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.

Wednesday, 11 September 2013

Oh Just Kilt Me Already!

That's right, I've decided to start wearing a kilt around the house. But before we get into talking about that, we need to make one thing clear first…

Okay, now that we've established the rules. Kilts are not dresses or skirts and exceptionally manly… Why am I wearing one? (As matter of fact I'm wearing it right now)

Kilts, in the traditional sense are supposed to be worn "commando", and although they are quite comfortable worn in this manner and provide good "air conditioning" its not exactly why I'm wearing one. Due to the illness, and the restricted movements of my arms I started finding it very difficult to go to the washroom on my own. Getting my pants and underwear off was not that big deal (it has become more challenging), but afterwards it's become nearly impossible to put them back on. For months, I would have to shuffle into my room in various states of disrobe, lie down on my bed and perform all sorts of gymnastics to get my pants & underwear back up. Then of course came the chore of doing them back up.

trying it on, fresh out-of-the-box
Of course, if you see my previous post about my status you will no doubt have noticed that I rate the function of my hands and arms in around 15% right now. Because of this, and the fact that I spend large portions of the day on my own, I needed to find a solution that provided a better "access" to prevent "accidents". So far the kilts solution is working out reasonably well. Much easier than dealing with pants and underwear. But the key to this is of course wearing them "commando". It's also for this reason, I wear them around the house only, kind of like pajamas. They are not intended to leave the house.

Sorry folks, a little bit more in the graphic details in this paragraph… Going to the washroom now is much easier. Especially to go pee. Because of the dexterity problems I do have to sit to urinate, this eliminates "accuracy problems". The kilt is very easy to keep out of the way when sitting. However, when I have to "drop the kids off at the pool" its a bit more challenging to make sure the kilt is out of the way. But with a little bit of effort, it is much more manageable then dealing with pants and underwear afterwards. So far I've not had any "misses".

So where do I get mine? I'm wearing a deluxe utility kilt purchased from http://www.utkilts.com/. Not the traditional wool type. A traditional wool kilts would be far too heavy and unmanageable (I used to have one for Halloween costume). The utility kilt is great and has some really cool cargo pockets on either side. There are surprisingly accessible and very easy for me to keep my cell phone in. They come in a variety of designs and colors and are fairly reasonably priced.

Before finding this website, I actually ordered mine from eBay from this company. Consequently I ended up paying a little more than I otherwise would have. If you order directly from http://www.utkilts.com/ it works out to be a little less expensive, saving you about $15. The kilts are shipped by the pound, with a minimum shipping cost of about $30. But adding more than one kills only adds about six dollars to the shipping cost, so if you are serious about wearing a kilt ordering more than one might be in your interest. As a matter of fact as soon as their stock is back in, I am going to be ordering two more deluxe utility kilts.

You can also check out http://www.utilikilts.com/ for more options. These people look to provide very good quality and I believe have been in business longer. They are however significantly more expensive. Don't be confused by the second, they're not the same company as http://www.utkilts.com/ 

  • very comfortable
  • price for the kilts is reasonable. Ranging from $50-$80 depending on the design you choose
  • makes "access" for nature's call much easier for me

  • you will no doubt have to deal with the jokes of it being a skirt. If this is a real problem I recommend the following kilted T-shirt as well
  • can obviously be a little cold in the winter
  • unfortunately shipping costs are little high here in Canada
  • the fabric is a little bit stiff, even after the first wash. Making him a little bit hard to sit down comfortably and not on a wad of folded fabric
  • pay extra attention to the sizing instructions! This is critical. They are not in size like regular pants
very happy with the product, find them reasonably priced and work well as adapted clothing. I am buying more :-)

Wednesday, 4 September 2013

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!