell) and using this jacket in its place. While that works quite well, between the weight of this jacket and my winter shell. I found it to be quite heavy, and I was unable to move my arms, and as you know, my arms are suffering from significant atrophy. But with the shell on, want wise it was much more comfortable.

The temperature was controlled by the power button located on the left lapel. We push and hold for 4 seconds to power on, and when ready to go it lights up. Due to the placement of the button, and the difficulty of pushing it, I am unable to actuate it myself. I require assistance. But those light up quite bright, and my four-year-old finds that be pretty cool. :-)

The jacket, complete with the charging unit and one battery retails for about C$200 at Home Depot. I find this to be quite well priced in the jacket is very well made. But unfortunately, because it didn't need to use my shell over top of it I can't justify going to buy one for myself. It doesn't quite suit my needs, as matter of fact it complicates things a bit.

That being said, they do have a hooded jogging suit version which is much lighter and retails for C$150. I think this might suit my needs much better, It should be sufficiently Lite that would fit well in my existing winter jacket with the liner. It should not add as much weight or inflexibility. I plan on trying this out.

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.

• old webpage main interface.
  Probably a bunch of broken links, but you should be able to still access the lessons.
• lessons 01 – 24 root folder
• lessons 25 – 55 root folder
• root folder to everything ;-)

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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.

• root folder to everything ;-)

Dealing With Sleepiness & Fatigue

One of the unfortunate symptoms that ALS often provides is fatigue and sleepiness. For me this can often be extremely annoying as it usually starts by a round of pretty intensive yawning, which tends to cause for me some rather painful and unpleasant cramps in my neck and jaw. When these happen, there's nothing I can do about it other than wait for them to go away… At which point I usually yawn a second time which perpetuates more cramping…

It is not always the type of fatigue that makes me feel like I need to take a nap, just drowsy and lower energy for an hour or so. But if those cramps I really want to avoid.

So one option is to take a stimulant to help plow through the fatigue. I've tried a couple different types, and here's what I find works for me:

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Coffee has been a long-standing source of enjoyment for me, as evidenced in one of my first posts on this blog. There's just something about a good strong cup of coffee. I don't know if it's because I spent a number of years working at a volunteer fire station, where hanging around you'd have a cup of coffee and chat with the boys between calls… Or if it's more of a Pavlovian reflex to my very first serious girlfriend who worked at Starbucks (use your imagination).

Obviously, the active ingredient to help get through the fatigue is caffeine. It does give a relatively immediate kick, but it can also leave you with a crash afterwards. Also, you probably don't want to drink too much of it as it is acidic and other some circles of thought, having an acidic pH in your body can contribute to chronic illness.

If nothing else, too much coffee can make your stomach feel acidic and too much coffee as a diuretic which can cause dehydration and possibly leave you with caffeine headaches. So I usually limit my coffee intake to just a couple cups a day of espresso. Usually in the morning.

A couple coffee made his home is relatively inexpensive. However due to my dexterity limitations, I'm using an nespresso machine which puts the cost per espresso at about $.63 Canadian.

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Dealing with this illness review with very few options as there are no treatments. So I like most people in my situation taking huge collection of vitamins trying to slow the progress down anyway I can. One of these that recently added is Pamax ginseng.

Ginseng is another form of stimulants, but it also has antioxidant properties which is supposed to be good for your general health. One of the theories that exists under a more holistic schools thinking is that ALS causes its damage through oxidation and free radicals. Ingesting antioxidants such as ginseng are supposed to help prevent this type of damage.

At the moment I'm taking one tablet with my vitamins and morning, and on occasion to more in the afternoon when I'm having one of my bouts of fatigue. So far I've not found the ginseng terribly effective with the fatigue. Perhaps I'm not taking enough. Also I do find that it is much slower to have an effect than caffeine alternatives. Not to mention that taking ginseng in pill form provides no actual comfort or enjoyment. It's completely tasteless. For some of you dealing with ALS, swallowing can no doubt be a problem. That said these capsules are easy to pop in and add to whatever liquid you are able to consume.

Individually each pill is not very expensive, and prices for ginseng range quite widely. That said, so does the potency. Be sure to check the label.

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There is the huge world of energy drinks out there and there's no way I can, or intended to try all of them. But I have on occasion tried a red bull. It's essentially a form of soda, with a sweet and bitter taste. It tastes okay, not great my opinion but okay. The nice thing about over coffee, this is something that you drink cold making it much more appropriate on hot days.

Red bull does have some interesting ingredients, and you can read about them in more detail here. Here are a few points of interest:

Caffeine: Again would give you the kick and has a pretty immediate effect.

