Status Report

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Microphones & Voice Recognition

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

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

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

Wired headsets

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

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

Rocketfish PS3 Headset 

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

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

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

Corsair HS1 Gaming Headset

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

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

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

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

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

This microphone retails for about C$100.

Wireless headsets

Plantronics Backbeat 903+

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

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

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

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

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

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

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

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

Logitech BH870 - Bluetooth

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

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

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

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

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

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

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

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

The battery will last several hours.

So far this is among the best options I have found using voice recognition wirelessly on my PC.

Dragon microphone

This is a free app available from the iTunes App Store and I know that android offers a similar app.

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

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

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

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

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

Conclusions?

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

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

so where are we at today?

At this point in time I'm still reasonably functional in my abilities.

The biggest issue these days are my hands and arms. I have very little dexterity remaining in my hands and I'm unable to grip things efficiently. My shoulders and arms have both become quite weak and they can't raise my hands past my shoulders.

My balance and endurance however seems to be improving. I'm still a little wobbly when I walk and I haven't fallen in some time. Getting up from sitting on the floor is quite challenging. On occasion I do use a cane, not so much for mobility but more for resting against my stop and as a social cue to people around me.

I am presently receiving an intravenous immunoglobulin (IVIG) treatment at the Montréal Neuro once a week. I originally started this treatment back in September for a six-month trial, it didn't seem to be doing much of the time but when we stopped for a month in April began to show rapid degeneration. Since I went back on the treatment (with an elevated dose), things seem to be improving. But nothing in my hands and arms…

 IVIG is not typical for ALS patients, however in my case my EMG test showed some markers that I might respond to it.