Over the last several years I've been dealing with various stages of disability thanks to ALS. My goal is to share solutions and review various products/tools/devices that I have found particularly helpful.
Some of you may have noticed that under the "things I'm following" widget I have linked to spring pad. I just like to take a moment to point out some of spring tides usefulness, it's a very good and easy way to publicly share links that are of interest to you. It's kind of a public bookmarking system. He keeps things much more nicely organized than sharing on other social media sites like Facebook.
For the purposes of this blog you'll find a number of notebooks where, I would like to take just a moment to point out two in particular.
The first is a recipe notebook. Here I'm going to post links to recipes that are very easy to have pre–prepared and dump into a slow cooker or some other very easy method of preparation and cleanup.
In my case, I try to help out around the house still by making sure meals are as ready as I can make them for when the wife gets home. I do this I getting some help from social services once every two weeks to help me prepare meals. One thing that I have found incredibly useful to do is have the social worker prepare all the ingredients before hand, dump them in a big Tupperware and then when it comes day to cook I simply have to dump everything in a slow cooker.
This way the wife comes home to a fresh, hot meal that has very little cleanup for her to worry about. Believe it or not, this might not seem like much but even with my disabilities this amount of help from my wife removes a huge burden from her.
The second notebook is one that came about through a little bit of frustration and trying to get some items to work properly for me. So in the spirit of the life hacker website, I've created a notebook which has various hacks to devices and things around the house that make my life much easier.
Right now there's not much in the second notebook, just a hack on how to modify the Griffin Beacon to run on AC power. Be writing more about this in another post, but this should be a good idea of the type of links I will be posting.
So be sure to check up on my spring pad from time to time! You'll hopefully find a collection of other useful links ;-)
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.
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 ;-)
$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.
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.
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…
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"
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…"
We all have our little vices which give us a degree of satisfaction and pleasure in our day-to-day lives. Mine, as previously discussed in this blog is a really good cup of coffee. For me this is merely an essential way to start the day. Many of you however they also enjoy a good smoke with your morning cup of Joe.
Before I continue however, I really should qualify this post by saying "I am not a smoker". Okay. Now that's out of the way, I can get on with the story…
On a recent visit down to the ALS clinic at the Montréal Nero, I got involved in the discussion with the occupational therapist there and she was telling me about an older woman who'd really enjoy being able to continue smoking but was having significant difficulty in holding the cigarette. This conversation reminded me of something some of my friends had tried, which is the E–cigarette. Also known as an electric cigarette.
I personally can't vouch for the taste, but I know my friends who tried it quite enjoyed them and they found them to be very practical. So after telling the occupational therapist about that E–cigarettes, I decided to look into them. The following is copied from the e-mail I sent to my occupational therapist on the matter.
These might be very interesting for people who wish to continue smoking with motor disabilities for a couple reasons.
you don't have to light them. They are battery-operated and rechargeable. I even saw some that operate without a switch, the "tobacco flavor" is activated when you inhale.
They burn cold and this is a big deal because if the user happens to drop them, they cannot set themselves on fire
They appeared to be much cheaper than regular cigarettes. One drop of flavoring is good for about 250 cigarettes and it costs about $10-$12
electric cigarette is reusable, so the initial purchase might seem a little bit expensive. But you make up for it over time.
This seems to be huge number of flavors to choose from as well.
There is no secondhand smoke. Electric cigarettes simulates embers on the end (glows Orange with an LED) and even provides a smoke effect when you exhale which is just water vapor.
For people who have motor disabilities holding a small items such as this, because it does not burn hot you can put all sorts of foam expansion rings onto it to make it easy told on two… Like the ones I have on my shaving razor and tooth brush ;-)
a YouTube video with David Letterman and a "smoking demonstration"
There's a very large number of Canadian E-smoking sites selling these. Here's an example of one http://esmokercanada.com/e-cigarette-starter-kits. I must admit, given the costs and benefits over regular cigarettes I'm almost tempted to try one myself. I'll let you know if I do, but in the meantime if you do please post a comment and let me know how you like them. I'd be very curious to know.
I know, I'm behind on my posts.For the last two weeks or so, I have started to realize that I do in fact have need for more home automation. Especially because winter is coming. So for the last while I've been directing my efforts to researching some of my needs. I will post more about this a little later. Suffice to say I found some interesting stuff ;-)
That said, I've come across two very interesting pieces of software that I feel are worth mention.
Alternative Voice Recognition.
I've been using Dragon dictate software quite a bit over the last few months and I discussed my usage of it here: Dragon gamer post . for the most part I find it works extremely well. It's dictation functionality is far superior to the speech recognition that comes with Windows7.
One of the reasons that helps me decide to buy it is that there was an option to purchase a gamer pack which would give you voice access to various games. My particular interest was World of Warcraft. This gamer pack was provided by a company called Vox enable and up until recently it work really quite well. However with the latest war craft expansion pack, I seem to have lost my voice functionality from Vox enable. I've tried numerous times to a hold of some support from the website, reinstalling and updating Vox enable. But to no avail.
From what I can tell, the version of Vox enable that I purchased his version 6 and with the WoW expansion they patched it to version 7. This seems to indicate to me that I will have to repurchase Vox enable to maintain the plug-in to war craft. In other words this will cost me another €20.
Needless to say I'm not terribly happy about this, nor am I pleased with the customer support. I have had zero responses to date.
This is led me on a bit of the quest to try and find some alternatives for voice integration to war craft.