B vitamins: this is something that's supposed to be good and nourishing for your nervous system. It also gives a little more staying power to the levels of energy. As a matter of fact my doctor has even prescribed to me vitamin B supplements.

Inositol: A carbohydrate found in animal muscle reportedly can significantly reduces depression and panic attacks among others. However the dosage is apparently insufficient.

Personally, I don't drink much in the way of soda these days. So I tend not to drink red bull often. The times I have had it, I have noticed it to be pretty quickly effective, lasts for a reasonable period of time and did not give me the crash afterwards.

Cost about $2 Canadian per can.

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I originally started taking the occasional five hour energy after reading about it from another patient with ALS in the patient's like me forms. For the moment I find this is the most effective form. However I will say it energy doesn't seem to last quite five hours. Nonetheless it is plenty sufficient to get me through the around the fatigue.

There's a number of flavors, but here in Montréal I've only found two. Orange and Berry. For the orange, I don't particularly like the taste. But then again that's not why I'm drinking it. It will deliver pinch. I find the orange tastes excessively artificial for my liking. However, the Berry blend I find is actually quite good.

It's has some ingredients in common with red bull such as caffeine and vitamin B blend. It does however have a much higher concentration vitamin B. You can read more about the ingredients here. Again, here is some of the ingredients of note.

Vitamin B concentration: These levels are quite high and can result in the niacin flush. This is also what gives father energy some of its staying power. As part of this is the folic acid, which is another supplement my doctor has also prescribed. Folic acid, or folate, helps produce and maintain new cells in our bodies.

Caffeine: again, what gives it its immediate kick

Glucuronolactone: It has been shown to reduce sleepiness(see the footnote, not evaluated statement by FDA).

Phenylalanine:  sold as a dietary supplement to combat pain and depression. It actually works inside the body with tyrosine to produce dopamine, adrenaline, and build skin pigmentation.

When I'm really having a bout of fatigue, and absolutely need to stop yawning I find five hour energy is the most immediately effective. The nice thing is it's a very small container, making it very easily portable. So I'm out with the wife and kid, we can usually keep one with us. Now that being said, the way it's packaged is impossible for me to open on my own. It is covered in a vacuum sealed plastic buckle up and over the lid. This is impossible for me to remove on my own.

Each small bottle costs between $2 and $2.50 Canadian.

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Now, before running out and buying a bunch of energy drinks to solve all your ALS related energy problems. Keep in mind that they do come with a health warning and can have some unpleasant/undesired side effects. Please read this link for more information.

In my case, I have found that excessive energy drinks such as these can sometimes promote the feeling of anxiety and from physical standpoint aggravate my fasiculations. Making me twitch a whole lot more. Which intern makes me anxious.

So please keep this in mind, and consume these types of drinks sparingly. Not to mention, to consider the time of day before taking any it is. Having a five hour energy at 10 o'clock at night might not be in your best interest ;-)

Accessible Plates

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

Stay still dammit! I'm trying to eat!

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

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

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

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

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

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

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

AAAAAANYWAY… Enough venting about that.

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

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

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

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

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

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

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

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

Yup! Great product.

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

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

IPhone Jailbreak Fun

follow my attempts on twitter
#setmyiPhonefree

If you've been following my Twitter feed, you are no doubt aware that I've been playing with jail breaking my iPhone to see if I can find some additional functionality to make my life a little bit easier. I have found a few very good apps… And a lot of other things to sift through.

Here I will give a quick tour of some of the apps I've tried out. Specifically, I'm looking to find ways to improve my access to the phone and any improvements that can be made to Siri was an eye to trying to make it work with my home automation system. But first, for those of you who may not know… What does it mean to jailbreak your iPhone/iPad?

iOS jailbreaking is the process of removing the limitations on Apple devices running the iOS operating system through the use of software and hardware exploits – such devices include the iPhone, iPod touch, iPad, and second generation Apple TV. Jailbreaking allowing the download of additional applications, extensions, and themes that are unavailable through the official Apple App Store. (Source: Wikipedia)

If you would like to give it a try, the process of jail breaking is actually quite simple. Here's the information you'll need:

• life hacker: the always up to date jailbreak guide (these are the steps I followed)
• life hacker: why jail breaking is awesome!
• life hacker: before you do, things to consider… know the risks

Great! Now that that's out of the way, let's talk about some of the cool stuff we found.

