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

Snapdragon Buckles

1" snapdragon buckle

I like my grab it pack  No. I love my grab it pack  That said, it is equipped with the standard slide clips and as we've mentioned before, with the loss of the ability to pinch this isn't really working for me anymore. I just can't release the clip. So after doing some research online I came across a very interesting, military grade quick release by ITW Nexus called a snapdragon buckle.

Instead of pinch, the intention of these is to be a quick pull on a tab or a loop which releases the buckle. Far quicker and easier than slide clips.

2" snapdragon buckle

The problem is, these are fairly hard to find because at the moment most of them are designed for military supply. So unless you need a box 1000 of them, it's a little tricky to find where to order them from. I however got little bit lucky. I searched on the Internet and the supplier lists and fortunately there was one relatively local who is willing to help me out. He sold me 5 2 inch buckles and 5 1 inch buckles.

So with the help of my rehabilitation facility, I added some buckles to my grab it pack (a 2 inch buckle for the waste, and a 1 inch buckle for the leg strap) and a 1 inch buckle to my shoulder bag. Overall I'm pleased with how well this works for me. Check out the video below. I should however first point out that when I release the shoulder strap, I'm usually sitting down. 

Now, as I mentioned these are military standard product meaning they are very strong and durable which can make releasing the snapdragon a little bit challenging. Especially for the 2 inch buckle. In my case I found the amount of force required to release the 1 inch buckle the one-inch to be just fine. I did however have to have the 2 inch buckle modified. This was done by my father who simply took a file to it and poured down the plastic teeth on the inside of the buckle and on the mail portion of the buckle reduced a bit of the profile, and rounded the edges a bit too reduce the amount of purchase between the two pieces. Only took him about 10 min. And since then the 2 inch buckle works absolutely beautifully.

So the big question is: "where do I get me some?"

Well the only place I found online that will sell in smaller numbers is CP-gear. However they only have 1 inch and three-quarter inch buckles in their inventory (last I looked).

• 1 inch snapdragon buckle
• 3/4 inch snapdragon buckle

You can also go the route I did, which was to find a local supplier from the IT W nexus distributors list. Give them a call, the guy I spoke to was really great and very willing to help me out. http://na.itwnexus.com/content/list-distributors

Pro:

• great alternative to slide clips.
• Military grade, very strong
• reasonably priced, on par with the slide clip replacement

Con:

• military grade plastic. may require modification
• very hard to find. I wasn't able to find any in local retail

Home Automation, the 3rd Attempt

Introducing the "Jarvis Mod"

Wow. The Christmas holiday season can really get in the way of any plans you have for personal projects. I actually had the autohotkey script done at in early December, but all the obligations for this season and having the family around really slowed me down. Not that I am about that quickly anyway ;-)

Now I'm back to it. Introducing, the Jarvis mod for your Vera home automation system. But first a little back story.

We've talked before about how I'm starting to rely more and more on voice control for my computer. But that doesn't really help me out for the rest of my environment, so I started wondering if there was a way I could use voice to have some control over my environment. Ideally with minimal cost and using tools that are ready have.

The particular problem I was hoping to address was to be able to run my home automation system through my iPhone using Siri. I mean really, who would not want to be able to walk into their house speak a few instructions and have your environment respond to you in a similar way to what you see on Star Trek the next generation, or Jarvis (hence the name) from the movie Ironman.

Well, it turns out that there is!

Obviously, it's not going to be anywhere near as powerful as what you see in Star Trek or Ironman. However I can use Siri's existing functionality to send a message to my Vera Zwave home automation system. This is by definition a hack as it does use some digital duct tape and bailing wire to get this to work. But for my needs, it works very well. Check it out…

So how did I get this to work? As you can see from the video, I use the Siri to send a message to my computer via (a secret) e-mail. Microsoft outlook receives the mail, recognizes it and fires a rule to create a text file in a specific directory containing the contents of the e-mail. There is an auto hotkey script running on my PC which waits for this text file, parses its contents and then sends the appropriate notifications to my Z wave system.

