Tennies, Anyone?

I’m a low-tech kind of person caught up in a high-tech kind of disease. I now have a machine that breathes for me, one that speaks for me (have two, actually, one for the phone and one to go), an implant that swallows for me, a machine that coughs for me, another one that clears my throat (ahem), and a collar that holds my head up so I can survey the wreckage.

I’ve got more peripherals and cables than a 1990 PC. All I need is a little gizmo to scratch my butt and we’d have a fully operational human being. Throw in an inflatable doll, and voila — a Stepford Wife.

I’m wondering, does anybody need the actual me any more? Can’t I just plug it all in and sneak off to a movie while my clone wheezes and gurgles and robot talks?

I don’t use them all at once, of course. In fact, I’ve never tried the clearing-the-throat wand, since I have lost my gag reflex and I’m afraid of inadvertently removing my appendix. The cough assist is another “you’ve got to need this pretty damn bad to stick your face in there” machine. I tried it once and when I had reassembled my features, I found it amazing that anyone would actually try it twice. Still, there it looms, just waiting for me to need help coughing, when it can leap up and clamp on my face like the vacuum cleaner from hell.

Speaking of gag reflexes, and I mean this is a very complimentary way, I’ve put up with all this nonsense so far because Jerry Lewis is paying for it,** but they’ve finally gone too far. I generally go along with things as long as it doesn’t cost me anything and doesn’t hurt too bad, but now they have pushed me over the edge.

Warning: A gruesome piece of information is coming up. Reader caution is advised.

Now, they’re trying to make me wear tennis shoes and only tennis shoes for the rest of my life!

Aaaeeeeiiiii etc.

Stop, stop, people! I’ll tell you everything! Bin Laden’s in Burbank! Saddam bombed Pearl Harbor! Cheney’s a lesbian! (Oh, wait ... there’s another one?)

Not that I’m yearning to trip around in spike heels with sexy little ankle straps. Much more importantly than that, they’re taking away my Berkies! My Berkies! And there are still cute shoes available for women of a certain age... slides and flip-flops and stuff ...; that make you feel good about having feet. In fact, I bought some of them a year ago, when I was diagnosed, since I really didn’t have any decent shoes to be sick in. I think you must always dress the part.

Alas, I find out now the part requires tennies. And to make it even clearer to me, they have attached my brand new leg brace (a charming new accessory) to a left tennis shoe. The right one will be arriving in September. Brace, not shoe.

I limped out of the ortho place (I wasn’t limping when I went in to pick up the brace, by the way, because I was wearing cute slip ons that allow people to walk normally) in a stiff-legged waddle. When I get the right brace, I’m sure I won’t be able to take a step without falling on my face. Perhaps that’s the point of it all. Keep me off the streets.

A leg brace is a long heavy black thing from the knee down that wraps under your foot and holds the toes up. Long suspenders would probably work as well or maybe I could sling a toe bikini around my neck like Borat. The brace straps on with Velcro, natch. I’ve now reached the pitiful point where I have to use pliers to undo Velcro.

It turns out... insult to injury ... the brace squeaks loudly. So do the shoes. The combination comes out to a long swakkkeeekkk swakkkeeekk.

This is added to the unusual noises one’s body makes with ALS. I haven’t mentioned these before, but it’s time you know. My neurologist has explained this to me three times, and I still don’t get it, but there is allegedly a little muscle in our bodies that normally keeps our breathing quiet. With ALS it weakens, like all our “voluntary” muscles, so you get noises when you breathe. In my case, I’m getting a plaintive grunt on every exhale. (If this muscle is voluntary, you’d think I would have known about it before now.)

Anyway, I’m now walking around going: swakkeeekk grunt. Swakkeeekk grunt. Can’t wait till September when I have two squeaking, swacking braces.

If they ever feel like continuing the “Halloween” movies, I can surely do the sound effects as Michael Myers sneaks up to mass murder another unsuspecting blonde teen.

Speaking of Halloween, I’m planning to wear all my ALS gear simultaneously this year, starting with the Darth Vadar breathing mask, to welcome the little kiddos and send them screaming into the night and eventually into therapy.

Or perhaps I should just Swakkeeekk Grunt up behind them in the dark. I've got a couple months to decide.



** Muscular Dystrophy Association (Jerry Lewis’s foundation) provides massive support for patients with ALS and similar "orphan" neurological diseases. There are about 50,000 ALS patients in the US, compared to over a million with Parkinson’s, so funding for research is always an issue, and MDA is truly a blessing. And bless Jerry Lewis, from one of his kids. J’aime “Le Professeur Dingue.”