Now if this is the beginning, there's an awful lot of stuff to sift through on the Cydia store. Most of it I don't find particularly useful, and a lot of it is out of date (particularly for the new iPhone 5). There is tons of fun stuff like applying seems to your iPhone. Not useful, but entertaining. For example, using the Winterboard app I now have an animated space invaders lock screen. Here's a list of apps I've tried and how useful I found them in coping with the disabilities provided by ALS.

Octopus Keyboard This is a keyboard replacement for the standard iPhone keyboard. Essentially it's a straight up ripoff of the keyboard you'll find on blackberries Z-10. Essentially it is an auto complete function built into it, popping up the words over particular keys. To complete the word, simply swipe upwards towards you typing area. I like this keyboard very much. A substantial improvement over Apple's auto complete function and perhaps the primary reason why I chose to jailbreak my iPhone. That said, with my dexterity limitations the swiping action can be a little bit tricky for me at times. Also I found it seems to work better on the iPhone if I turn off apples AutoCorrect. Also, I'm not sure that I can attribute this to the octopus keyboard. But I have noticed when I'm creating a little bit of a larger e-mail on my iPhone (usually through a combination of typing and Siri dictation) there is does seem to be a slowdown in responsiveness. I have no problems running it with IOS6. There are also a whole bunch of dictionaries that you can add to the keyboard for free. Cost: $5 USD octopus keyboard
Hands Free Control Does exactly what the title implies. Give you hands-free control to activate Siri. When enabled, you simply have to say the keyword (default is Siri) and if hands-free control is enabled Siri wakes up and waits for your commands. You can change the activation keyword features a comes preinstalled with five options and a number of customized sounds which are played when it activates or receives a command. You can also add your own custom keyword. So far I found this works very well and quieter environments. If there is a bunch of background noise, Siri is of course going to have issues recognizing your command (this is also a problem if you're using hands free to play music from your iPhone). It operates in low power mode to minimize strain on your battery. Nonetheless it is no additional cost and you can expect to see a shortened battery life. He does however have an option to only enable when it's on AC power. This is how I use mine, when pluged-in beside the bed at night hands-free is activated. This is quite useful, but not as much as I'd hoped. I'm looking to be able to tie it into my home automation system. Unfortunately Siri cannot open bookmarks or web links so I cannot fire the command to my vera home automation system at this point in time. I am however looking at running a Siri proxy in my home. If I can figure out how to get this rolling, that will make hands-free jailbreak several levels of pure awesome. I would literally be able to say "Siri, turn on the basement light"… Cost: $3 USD hands-free control
Assistant Extensions Unfortunately this is not yet compatible with IOS6. I have installed it and it doesn't run and a few things work. For example it will search YouTube just fine through Siri. However using assistant extensions to activate any of the system settings (such as toggle Bluetooth) it crashes the iPhone and reboots in safe mode. It promises additional chat bots, translator, YouTube integration and a few other features. It is also the building block for a number of other Siri plug-ins. Unfortunately none of those will work either until this is patched. But like I said other than YouTube nothing seems to work at this point in time. Here's hoping that when is compatible with IOS6 they will have a whole bunch more features to it. It looks promising… Cost: free… But unstable. Don't bother until it's upgraded. assistant extensions
Assistant Love This is another Siri extension which looked extremely promising and unfortunately didn't turn out to be quite as useful as I had hoped. Assistant love adds music integration to spotify and grooveshark allowing you to play from any of these sources as though you would a regular music. Unfortunately, living in Canada these services are not available :-( However, it also allows you to override the default navigation service. You could replace the Apple maps searched and directions with a number of other services providing you have them installed on your iPhone. For example I've replaced by default navigation voice search with that of Google maps. This is actually pretty cool. can't use an alias for a bookmark But the real promise behind assistant love, and why I bought it was that it also offered an "alias" functionality to start an app. In other words you could specify your own custom keyword to open a specific App. For example you could say "open my drive" as a command to open your Google drive or dropbox account. I thought this was great criminal exactly what I needed, unfortunately it will not accept home screen bookmarks nor a URL. Only an app. Had it done so, this would've been exactly what I need to interface with my vera home automation system. Other than that it does provide a few additional commands to toggle some settings. For example you can use assistant love to toggle Bluetooth/flashlight/Wi-Fi and your audio mode. I have found that being able to toggle the flashlight using hands-free control kind useful in the middle of the night. No messing with the light the bedside table ;-) All in all, there are some useful functionality within assistant love even without groove shark and spotify and worth the price. Cost: $2 USD assistant love

So for me, the next step is to look at setting up a Siri proxy. This is far more complicated and if I can get it working it will answer my needs for tying it into my home automation system. I would very much have preferred to use the aliases in assistant love. But will give this a try instead. If I can get this working… Well, check out what can be done with it!

