Useful things for the gimp in your life

It's been a while since I put actual useful information on my blog. I know from looking at my analytics that quite a few people arrive here after searching for info on ALS or Monomelic amyotrophy. so, I decided to throw together a post comprised of gadgets and tips I use on a daily basis. Starting off with;

Mac dictate

this is the dictation software I use to write e-mails and blog posts. It is very accurate and very useful. Occasionally it does interesting things with spacing and capitalization. The only draw back is that I can't listen to music while I'm dictating. I've tried it before, and I end up with three quarters of a coherent e-mail with James Brown lyrics interspersed.

Uuhh! Get on up! More on it here.

Bendy Straws

Bendy straws are awesome. You already know this. I have a stash at home and at work, should a beverage situation arise. There are more than a dozen Pro-bendy straw groups on Facebook. The largest one has over 7000 fans. People are weird.

iPhone
Apple likes to say that all of their products will somehow change the world. In the case of the iPhone, that's actually true. I could not make phone calls with out it. A standard cordless telephone is too heavy for me to hold to my ear. My last cell phone had buttons that were too difficult for my weak fingers to press. The touch-sensitive iPhone, combined with this headset, makes talking on the phone possible for someone as weak as me.

zipper pull

My dad invented this handy little tool. I have them all over the house now. It's simply a 3 to 4 inch piece of quarter or 3/8 inch dowel with a little screw-in metal hook in the end. It gives me something large enough to hold onto so I can zip a jacket or pants or whatever.

rocker knife

I have talked about the rocker knife many times before, but it bears repeating. Get yourself a rocker knife.

That is all.

spork

I found this utensil in the camping cookware section of REI. It's made out of titanium, so it's ridiculously light. however, the best thing about it is the flat handle. Most of the silverware designed for disabled people has big fat handles. A fat handle would be great if my thumb worked. since it doesn't, a wide flat handle is easier for me to grasp.

I think a lot of the utensils and other items designed for disabled people would be a lot more useful if the designers would talk to a disabled person every now and then. it's not like we're hard to find. Just hang out near a handicapped parking space long enough, and a disabled product tester will find you.

cup

This thing is what I use to drink 90% of my beverages. its a double wall insulated pint glass with a (mostly) leakproof lid. it has a big fat, heavy duty reusable straw as well.

Camelbak better bottle
it's a water bottle with a built-in straw, and a loop on the lid that makes carrying and opening it a breeze.

miscellaneous
here is a post I did earlier about kitchen gadgets that might be useful to other gimpy gourmets.

How about a bike without hand brakes?

nemesis

Over the last 2 years & change I've adapted pretty well to life with one working hand. I'm even getting pretty good at making it through my day with 50% function in my good thumb.

But every now & then life serves up a curve ball. Hell, thy name is 'buffet'. I went through a wedding sample tasting buffet line this week and it sucked out loud.

Getting food at a buffet (like one you might find at a wedding or corporate event) used to be easy. Hold plate left handed, serve food right handed. Sometimes I'd switch it up for fun. I think ambidexterity is the product of being raised by a left handed dad & right handed mom.

Nowadays (is nowadays even a word? whatever.) I can barely hold a plate left handed, and it shakes all over the place. Not a stable platform for piling one's dinner. I ultimately place my plate on the table, which garners some strange looks from other buffet-goers. I then transfer food from the steam tray down to my plate.

This is where things get tricky. Remember that 50% function in my good thumb? It now has to make the long trek from tray to plate, tongs in hand, without dropping any food. This is way harder than it sounds. I get nervous that I'm about to send au gratin potatoes or whatever splattering across the floor - which makes me shaky & panicky - which weakens my grip and makes me more likely to drop something. It's a vicious circle, man.

Getting back to my table can bring another challenge. If I was dumb enough to grab something tough, roast beef for example, I'll need help cutting it. Being 30 years old and having my wife or mom cut my food is just plain weird. No one wants to see that, especially me.

Public service announcement time: If you have a friend with monomelic amyotrophy, do not take them to a function with a buffet line. It's like serving yourself a garden salad of terror and herb-roasted fear with a side of sautéed sadness on a plate of despair. OK, maybe it's not that bad.

Substitute poached trepidation and a dinner roll for the salad.

it's about time i put some original art on this mo-fo

Many moons ago, when I launched my website, I suggested that anyone else with Monomelic Amyotrophy contact me so we could start a metal band called "Bring Out the Gimp". Several dudes with MMA have contacted me & referenced my theoretical band in their email, which is awesome. Incidentally, if we ever do start an MMA band called Bring Out the Gimp, do not come see us. Seriously, you will not survive our live show. We will rock that hard. There will be a five kilometer safe zone around us. We will melt the devil's face. Satan sold his soul to our band to keep us from turning our amps up past "8". I might ask my brother-in-law join us on stage. He's the 6' 6" singer of Mantys and sounds like this.

Seriously, don't come to our show.

Anyhoo, I haven't designed suitably 'core album cover art for our band yet. Although, I figured once our gimpy band starts rocking, other gimpy bands are sure to follow. As such, I spent my evening (my Friday evening, because that's how much I love other MMA-havers out there) designing logos for pro-neuron disease bands who want to rock. Rip these off as needed. Contact me if you need a high-res version for your MMA band.

Amy O'Trophy - traditional Irish folk music

Atrophy - probably some hipsters re-hashing the Strokes

Amy-O - bad ass female rapper. She'll cut a bitch.

Neuron Disease - Heavy duty Russian punk band. They're connected. I'm just sayin'.

the monomelics - Here's a logo for a sad-sack emo band. Mopey bastards.

with one hand...

