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, 31 May 2012

Dealing with Zippers

One of the first things that really started to get in my way after my fine dexterity started to go was dealing with zippers. Grabbing the end of the zipper just became increasingly difficult and now it's pretty much impossible.

Around about this time I also started attending a rehabilitation facility here in Montréal or had access to ergo therapist. I explained this problem to them in the solution they came back to me was... keyrings.

Now the idea of having a shiny silver keyring hanging from my zipper did not appeal to me. Sure it would work and I did find it rather humorous to have something that resembled the pin on a grenade hanging from my jeans, I felt it would look odd and attract attention to me and my disability. Now of course there's all sorts of the zipper pull options out there, but to be honest I actually had a hard time finding them in my local sporting goods stores. And yes I could have also had some made at the local shoe cobblers as well.

What's interesting here is not so much the zipper tab itself, as where I got them… And the best thing is I got about 30 of them for free! Enough for me to address every pair of pants and shorts that I own… And then some…

The first thing I did was to walk into the local Mountain equipment co-op store  showed them the ones I had on my bag, explain my situation and asked if that were possible to acquire some. The customer service person was more than happy to do so and gave me what was on hand which is only three or four of them. Once again for free.

Obviously, this wasn't quite enough to address my needs. So I got on the phone and called Mountain equipment co-op's online customer service directly. I once again explain the situation and what I was looking for to the agent and I would be more than happy to purchase number of them. He paused for a second and said "don't worry about it, I will send out a bunch classified as a repair".

I've always liked shopping at Mountain equipment co-op anyway, then this level of generosity and customer service I thought was just great. Sometimes all you have to do is ask ;-)

What I particularly like about the zipper pulls is there discrete, durable and little plastic knob at the end makes it reasonably easy to grab. There are a couple different types, the ones they sent me have a little small plastic knob. But the better ones I find is you can actually get a form longer plastic knob to grab onto. Those are the best…

Also if you prefer to purchase some or are having a hard time finding some, I find you can order  zipper pulls online at CPGear for about $2C a pair. I find this to be a little bit expensive, so maybe it would be worth shopping around at various online military surplus/tactical stores.

Cost: free!
Pro: much more discreet than a key ring, easy to grab… did I mention I got them for free?
Con: there are various types, and the wrong ones might not address your dexterity needs.

Monday, 28 May 2012


Me, like a lot of people I love a good cup of coffee. Particularly first thing in the morning. But with my disability affecting my hands to such a degree it was starting to become very difficult to make a cuppa coffee on my own. Using a regular drip machine, I would have coffee grounds all over the countertop  and then there was always the adventure of pouring the coffee into the cup… This was exponentially worse when I tried to make espresso.

Nespresso Pixie
So several months ago I discovered an Nespresso coffee machines. They make a very good espresso and the coffee is all preloaded into little capsules making it extremely easy to pour. Drop the puck in, close the chamber, push the button, wait a few seconds and enjoy.

The machine shown here is exactly the one I purchased. It's the pixie and it sells for about C$250, making it a bit expensive for a cup of coffee but about on par with other espresso machines. What is particularly great about this machine is the handle. In some large silver ring on the top left of the machine which is used to close the machine, and puncture the capsule. If you are like me and have a significant impairment of your hands this lever is extremely easy to grasp and close.

There are a number of different machines to choose from, with of course varying price and functionality. But for me the accessibility  provided by this machine via the handle is what really appealed to me.

Of course there are also a number of other coffee brewing machines which operate on capsules or packets, some of which are cheaper. However for the price is the only one that I found which is an actual espresso machine. Meaning the coffee is actually brewed at 19 bars of pressure and because of this it makes a very nice creama (coffee foam).

There is a wide choice of capsules to choose from, 16 total ranging from mild through two very strong coffee. The price of which is between $.63 and $.69 each. This might seem a little bit expensive, but price comparison to the other non-espresso pods at the local supermarket shows them to be only marginally more expensive for good quality coffee. One must also keep in mind that these are expressing portions, meaning a long poor will only give you 125 mL, or about half a regular cup. That being said, with the richness of the espresso and the shakiness of my hands, I find a half a cup portion to be about right.

Although Nespresso recommends many of the capsules only be used for short shots of coffee, I find using a long poor on any of the stronger ones still gives a very pleasing and rich beverage. However easily reprogram the length of the poor should you choose to do so.

another feature that is interesting to this model, is that the little tray that you see the cup of coffee sitting on the image folds up allowing you to place a regular sized coffee cup instead. I find that this way I have a little bit of a safety margin with a regular cup, so I'm less likely to spell it in the cup itself is much easier to hold on to.

So if you are coffee lover like me and have some kind of issue affecting dexterity. This machine could very much be an answer for you.

Cost: C$250
Pro: very accessible espresso machine, with no mess and it's very easy to operate.
Con: only accepts Nespresso capsules

Wednesday, 23 May 2012

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.

Sunday, 20 May 2012


Over the last several years I've been dealing with various stages of disability thanks to ALS.

On this journey I have encountered a great number of situations,devices and services which were all intended to help me, but with varying degrees of success. Consequently I've done a lot of exploration and problem solving on my own. by doing so I discovered a number of solutions to which my counselor at the Montréal Neuro tells me is "outside the box". Thus, at her behest I created this blog.

My goal is to share solutions and review various products/tools/devices that I have found particularly helpful.

You can read more about my intentions about this blog in the about section