So all in all, there is some very good apps available if you jailbreak your iPhone to help make it more accessible to you. Communicate by phone Joe broken for the time being and continue to look for new apps/functionality. The is also a lot of fun apps to be had, for example check out barrel. A real fun way to turns pages on your home screen.

These also check out some other reviews and writeups on these links. If you're considering jailbreak in, this is a great place to start helping you decide if it's worthwhile or not.

• best apps on Cydia gizmag review
• best jailbreak apps and tweaks life hacker
• make your iPhone read your mind by life hacker.
• jailbreak tweaks for IOS6 Idownloadblog.com

A First Prototype…

One of the unfortunate side effects of dealing with ALS is having to deal with the progressive loss of balance. Usually resulting in the unexpected face plant. In my particular case, my balance is still pretty good but I am prone to falling from time to time and as most of my losses in my hands and arms. I am unable to properly protect myself in a fall. And once down, getting up is starting to become rather difficult. I have had a few occasions were fallen and required help to get back on my feet.

Nevermind the subject of risking more serious injury…

So this got me thinking. What happens when I'm by myself and I fall somewhere in the house and I'm unable to get up? How do I call for help?

Well, there are for sure services like the life alert bracelets and the "help by fallen and I can't get up" panic button.

This got me thinking, sure I could sign up for one of the services. But I already have a smart phone which I use quite regularly for my home automation systems and my television remote control. Not to mention it has a Siri voice recognition, which is one of the reasons why I bought it. So do I really need the life link service? Other than the built-in fall detection, my iPhone will cover my needs. Thus the question becomes, how do I keep up with my all a time? With nonfunctioning hands, I need to keep it attached to my person while remaining accessible. Not to mention, anything attached to my belt, one involving a clip to dock the iPhone are pretty much out of the question. I don't have the range of motion to access my belt, nor the dexterity to unsnap the phone from a clip.

Now, I bought my grab it pack because it had the thigh pocket for the cell phone for just these reasons when I'm out of the house. But it's not quite as practical to wear all day while I'm home. Consequently I started thinking about something similar to a fighter pilots G suit. Below is an image on the right that this pilot is flight information strapped to her thighs. I realized that this is actually a pretty safe place to carry my iPhone. Should I fall, it'll remain accessible and it is very unlikely that on the top of my thigh my iPhone will receive a direct impact. And I know from experience with my grab it pack  that Siri will work just fine at this distance (assuming there's not too much ambient noise, but that's the same anywhere)

How could I do this with my smart phone? What could I adapt?

It turns out that Belkin has an armband product to hold iPhones for when you go to the gym. It is quite secure and will allow you to use the touchscreen through a plastic cover. It is however sized for an arm and not a thigh… Just a bit of a size difference, even with atrophy. Nonetheless, this is pretty close to what I'm looking for and reasonably easy to adapt. It was also reasonably inexpensive, around C$25. It will definitely work as a first prototype.


So with the help of my re-adaptation facility, we went about extending the length of the armband strap so it would fit my thigh. We replace the Velcro with a one-inch snapdragon buckles make it easier for me to remove, and less fidgety than messing with Velcro, i.e. Once I set the size, I don't have to adjust it every time. We also added a vertical loop so I can attach it to my belt or might grab it back if I so choose. The vertical strap is essential to prevent the armband from sliding down my leg. Don't want it to be to type all the time…

I know, looks a bit dorky

This is what we came up with...


I realize that this looks a bit dorky. But the fact of the matter is these days I have to focus on function over fashion and if it gives me a degree of ease of access and safety within my own home… So be it. Dorky.

Now, this works reasonably well. But not perfectly. First of all, in order for the iPhone to fit within the Belkin case it has to be removed from any other case. E.g. the iPhone has to be "naked" to fit properly. Also is an extremely tight fit making it nearly impossible for me to insert or remove the iPhone to the Belkin case myself.

The plastic cover over the screen does work and allows me to use the screens touch functions. However it is not completely flush to the screen, removing some of its sensitivity. It is also a little bit tricky to properly access the home button. But not impossible.

Finally, the strap from the hold and position from my belt is essential. That said, options of where to attach it to the Belkin case were very limited and the only place it could be attached without compromising the accessibility of the iPhone in the case causes a slight rotation of the case when it's attached to my leg making it just a bit uncomfortable. What do you expect, first prototype ;-)

I really should mention that I am actively considering getting one of those life alert devices and it does have some significant benefits that should not be overlooked. One of the reasons why I'm looking into this is that my needs are not quite there yet and I really do want to minimize the amount of devices and things I have to drag around with me. I'm looking at the phone as a viable option because I carry it all over the place. I use it to control my TV and my home automation system. And of course, Siri for communications.

