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.

Thursday, 27 September 2012

Stupid Solutions to Stupid Problems

As my ALS progresses I'm losing function and strengthen my hands causing doors to start to become part of the problem, and this is been ongoing for around about a year. The regular round doorknobs I just don't have the strength to really hold onto anymore and turn. So a number of the doors in the house I replaced with a standard lever handle. And for the most part this worked out just fine, each door costing me about C$25. Not too much and I kind of prefer the look of the new doorknobs anyway. However, I do have a little 2 1/2-year-old running around the house, and if the lever makes the door it easier for me, then it sure makes it easier for him as well.

There's a few rooms we don't really want him to have access to… Like the stairway to the basement for example. So up until recently he wasn't able to deal with the standard doorknobs but of course I still wanted access, and of course if I put any child safety doorknob thing on there's no possible way I could open the door. What I needed was a way to apply extra grip to the door for my weakening hands, and it occurred to me the old trick for opening jars of spaghetti sauce would work just as well for opening a door knob… Add a rubber band… Duh!

This is of course a stupidly simple solution, but sometimes these stupid solutions stare us in the face and we just don't realize them and this can be just as true for the experts we invite to help. I even had a conversation with one of them about this issue and they handed me a strip of no slip plastic that I would have to carry around and place on the door, and then turned the doorknob.

The rubber band solution is so much easier.

Anyway, for the moment this is working quite well and the rubber band very rarely needs to be repositioned and it's only been in the last month or so my son is been able to actually open the door at this point is pretty good at the stairs I'm not terribly worried…

Saturday, 22 September 2012

Environmental Controls, The First Attempt

As my hands lose dexterity, one of the things I've been thinking about for a long time is to have various options to control my environment.I've been looking into all sorts of remote control options but the first one I decided to try was a little bit of an impulse buy called the Beacon by Griffin technologies. It's a device that allows you to turn your iPhone (there's also an android version) or iPad into a very powerful remote control for your home entertainment.

It's an IR repeater that you controlled via Bluetooth from your iPhone or iPad. It is very easy to control and set up and have managed to get it working for my sharp TV, my PVR and my Xbox 360 with nearly no difficulties. And by signing in all of my settings are synced across my IOS devices… Which is really cool as I have an iPhone and a iPad.

As I mentioned it was a bit of an impulse buy one day wandering to the Apple Store. The also had another device that turns the iPhone into an IR controller called the VOOMOTE. This was interesting but a plugged into the bottom of the iPhone and seemed rather small and fidgety. So for this reason I opted to try the Beacon instead. I felt that I would spend too much time looking for the remote and of course with failing dexterity, trying to plug it in would no doubt frustrate me and this is exactly the problem I was trying to solve. I'm finding the regular remote control is becoming rather fidgety and difficult to hold onto and the buttons are not that easy to press most of the time. My iPhone however is still nice and easy to hold on to and is usually never too far from me. Being a touch sensitive screen requires no force to press down and even though my hands right now are starting to curl up, I could still hold a stylus.

One feature I really like about the Beacon is that once you installed the free DIJITE app which you need to operate it, you specify your television service provider and your iPhone will actually update with the TV Guide for what's on. This is a great way to browse without actually flipping the channels.

For me the biggest downside about the Beacon is the fact that is battery powered only, requiring four AA's. On the surface this is really sound like that much of the big deal until you realize that as long as your Bluetooth is on on the iPhone the Beacon will try and stay connected. It will only shut itself off after his been out of contact with your Bluetooth device for one hour. What this means is that even if you are not actively using it, there is a "keep alive" heartbeat going on between the Beacon and your iPhone gradually diminishing the battery. Not to mention if you happen to forget to shut off your Bluetooth connection after you shut off your TV, or have them for bait you go to bed.

Consequently the beacon in my experience tends to eat batteries and because of this I tend not to use it as much as I would otherwise like to. With my hands the way they are, changing batteries by myself is a pain in the butt. It's sad that this is the unfortunate reality because I really do like the device. It's very easy to set up and use and can be used across a wide variety of IR devices. the Beacon can even learn IR signals so it can operate devices that wasn't originally intended for, like your air conditioner for example.

Cost: C$70

  • relatively inexpensive way to use your smart phone or tablet to control your devices
  • very easy to set up and use
  • I love having the TV Guide on my iPhone or iPad
  • the Beacon eats batteries
Recommendation: although the Beacon works extremely well and a very much like it, however I cannot recommend it because of the ridiculous battery consumption and what I consider to be a rather large design flaw with the keep alive between the iPhone and the beacon.

Tuesday, 4 September 2012

Loose Change and Sanity

Occasionally getting out of the house to maintain contact with the rest of the world is often a good thing. Even if it is just to be around other people. One of my preferred destinations is to go to Starbucks just to grab a cup of coffee.

Now as you may have noticed from previous posts, I like my coffee.
I do have to admit that I have a certain bias to Starbucks. My first serious girlfriend worked as a barista their, so let's just say I  have a certain Pavlovian conditioning to the smell and the green aprons ;-)

One of the problems I tend to have is that for small transactions, you have a tendency to paying cash. It just doesn't seem to make a whole lot of sense to bust out the credit card for $1.50. This then of course means that you are getting a handful of change back, and with the state of my hands this is very difficult to manage. I usually end up dropping it and if nothing else trying to figure out what to do with it later on… And I can pretty much forget about trying to use it to pay for my coffee the next time around…

Because of this, I decided to start using the Starbucks prepaid card thinking that fumbling with the card from my wallet would be much easier to manage than a whole bunch of coins. For the most part this proved to be pretty much the case.

Shortly after I discovered the Starbucks iPhone app which is really pretty cool. Not only does it have a whole bunch of extra features for things like finding the nearest Starbucks, but you can actually link to your prepaid card/account and then use your phone to pay for your purchase.

For me this is great, it eliminates with all the dexterity issues associated with dealing with cash and coins. Not to mention to a lesser degree, the prepaid card itself. On top of that, my phone is usually in the side pouch of my grab it pack and being much larger it is much easier for me to manipulate. The only pain in the but I would give it is a from time to time I have to re-login and enter my password… Which is now become a bit fidgety to do.

There are a few things about this that I find a particularly cool:

  1. the iPhone app will show you the running balance on your card.
  2. There are several options to reload dollars onto your card either via the Internet or via the app itself.
  3. Starbucks offers a pretty good reward program starting with free refills and syrup, and ending with some free coffee :-)
    of course you can see how many rewards points it accumulated via the app as well.
Now some of you might be thinking "well duh! I've been using prepaid cards for ages". But sometimes we just don't see the obvious solutions that are staring us right in the face, and dealing with ALS a friendly little nudge can be really helpful… More stories on that one later ;-)