I've tried playing around with the windows speech macros on my own to get some idea as to what I could do. I've had some success with it, but only really just gotten started…
But a piece of free software I found it seems to work very well is by a group called killers software (don't let the icon fool you). It seems to work very well but does require you to create your own templates. Once are provided are kind of tailored to their own characters. That said creating your own template is pretty easy.
I've only used it a little bit so far, but it does work really quite well and seems to be more responsive than a Vox enable. It also has a whole bunch of additional functionality for other games and software such as iTunes.
All in all, for the price of a free this software seems to be very good and well worth a try.
Camera Mouse.
Now, this piece of software I've not actually tried and then kind of hoping to not need to try it in the near future world for that matter… Nonetheless, dealing with ALS means that I might have to consider it at some point.
This free software offers you an alternative to using your mouse through the use of the WebCam.
By moving your head around, tipping it left or right or up and down, the camera mouse translates these movements into mouse action. To send a mouseclick this is done with a supporting program (also available through this website for free) called dwell click.
All that's required to get this working is your PC, a web cam and the free camera mouse software.
Now, I do realize that this software will not work for everybody with ALS as all our symptoms progression's are somewhat different. However if your situation is similar to mine and you seem to be losing the use of your hands first but still retain control of your head and neck (no bulbar symptoms really) software like this may just help you stay active for that much longer.
And like I said, it's free. So what you have to lose?
It turns out that finding a good walking stick or cane is not easy as you might think.
When I first started using a cane I was having only slight balance issues, but my psychologists suggested that I start using one more as a social signal to people around me rather than an actual mobility aid as at the time I was just starting to have enough difficulty to make me feel uncomfortable. But not enough for the people around me to realize there was in fact something wrong and I wasn't just drunk or stoned.
So on his advice I went out and bought an MS Society cane that I thought would be good for me. You know the type, you see a lot of elderly people using base. Cast aluminum tube, formed handle and a wide foot. This is probably the most common type of cane you will find houses sold in just about every drugstore. Consequently these are also contains you will most likely be suggested to start using…
I started with the one shown in the image. It only cost about $25, and for the price it worked okay. I did find it a bit heavy and awkward to control. This is also largely to do with the fact I was starting to have quite a bit of atrophy in my arms and hands.
So, not being terribly happy with this cane and actually starting to need it more at this point. I started to look around for alternatives. What I really needed was something that was light, well-balanced and within T-shaped handle.
I found very little that would work for me in handicap retail stores or that was actually being offered to me through my rehabilitation facility. So I decided to start looking at trekking poles. Thus when I stumbled across the wanderfreund-speed-lock by LEKI. I only found this particular model for sale in one retail store here in Montréal. It seems to be a less popular version and consequently not many people have stock. However for my needs this cane was perfect.
This cane was very light and easy for me to manipulate. The best thing about it places the balance point was much higher making it easier for me to keep away from my foot. The other MS canes tended to be heavier out at the end which would cause me to occasionally kick them as I walked. Needless to say this is kind of dangerous.
The wanderfreund-speed-lock length is very easily adjustable as wherewith the MS Cains I would have to have someone do it for me. Not to mention it is designed to be collapsible, which is really handy for when you're out saith the movie or show and you don't want it sticking out into the aisle. You can collapse it down to a length of about 65 cm.
Not shown in the image is actually was under the rubber foot, which is a carbide tipped. The rubber foot is actually just a You can place over it to use or generally. Living in a city where the weather can be pretty cold and crappy for part of the year, this is really handy. If things are slippery hiking use the carbide tip to guarantee that I will bite into whatever surface I stick it on to.
so that's where my cane went…
I really liked this cane and wish I could continue to use it. Unfortunately my hands have degraded to the point right can't really hold it anymore without some sort of help. For a long time I was using a wrist wrap to attach myself to the cane, however the attending short in my right hand has made this no longer a viable option as it is a bit painful to do so.
For the cost of about $70, I got a lot of miles on this cane. The one thing to be concerned of is that the foot is substantially smaller than the MS cane and if you're not careful can easily fit through things like the gap at the elevator door or a sewer grate.
As I felt I still needed the use of a cane, hyped this to my rehabilitation people. Explain to them the problems with the grip and that I would need something to help me grasp the cane. Unfortunately the solution was less than satisfactory. They came back to me with another team that was very much like those from the MS Society mentioned above, only with a custom grip to which they riveted some neoprene and some Velcro so I can wrap it to my hand.
This only sort of worked as now I'm considerably weaker than I was and this cane although a little more comfortable hold was far too heavy. Despite requests to remove the handle from this new came and adding it to my LEKI one, they would not.
Needless to say, this would not do for me. So it's a little bit of help from my social worker, we chopped the ends off of my LEKI and the new right hand cane and using a little bit of epoxy we glued the right-hand grip on to the LEKI. For a time this worked out quite well, with the continued atrophy even this modification has started to become less useful. But nonetheless I managed to get a few more miles out of it…
The next option I considered was the Side Stix crutches. These are more ergonomically designed for obtains are made of carbon fiber and are extremely light. they even have a shock absorbing spring the shaft. They are quite expensive, costing between $600 and $800 for a pair. But they will sell them as individuals for half the price.
When I was back in Vancouver, I tried one out for a bit and they are far superior to the regular forearm canes. Sadly, given the atrophy in my hand I still have the same grip problems and would require myself to be attached to the cane, both at the hand and forearm. For forearm canes this is quite dangerous, should I happen to fall I could probably severely hurt myself and possibly even break my forearm. This is quite a disappointment to me as I did find these canes to be very good. Even with my limited dexterity I was able to maintain far more control over the cane than any of the others I had tried to date.
Sadly the side stix canes did not work for me, but if you have the budget they could well work for you. Definitely check them out…