Voice Banking with Model Talker

Although that I'm not showing any definitive changes to my voice at the moment (that I cannot attribute to paranoia anyway) and knowing the progression of ALS, I decided that it would be wise to create a voice bank so that when that unfortunate day does come.  I'll still be able to communicate using speech to text technology and it will sound somewhat like me.

Creating a voice bank is best done when your voice is still clear and strong. Definitely something that should be done before symptoms start affecting your speech patterns. Reason being is any speech impediment you may develop from ALS will consequently be recorded in the voice bank. Not to mention that the recording process is actually quite long. It can take quite a significant amount of time and effort to get done properly. And even not showing symptoms, it was at times quite fatiguing.

I used a software called model talker which required me to record about 1600 phrases. Most of the phrases were quite simple, with many references to the Wizard of Oz. There were however some reasonably challenging tongue twisters. This software then takes all the phonemes and uses them to create a text to speech file. This file can then be used within the Windows text-to-speech systems or (so I'm told) used with other hardware such as Dyna Vox.

say hello to my little voice bank

Model talker is presently in beta phase. So you can expect the possibility of some instabilities at times. Personally I did not counter many of these. The issues I did have had to do with setting up the recording in my own environment. For some reason any microphone I tried on my home computer was also recording a white noise or hum. After trying multiple microphones I could not isolate the cause. Best I can figure is this EMF field somewhere in my house, or noise from the power bar which is disrupting my audio recording (for example, check this video. The noise in my recording was not quite so pronounced enough to disrupt the quality of the recording). This is not something I could blame on model talker. I ended up having to record my voice and my rehabilitation facility. It was a bit inconvenient to go there so frequently, but I felt it was a necessity to create the voice bank. Recording their went quite smoothly.

The people at model talker were extremely helpful and responsive. Whenever there was a problem on the initial calibrations they would get back to me very quickly. Also once I submitted the final files, I was expecting it to take up two weeks to get back. They had my full voice bank ready for download by the next afternoon.

On a side note, if you need to make a recording of your synthesized voice as I did for this blog and you're using speech recognition for dictation… Be sure to turn off the microphone for speech recognition. I forgot to do so the first time and the speech recognition was actually dictating from my synthesized voice… LOL!

This download included two versions of playback software which could be used in addition to the Windows text-to-speech functionalities. So far, my best results seem to have been from using model talker 2. I was a little dissatisfied with the initial playbacks and found my voice didn't sound enough like me to make the effort worthwhile. In particular there seemed to be too much of a gurgle. However after tweaking some of the settings (unfortunately model talker 2 didn't include any documentation for this) I found that setting the phonetic target cost down to about 20 made for a significant improvement in the gurgling issue. I'll probably be able to improve on it further once I figure out more about the other settings.

Here, listen for yourself ;-)

• Pike synthesized voice sample
• Pike synthesized voice chaos theory

can you hear me now?

However, being beta I did have some difficulties in recording the samples. The record option fails and changes to the synthesis settings do not seem to be retained between executions. That being said, it is presently free for you to create your own voice bank.

Punch Winter in the Face

This is a little something I actually should have written about last year...

There's no doubt that winter can really cramp your style and encourage a healthy dose of cabin fever. But, from time to time you will still have to get out of the house and in the deep cold, that can be treacherous to say the least. In my case, if my hands get cold which can very easily happen and happen quickly. I lose whatever remaining dexterity I have. My hands ball up into little claws and I can no longer do things like turning doorknobs.

But that's not really even the worst of it. Snow and ice is notoriously difficult to walk on, especially for those with balance issues. So last year I was still using my walking cane which we discussed back in "finding a good shillelagh". But in winter holding onto the cane can be a real problem.

my hands are starting to take this shape

Regular gloves don't provide the wants to each finger and to be a real pain in the butt to get on as my fingers are starting to claw inwards. I can no longer straighten them.

Mittens are even worse. Yes they are warmer, but does nothing to keep my fingers from rolling into the palm and the mitten seems to actually help keep my fingers rolled towards the palm. Very warm, but my hand becomes functional only as a club. I can't grab hold anything at all. What little remaining dexterity I had is now completely gone.

This led me on a quest to find technical climbing gloves. Also known as three fingered mittens.These are literally a cross between gloves and mittens.

