2014 In Comical Review

I thought the best way to kick off my first post of 2015 would be to review some of the more humorous/ comical/ facepalm conversations and moments brought to you by ALS. Some of these I posted on my twitter feed or Facebook, but should be good for another laugh ;-)

ok, I know you *can* but
Nooooooo

On Using an Electric Razor

my helper, holding the electric razor in hand looks at me pauses and then asks "where do you keep the shaving foam?"

Somebody Tripped Me

back in August, when I fell and broke my right arm. One of my regular helpers arrives for the scheduled appointment. This is her first time seeing me since, of course she is surprised to see me in a cast and immediately asks "what happened!?"

I tell her the story about how my right leg let go for no apparent reason and I fell on my wrist. Breaking my arm.

She replies, "well, you sure were lucky that Jesus was there!"

Me: "yeah, I know, it sure felt like somebody tripped me."

With a confused look on her face, pauses, then asks, "what do you mean?"

"Well, I sure didn't fall by myself. Somebody had to trip me."

"… I don't understand."

Me: "… Jesus tripped me…"

Don't get me wrong, I'm all for allowing people their individual beliefs. Just don't use it as a way to tell me how "lucky I am".

Proof of Life

my insurance company actually required me to get my Dr. To fill out a form, which is essentially confirmed that I was still alive and could continue coverage. Essentially, I had to provide proof of life for myself.

The Spacebar Lady

I could not go without me telling this one. Back in May, befor I e we moved in and broke my arm. I had modified my desktop computer so I could boot it by pressing the space bar. However, if I'm already sitting in my computer chair I cannot reach it on account of disability. On this day I asked for help…

Me: would you please press the space bar on keyboard?

Helper: what is the space bar?

Me: the large rectangular key on the bottom of the keyboard, press it

helper: I'm sorry, I don't know what that is

me: the button you press the put a space between words!

Helper: I don't understand.

Speaking in French this time, we pretty much repeat the above conversation. Finally, I get it frustrated and ask: Didn't you tell me you recently finished a computer course recently for something like Microsoft office?

Helper says proudly: yes I did, I got 94%

Me: then how on earth do you not know what a space bar is?

I think to myself, 94% for what. Attendance?

Wheelchair Versus the Stairs

the wife and I had to attend a meeting to sign some legal papers. The location was changed to accommodate my wheelchair needs. When we arrived in the front lobby, me and wheels 2.0. We are greeted at the front door by one of the assistants saying something like "so glad you can make it! We are happy. You could make it. Everyone is waiting for you upstairs."

Me: "great, where is the elevator?"

Gesturing to the stairs, the assistant says, "we don't have one, everyone is waiting for you upstairs."

Looking down at wheels 2.0 I replied "I'm going to give you a minute to realize the likely what the problem is…"

"…"

It's funny how some people don't immediately grab the obvious.

The Coffee Incident.

I have Nespresso coffee machine. It is unbelievably easy to use. Granted, the power button can be considered to be a bit "camouflaged". but other then that, extreemly logical and easy to us. so one day  after almost 15 min. of trying to explain to my helper how to make a cup of coffee… This happened

Accessible Plates

One of the projects I've been working on for some time with my occupational therapist was to find some decent plates that worked well for me. This has, surprisingly been far more difficult than one would've expected.

Stay still dammit! I'm trying to eat!

Sure, there is an entire world of disability/accessible plates and bowls. But finding good ones that I liked was not easy. Most of what's out there is either small, made of plastic or not that beneficial and really makes me feel disabled. I still have a very healthy appetite and eat a large portion, so small plates don't work for me. Plastic plates are light and the slide all over the place and I already have enough problems trying to get food in my face. I don't need to chase it down anymore than I already do.

Probably about a year ago when we first started looking at better plates and bowls for me, my occupational therapist gave me a couple samples to try. One that particularly liked was steelite plate. So after using this plate for a few months and having increasing difficulties with regular plates, I decided that I would like to get some more of these plates rather than just one. I asked my occupational therapist for more.She told me that the only had one on hand, and couldn't remember where it came from. Nonetheless I said these are the ones I wanted.

Over the course of several months I was repeatedly told that she was unable to find them and that they were likely discontinued. So one day about two months ago she when asked about the progress on the plates, she explains this again and she says that she will keep looking on her side but that I could also go try a few stores but that she would need a moment to call one of her colleagues to get the names of the stores.

"No problem I say" after all I expect the names of specialty.

She makes a phone call to her coworker speech from in order to and comes back with a list of stores. I wait patiently while she's on the phone, she comes back with:  Bowering, Sears, the Bay, the linen chest, Stokes and of course… Canadian tire. Yes, you read that right. A list of the most common places to buy plates in Canada, possibly even North America.

While I stare at her for a moment completely dumbfounded she grabs a piece of paper and proceeds to write the stores down for me. Okay, now she's insulting my intelligence. I honestly felt like I'd walked into a specialty bookstore asked for the first edition copy of Don Quixote and the reply is "have you tried the public library?" I come to see these experts in the hopes that they have access to resources that I do not have in order to expedite the process in acquiring the adaptations and devices that they need.

Not to mention that having ALS means I don't have the mobility, energy nor time to race all over town to track this down myself. It was my understanding that's why we have an occupational therapist as rehabilitation facility.