It's probably easiest to visualize in the following chart.

The Jarvis script is at its core very simple. It is a simple text parser which reads the text for key phrases such as: "turn on the family room light". It doesn't use any fancy heuristic to figure out the meaning of the sentence. It simply looks for keywords in a sentence. In this case those words would would be "light", "on" and "family room". It doesn't care about the order, just their presence. I can however send multiple instructions via one e-mail using Siri. Each sentence is interpreted as one instruction. So I can have several sentences to fire several different devices. The script looks for the "." As a separator between instructions.

It is very easy to add more commands. Commands presently are:

• turn on/off the basement/living room light
• lock/unlock the door
• run scene <scene name>

Now obviously this is going to reason some security questions. As I for sure do not want some stranger firing an e-mail to my house and operating my devices. So I do have some security protocols built in. Outlook requires the message to be from a certain e-mail which will remain secret ;-) it is also easy enough to integrate a password requirement into the autohotkey  Script. This will be a simple day password (not yet implemented) where if it is absent from the script, Jarvis will not operate. It is also very easy to detect multiple, repeated attempts.

Also, I only activate my Jarvis script when I expect to need it.

Some might also ask why I chose to use autohotkey  n this way as opposed to simply firing the instructions via Outlook. While this is possible to do via the integrated VBScript in Outlook I would have to duplicate the same code into the Microsoft speech macros to get the same functionality. I.e. doubling my maintenance requirements. Any change to one would have to be made to both. In This Way, Outlook and the speech macros simply messengers. Any changes, modifications or updates are simply done in the Jarvis script only. Also by using autohotkey  it is very easy to add additional functionality to interface with any other system running on my computer. For example it would be easy enough to add commands to start iTunes and play music over my airplay system.

Unfortunately however, this Jarvis mod has been written to operate with my z wave system and PC set up. This means that unfortunately it will not be immediately portable into your environment. My intention here was to share the methods and show that it can be done. That said I will be including the text file with some additional instructions on how to do so. You will however require a basic autohotkey knowledge to know where to make the appropriate changes to your script.

Okay, I'll admit it… I just
wanted to use this picture ;-)

You can grab the Jarvis files here: the Z wave Jarvis Mod however the Windows speech macros are not yet included. Functionally, they will be nearly identical to the VBScript for Outlook.

(Update: as of 14/1/2013 speech macros are included and functional)

I will be working on a tutorial on how to properly set this up in improving the provided instructions.

So I think it's safe to say that the myth you can't extend Siri functionality or improve on your voice control functionality is pretty much busted ;-)That being said, I really should point out will once again that this script is more of a first functional prototype or a proof of concept rather than a final product. And by definition, is not really modifying the function of Siri or any of the other systems, but extending the functionality by tying them together through another script… By definition to me, this is a hack ;-) I will be periodically updating or reworking the script.

More Funny Business

 It's been sometime since I've been able to use a regular toothbrush, so for several months now I've been using an electric toothbrush. At this point in time it started to become a little more difficult for me to turn the toothbrush on, I lost enough dexterity that flipping the switch was becoming a challenge.

So, I took this problem to a couple of technicians for advice. We discussed several options for how to modify the toothbrush switch to make it easier for me to turn on and off.

At one point, I'm discussing this with the technician who would make the modification and we were going in circles about how to add a switch to battery box. Meanwhile the other technician has my toothbrush on the table and is playing with a metal block to flip the switch. He then says to me: "what if we were to mount a block like this one on your counter. This makes it very easy to catch the switch to turn on the toothbrush."

I give a moment's pause before replying with: "okay, if we do that… What happens to the toothpaste?"

"… Oh yeah… Right."

We then settled on the simple solution of gluing a rubber bumper to the switch…

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.