MEN'S HIGHCAMP 3-FINGER MITTS

These were rather difficult to find. Most retail stores don't carry them, they're more of a specialty item. What's great about these is that they allow you to keep just enough dexterity to better hold onto your cane. As you saw in the previous article about finding a good shillelagh  I had a T-shaped handle and this was extremely difficult to hold onto mitten's as I couldn't get my index finger to the opposite side of the shaft of the cane. Gloves were no better as they were big and bulky.

The ones I found were by OR and made from PrimaLoft. Making them extremely warm And the fact that the index finger is free means I can properly grab and hold my cane.

The nice thing about it as well as if I am ever outside without my cane, I'm not obligated to put my index finger in its own pocket. I can keep it with the rest of my fingers and wear them like a regular mitten. As a matter of fact, we had a cold snap last week were dropped to -40°C with the windchill. We unfortunately had to walk a fair way away to get to our Jeep and there's no way my hands were very warm by the time I got there as I can't access my coat pockets. Not to mention that if I happen to slip with my hands in my pockets, I have no way of protecting myself and a fall.

So this is exactly what I did. It worked out great. Got there with toasty warm hands.



Unfortunately, since last year have had some changes in my hands which makes holding a cane near impossible for me anyway. I can no longer fully close my hand properly, several tendons have constricted. But even so, these are very good quality mittens and I still use them as required. That said, these are well worth looking into as an alternative. Especially if you are still walking with a cane or other walking aid and need to go out in the blistering cold.

Pro:

• great alternative to gloves or Mitt's
• primaloft is very warm
• much better for grabbing a T-shaped cane

Con:

• hard-to-find. Not in most retail stores.
• A bit expensive for gloves at about $100 Canadian. They do however come with a lifetime guarantee

Cost: about C$100

http://www.outdoorresearch.com/en/or-gear/gloves/mens-highcamp-3-finger-mitts.html

Status Update

Its been several months since I posted a status update, it probably little overdue ;-)

Strength and dexterity wise it's been a long slow downward progression from my arms and hands. My hands have become particularly quite weak and I have lost the opposition between my thumb and index finger, I can't really pinch anything anymore. I have some solutions for this for my Grab it pack using was called a snap Dragon buckle. I will post more about these later… Suffice to say, the snapdragon buckles are working great!

My arms and shoulders are also quite weak, I'm no longer able to lift my hands up over my head providing me some interesting challenges for things like washing my hair.

My legs, haven't really seen much change. I do have some balance issues which I say have not really changed, and I still fall down or trip once in a while because of them. They do however suffer from spasticity at night, making getting a restful night rather tricky… Add to that my dog in our bed… And a three-year-old who likes to come visit. It's odd, it only seems to happen at night. It lasts for about half an hour in the morning and then after that they pretty good for most of the day. Getting up out of chairs has become more difficult, but I do think that's more because I shoulders than anything else.

I'm still receiving weekly IVIG treatments, we did go up to 80 g six months to see if it made a difference. I didn't see any benefits so we went back to doing 40 g every week. It's kind and nice to be back on a shorter schedule as opposed to spending about eight hours after Nero. It was never too big of a deal, I always viewed it as my job ;-)

Yesterday I was back at the Neuro for another follow-up, and it looks like I might be in line for a clinical trial. It took a long time the line this up because my condition isn't classic ALS. There were some anomalies which makes me a less desirable candidate for trials. But it looks like there's one in line so, fingers crossed!

And hooray for experimental drugs!

I'll try to make it a point from time to time to post a little something about how the trial is going and if the drug is having any positive effects.

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Home Automation, the second attempt…

Well, it's that time year again. Winter is coming… For me, as with most people with ALS dealing with the cold and snow can be quite a problem.Aside from the obvious problems of actually dealing with the snow, tripping, falling and of course cabin fever from being stuck in the house, I still actually do have to get out from time to time for various appointments and occasionally reasons of sanity.

I'm to the point now where I cannot get a coat on or off by myself and there are times during the day where I still need to go out. This usually means a quick run from the house to my Jeep. Spending as little time outside as possible. The Jeep fortunately has a remote starter so it'll be nice and warm by the time I get there. Fortunately, handicap parking also means I'm usually quite close to the entrance of wherever I'm going. So usually I'm only outside for about a minute, before I'm back inside again. Not enough time to really affect me.

Hey dude! Found your keys!

However, when I get home I do need to get back into the house rather quickly. Because if my hands get cold, I lose all the remaining function I have in my hands…and this can be a problem, as it usually means fumbling for my keys to unlock the door. Keys being small items, this is usually a problem and last year I was almost locked out of my house on more than one occasion.