AAAAAANYWAY… Enough venting about that.

This frustration sent me on an intranet quest. Through the appropriate use of Google I was able to quickly find a few suppliers. The first ones were unfortunately all in the UK and Europe. They were willing to ship to me in order, but because of the distances involved the order would've had to be a little larger than I had hoped and the shipping costs were, well. Expensive. Here's a couple of the links I found:

• http://www.completecareshop.co.uk/disability-elderly-aid/3208/steelite_plate_-_medium.html
• http://www.nrs-uk.co.uk/steelite-plate.html

Through a few more manipulations of Google, I contacted the North American steelite supplier, a gentleman named Gary who was extremely kind and helpful. They went on to explain that these plates are not available through the distributor as individual units. However they can be ordered by the case. It turns out a case is not terribly unreasonable, especially if you can share the order with someone. The plates come in two sizes. 8 1/2 inch and 10 a quarter inch.

Through discussions with the distributor, here's what I was able to acquire:

What I particularly like about these plates is that they are ceramic like any other plate. Because of this I don't feel like I'm using specialty plates that often. They're heavy and durable. From what I understand they were actually intended for old age homes. They have a nice gently curved been raised age that's not too high and works very well for helping push the food back onto your fork or spoon.

At first, I wasn't sure I'd find a whole bunch of benefit to having plates of different sizes. But I actually do. Some meals are much easier to manage and the smaller plate. For example when eating pasta, I'm less likely to drag my knock on us through my food to push up against the far side of the plate.

Also, one of the great things about having plates of different sizes and colors like this is a help immensely with our coping strategy for a three-year-old son. From time to time we take one of the smaller plates for him two years so he can now have a big boy plate "just like dad" we are hoping to take some of the fear out of the situation with this. He is old enough that he starting to ask about questions.

The coffee mug is a great idea as well, having handles on both sides. It weighs about the same as any other coffee cup, but unfortunately due to the specifics of how my hands are starting to flatten out and deform this cup is proving not be as beneficial as I had hoped. I will say however it is easier for me to transfer coffee from the kitchen to where I sit. Unfortunately it's not really much easier to drink from for me. Mind you that's about the same for any cup these days, I'm having to use a straw a lot.

Yup! Great product.

On the whole, I'm very pleased with these plates and the cup. They're the best thing I found for me to date. There are little bit hard to come by, but worth the effort. You can contact the gentleman who helped me here Gary gbennington@steelite-canada.com or you can go through their corporate site which is where I started.

You can view the whole line of the Rio steelite products here in their brochure.

A Little More Humor…

Imperial versus Metric…

Every two weeks I get some help to come to the house to help to prepare some meals in this usually works out okay. But once in a while there are some things that just don't seem to be understood… While making a particularly good ratatouille, here's a sample of the conversation I had the other day:

Me: "we need to slice all the vegetables to be about 3 mm thick."

Helper: places the knife on the vegetable and shows me where she thinks to cut, which is about a centimeter. Asking "like this?"

Me: "no, recipe calls for about 3 mm that's about a centimeter"

Helper: "I don't know what a centimeters…"

Me: thinking to myself, okay she must know the Imperial system. "Recipe actually specifies 1/16 of an inch" (okay, I know that's about half the size of 3 mm…)

Helper: "oh, like this then?" She places the knife on the vegetable ready to cut about a quarter of an inch thick.

Me: "no, the recipe says 1/16 of an inch"

Helper: she repositions the knife again, this time to about half an inch. "How about this?"

Me:… Okay, she apparently doesn't know the Imperial system either…
/FacePalm

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Battling with the Car Seat…

Every weekday, I have a helper come by the house to assist me in getting my son from daycare. I can still drive there and back, but I have difficulty getting him ready and I cannot manage the car seat. I don't know what it is, but there seems to be an ongoing battle with my child's car seat when we pick him up from daycare. Helpers often just don't seem to understand how it works. 

The following is an actual conversation that happened, you can pass your own judgment…

Me: I sit down in the driver seat waiting for my helper to attach my son. I mistakenly assume he knows what he's doing.

Helper: fumbling with the straps for a few minutes he actually says to me "well, I can't figure this out. I'll just hold him in the car seat."

Me: completely dumbfounded I replied "the hell you will. We may only be going a few blocks away, but you will do it up properly"

More Funny Business

 It's been sometime since I've been able to use a regular toothbrush, so for several months now I've been using an electric toothbrush. At this point in time it started to become a little more difficult for me to turn the toothbrush on, I lost enough dexterity that flipping the switch was becoming a challenge.

So, I took this problem to a couple of technicians for advice. We discussed several options for how to modify the toothbrush switch to make it easier for me to turn on and off.

At one point, I'm discussing this with the technician who would make the modification and we were going in circles about how to add a switch to battery box. Meanwhile the other technician has my toothbrush on the table and is playing with a metal block to flip the switch. He then says to me: "what if we were to mount a block like this one on your counter. This makes it very easy to catch the switch to turn on the toothbrush."

I give a moment's pause before replying with: "okay, if we do that… What happens to the toothpaste?"

"… Oh yeah… Right."

We then settled on the simple solution of gluing a rubber bumper to the switch…

The Funny Business of ALS

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…

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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"

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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…"
• Me: I leave shaking my head before she sees me do the double face Palm