You know the expression, "I can do that with one hand behind my back"? That has lost all meaning for me. Pretty much everything I do, I could do with one hand behind my back. That's the beauty in having a useless left hand.

Now that presents a dilemma; do I stop using that expression, or do I run it in to the ground?

"Build a website in a day? I could do that with one hand tied behind my back".

"Cook dinner for a dozen people? I could do that with one hand tied behind my back"

"Blog about a rare motor neuron disease? I could do that with one hand tied behind my back."

Yeah, I'll stop using that expression. I'm already sick of it.

Googling MMA

There's a problem with Monomelic Amyotrophy's abbreviation, MMA. It just dawned on me the other day that, in the parlance of our time, MMA is the standard abbreviation for Mixed Martial Arts fighting. That's the thing where dudes in a chain-link octagon beat the hell out of each other for no apparent reason. From what I can tell, there aren't any rules. Good family fun.

This abbreviation clash sucks, because if you Google "MMA" all you get is dudes doling out beatings. Monomelic Amyotrophy was first identified in the 1960s. Mixed Martial Arts is relatively new. Seems fair that the disease should keep the MMA abbreviation & the blood sport should get a new one.

Here are some suggestions for re-naming Mixed Martial Arts.

HEAT - Homo Erotic Action Throwdown
SLAM - Super Lame Arrogant Machismo
RUDE - Really Unnecessary Dangerous Exercise
PUNCH - Punch Up Nuts, Chin, Head

I could go on...

bring the noise

I just ordered a fancy electronic drum kit. RAWK! I can't wait for that sucker to arrive. I'm going to keep my arms from getting too weak & lay down some funky ass beats at the same time. I may also lay down some dope beats & heavy beats. Possibly even a break beat will make a guest appearance once I figure out 5/4 time.

I used to play guitar & harmonica at the same time, so I'll have to learn simultaneous harmonica & drums. I'm sure it's possible.

In other news, I've heard from 2 more dudes with Monomelic Amyotrophy this week (what's up Ian & Tony!) Which brings the total number of MMA cases I've heard of to eight. I even have a follower of this blog now, so I feel motivated to be funny... or at least spell check this thing.

I created a Facebook group called "People with Monomelic Amyotrophy (MMA)" which thus far only has two members. If you have MMA, quit reading this blog and get your gimpy ass on Facebook. We'll upload photos & share stories and figure out what our similarities are. Lord knows the medical & pharmaceutical industries aren't going to help us out. There just isn't enough money to be made from 8 guys who have trouble tying shoes & opening jars.

this motor neuron disease is trippy

You know what's really nutty about monomelic amyotrophy? You can see it.

Granted, you can't see it in the literal, microscopic, holy-crap-there-goes-another-neuron sense, but you still get to watch it in action.

Hypothetically... say you have cancer. You know it's in an internal organ. You know it hurts. It's beneath your skin (assuming it's not skin cancer) and you don't have to look at it.

As I sit here, my tricep is going crazy. It's twitching around like you wouldn't believe. It's twitching because the motor neuron that tells that muscle either "FIRE!" or "chill, baby" is dying. As a result, my tricep gets pieces of info that cause it to spasm uncontrollably.

Remember the movie Crimson Tide where the nuclear sub gets part of a transmission about firing it's ICBMs? Gene Hackman & Denzel Washington go nuts about whether or not to launch the nukes? They totally freak out & try to arrest each other as they inch closer to all out armageddon. One of them wants to launch, one wants to wait for confirmation. Well, that's what's goin' down in my tricep.

Except my tricep isn't as devastatingly handsome as Denzel, as ferocious of an actor as Hackman, and - to my knowledge - not as radioactive as a nuclear sub.

Anyway - here's to hoping (raises a beverage of some sort) you never have to watch a disease lay waste to an appendage. I don't know for sure, but I have a feeling that out-of-sight truly is out-of-mind when it comes to an ailment whomping on your person.

et tu, blue jeans?

My days of button fly jeans are coming to a close. What's that, you say? Who wears button fly jeans anymore? I do, dammit! For whatever reason, button flys always fit the best.

Long story long, I can't grip the fly side tight enough to make it through all the buttons without resting. Believe you-me, you get strange looks when you take a jean buttoning breather.

The Lifetime Fitness Tri (my favorite race) is in 2 days. MMA really blows my mind. I can't button pants, but I can race a triathlon. I can swim a mile, but I can't tie my shoes if my hand gets cold.

Hopefully the new QR Hydrofull wetsuit will keep my arm warm enough to function in T1. I'll also be debuting new Look pedal cleats with rubber grips on the bottom. Those will be a nice confidence booster on the run through T1.

In other news, this may be the most creative thing I've ever seen:

This guy made a bunch of old redundant computer hardware perform the song "Nude" by Radiohead (skip ahead to 1:30 to get to the tune). The scanner as a bass is pure genius. I love this kind of stuff.

up & running

Behold, in all it's splendor, the monomelic-amyotrophy-tasic blog!

This baby sprang from a post I made on the MDRA blog last year.Not long after making the post another blogger commented on how it took forever for her son to be diagnosed with monomelic amyotrophy. A few months later another woman commented on her boyfriend likely having it, not being able to find info online about it.

I mean, people are googling this motor neuron disorder, and finding a running blog. That's how little info there is out there. All we know is there is no cure or treatment, and there are fewer than 200,0000 cases nation-wide.

And I thought to myself, "That's just nuts."

So that's where monomelic-amyotrophy-tasic! comes from. I'll be blogging about the disorder, how it impacts everything from swimming to biking to cooking, and I'll even link to pertinent medical research, should any be produced.

I'll no doubt be ranting about other stuff as well. It is an election year after all.