This winter, I've lost significant dexterity in my hands since then…

So I set out on a quest trying to figure out if there were remote options to get into my house. The first item that came to mind was using an RFID card which I would simply need to hold near the lock. We had these for security reasons at work, and they work quite well. With the help of the social worker we contacted a local locksmith, he looked into it and came back with a quote of over $3000!

You said how much!?

Needless to say this quote was insane.

I figured my next bet would be to look into home automation options. I did some research around the Internet, but got little bit concerned about the set up. So I contacted a local installer. I explained to him my needs and he suggested a zigbee set up which would've cost upwards of $1000 for just a controller (the controller alone is over $500) and the door lock. This zigbee system also required licensing fees…

Needless to say, this book was also insanely over budget.

So I settled on building my own Zwave set up which I purchased from http://www.aartech.ca/. I called up the staff and spoke to a fellow by the name of Michael. He was extremely helpful and actually help you modify a little bit of my order. So, with his help I went about purchasing a controller lock combo for $400 and just for kicks I added a couple light controllers. I don't really need the light controllers yet, but I have one in the basement by my computer and it sure is handy to be able to turn the light on from upstairs so I don't have to navigate the stairs in the dark. The switch at this top of the stairs is starting to become a little bit difficult for me to reach, and I have concern for falling…okay, I guess this does qualify is a need ;-)

Set up of the controller was a little bit trickier than I thought it would be. Mostly because it we made the mistake of getting a little over excited and plugging in one of the light modules first. So what happened was, the instant we powered up the controller it immediately tried to connect to flight module. Blocking us from configuring it.

You can also can read more about the controller here: http://micasaverde.com/

So word of advice if you buy one of these, plug-in and set up the controller before you do anything else ;-)

Installation of the lock unfortunately cost me an additional hundred an additional $150 because the hole for my old deadbolt was a bit too small and we didn't have the tools to do it ourselves. So had to hire a locksmith. Kind of annoying, because if my hands were working this is something I could've done myself… But then again I wouldn't need the remote control if I could… I guess, the good old catch 22.

Once the lock was installed configuring it was really quite easy, once I got the master code in (my hands weren't cooperating). And now that everything is set up it works really quite well. I'm very happy with it.

On nice days, I can simply use the keypad. Or if I so choose, I can unlock the door or turn on any of the lights through any web browser, or smart phone. This means I can actually be sitting in the warmth and comfort of my Jeep or taxi  pull out my iPhone/iPad, unlocked the door and run into the house. And once in the house I can remotely lock both the Jeep (from its remote starter) and the door via iPhone or iPad using one of the mobile apps or the web interface.

One of the really fun things about the controller is I can set up to provide me with notifications. Meaning that it will either send me a text message or an e-mail, whichever I choose on certain events. For example, it can send me a message if the door is unlocked or if a certain key code is entered. I think this is pretty handy if you have kids who are due home at a certain time… This system can also be integrated to many of the others the waste product's.

At the moment I'm using the Vera mobile app. It's free and works quite well. There are several on the iTunes store, and some of them are ridiculously expensive for what they are, especially considering that there are free alternatives. Such as this one…

So, all told I got my house set up with the home automation system for a little less than $700. It would have been less if I didn't have to hire a locksmith. It really didn't take long to set up but I did need the help of somebody with functioning hands for simply plugging in the devices and the controller.

Pro:

• relatively easy to set up
• much cheaper than many of the alternatives
• very easily accessible through the web, smart phones and tablets (I have both an iPad and iPhone)
• can relatively easily be tied together with other automation through your PC…I'm working on something, more on that later ;-)
• shipping from http://www.aartech.ca/ was blindingly fast

Con:

• $400 is still a pretty hefty hit in the pocketbook.
• I've had a few synchronization issues over the Internet with the door lock. it works fine but does not always report the correct state. This does not seem to be an issue when I'm on Wi-Fi

Cost breakdown:

• $400 for the Vera 2 controller and they Yale lock
• $80 for two light control units
• $150 for the locksmith to modify the door and installed the lock.

Recommendation:
if you're looking for some environmental controls and need a less expensive set up, this is a great way to do it and the guys at http://www.aartech.ca/ were really helpful.

metal wallet

I've been meaning to write about this wallet for some time, but somehow it keeps getting put on the back burner.

Anyway before I discovered the clinch wallet, this accordion style metal while it was suggested to me to help me access my credit cards. In short, my traditional folding leather wallet credit cards were sticking and becoming very difficult to get out. This as seen on TV metal wallet put open a fan and allow the cards to sit rather loosely.

In theory this was a good idea, but in practice it didn't really work out so well. As I was losing considerable dexterity and pinch strength between my index finger and thumb, the wallet which is closed by a little plastic clasp became very difficult open and surprisingly, due to the loss of dexterity it wasn't it easy to access all of my cards as we hoped it would. In particular the ones on the outside near the metal covers. Those were very difficult to get out.

Not mentioned, the idea of having the cards loose makes it easier to pull them out once you have a hold of him but if you happen to drop the wallet (which happened to me in the checkout line) the wallet kind of explodes when it hits the ground and now you got 10 or 15 cards scattered all over the place. Needless to say with dexterity problems this is a real pain in the butt…

By itself I found the aluminum wallet was insufficient to replace my regular wallet completely. Consequently I found myself carrying another item to organize my stuff. A regular wallet would carry my cash and ID, and this aluminum wallet would carry pretty much exclusively just my cards. Although you could put your ID in, it's really inconvenient if you need it… You have to take it out of the wallet to show it.

It's been my experience so far that while dealing with ALS, simplification and minimization is best. Less items I need to manage and carry around the easier my life is. This aluminum wallet ended up adding to the list of things I needed to carry around…


On the plus side, the wallet is a very inexpensive to try and very easy to find. I found mine at Canadian tire for about $10. If you care reasonable amount of grip strength and dexterity left, it might be a viable solution. Personally however I didn't really like and can't recommend especially when there are alternatives such as the clinch wallet. Even so, I used to this matter wallet for probably almost 6 months and for most of the time it worked out okay. Not good, just okay…

Pro:

• inexpensive to try, only $10 Canadian.
• If you still have a reasonable amount of dexterity and pinch strength this might actually

Con:

• if you have weakness between your thumb and index finger, it is very difficult to open the latch
• once you've popped it open, don't drop it. You'll have cards everywhere
• by itself is insufficient to replace a regular wallet. So I found I ended up carrying another item to organize my stuff.

Conclusion, can't recommend it…

The Funny Business of ALS

Obviously, having ALS in of itself is not that funny. Every day is a challenge and things just don't get any easier. However, I've been finding that it has put me in some situations that I just can't help but look back on after the fact, and shake my head in disbelief and giggle about it.

At the moment I get a lot of social worker help coming through the house for various reasons and a also see a lot of professionals who try to help out with advice or find solutions. For the most part they are generally very good. But every once in a while I'll see a new person who isn't quite as on the ball as the rest and something odd comes out of the conversation. When I look back on those situations, I can't help but roll my eyes and chuckle.

I thought long and hard about posting some of these here, but I figured a little levity would do this blog some good. Just for the record, I'm not complaining. I very much do appreciate the services…

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Pass the Salt…

Every couple weeks I get the social worker to come to the house to help me prepare some large meals which are then freeze for reheating until the next visit. The way this works is the helper essentially acts as my hands and follow my instructions, with my recipes. This usually works out really quite well.

On this particular day, I had a Haitian lady to help me out who was very nice and I've gradually learns that the Haitians tend to do things a little bit differently in the kitchen, which is fine. 

This lady in particular was washing everything quite fanatically. For example she would wash and canned goods before opening them and any of the utensils we might need. Even though they were coming out of my clean drawer.

Anyway, as the cooking progresses and I'm not really saying anything about her cleaning habits as after all it's better to be safe than sorry we get to the point where we need to add a teaspoon of salt to the recipe. Now personally I prefer to use sea salt, which generated the following conversation:

• me: "now please add 1 teaspoon of salt it's in the bowl beside the stove."
• helper lady picks up the the salt and takes a teaspoon out and stares at it for a second. She then asks: "do I need to wash the salt?"
• me: "no, you do not need to wash the salt… But feel free to try"

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No More Soap…

We were also provided with a cleaning lady every couple weeks to help take off some of the pressure of managing the home. This lady in particular did an okay job. Not great, just okay.

One day she's cleaning the bathroom upstairs and she calls me up. When I get there after navigating the hazards of the stairwell, she proceeds to explain to me how she cannot wash the bathtub because we do not have any more of the vim soap in the spray bottle…

• cleaning lady: "I'm sorry, I don't think I'll be able to finish the bathroom. There is no more spray soap in the bottle, so I can't spray the tub before scrubbing it."
  She then reaches for nearly full bottle of liquid vim soap on the counter.
  "I only found this under the sink, and I can't spray it"
• me: I stare at her for probably 2 seconds and I'm pretty sure I had my mouth hanging open in disbelief.
  "So why don't you put this up on the sponge first and then scrub the tub?"
• cleaning lady: pauses for a second and then says "yeah, I suppose I can do that…"
• Me: I leave shaking my head before she sees me do the double face Palm