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FYI--There’s going to be a big fuss about ALS on the 4th of July. Major League baseball will be remembering the 70th anniversary of Lou Gehrig’s farewell address at Yankee Stadium with ceremonies at all home games that day. It is coordinated by ALSA ... the ALS Association ... which, along with MDA, makes a humongous difference in the lives of ALS patients.

Ode to My Morning Clog

(A Work in Progress)


O, my little feeding tube,
My precious link to life.
How I love your wayward ways,
(Put something here that rhymes with “ife.”)

O, tube of glory, chute of food,
Ensure and Boost and Cokey flow,
Whatever would I do without you?
Obama’s got a dog named Bo.**

Your quirks, your clogs, your spills and drips,
Your slimey goodness stains the rug.
Pretty as a bullet hole,
A second belly button ... ugg!

A gourmet treat three times a day,
Which taste buds never know,
Pick one: white or brown or pink,
The flavors really blow.

But still I hug you to my tummy,
Stroke your clamps and nozzles,
You dangle from my abdomen
Like a ... (Quick, what rhymes with "ozzles"?).


** OK ... you write something better. Cheesh. Everyone’s a critic.

Intelligent Design Run Amok

So far, I’ve lost my speech, and my voice is fading away fast. Now my opposable thumbs are going. That’s ten gazillion years of evolution down the drain right there.

It’s not easy getting from a one-celled amoeba to me (and to you, too, of course). Once they wiggled out of the ocean, I’m sure our ancestors wore their butts off just getting rid of the fishy smell, then they had to invent sex (and it obviously wasn’t the brightest bulb on the Christmas Tree who came up with our present system), grow body fur, then change their minds and get rid of it (must have been in a hurry on this one, as they missed a few spots), learn to walk on their hind legs, and finally -- tah dah -- invent credit default swaps and the amusing concept of “toxic assets.”

Anyway, ALS is certainly a good argument against intelligent design: if we had been designed intelligently, all our parts would wear out at the same time, not one at a time in agonizing slow motion. Or, even better, they wouldn’t wear out at all. Plus we wouldn’t have all these left-over appendages and organs.

Intelligent Designer Fans: S’plain the appendix. Even its name indicates this was never going to be one of the major players in the body. But it has no purpose whatsoever except to rupture occasionally and try to kill us. That is its sole function. What do you think the I.D. had in mind for it when he stuck it in there? Was it something like the forgetful surgeon leaving a sponge behind in your abdomen? Another “Oops Moment” of creation? Or did all the other organs not fit right, so he had to invent a little filler organ that does nothing just to keep things from rattling around?

What about wisdom teeth? What intelligent designer would put more teeth in our mouths than our mouths have room for, so the first thing we have to do when they appear is run and have them removed?

Or, male-pattern baldness? Cellulite? Color-blindness?

More importantly, ... if we were lovingly created by an Intelligent Designer, why did he invent cells that turn malignant? I call that a really serious design flaw.
And to be really serious: Why would our Intelligent Designer invent childhood cancers? Explain the design principle behind that.

I have no problem with a Higher Power ... my HP and I get along swell, and I call on him/her throughout the day and night ... but as far as the human body goes and its disabilities, failures of function, malignancies, and generally SNAFU-ness, it seems much more likely that we were cobbled together over the millennia by hit-and-miss, trial-and-error, spit-and-baling wire evolutionary forces. The human body is not something I would hold up as a sterling example of intelligent planning.

I can see it maybe designed by GM, but that’s as far as I’ll go.

You’re Fine, Thanks. How Am I ?

While losing my speech, I’ve noticed a strange reaction among people I talk with. I didn’t put quotes around the word “talk” here, because I carry a text-to-speech device with me, so I actually do participate in conversations out loud by voice, albeit slowly because I have to type my answers, and albeit not in my own voice. Still, it’s a voice.

A fine example of this reaction, which I call Sympathetic Speech Impairment, or SSI, happened yesterday at the dentist’s: As I was leaving the operatory after a consultation, the receptionist, who is a dear woman and as kind as can be, was making sweeping motions back and forth with her arms, indicating I was safe at first base. As I approached her, she sawed her arms back and forth more vigorously, then started scribbling a note. I was wondering if I should slide as I approached the reception desk or if I’d already beaten the throw, but when I got there, she triumphantly held up her note: “No charge for visit.” Ah, so.

“Free” is my favorite word in any language, but that’s another issue. This issue is why are people writing me notes to communicate with me? I’m the one who can’t talk, not them. I’ve explained to people that I am not deaf and dumb, only dumb, which I mean in the most politically correct way possible. SSI afflicted my husband when my voice became seriously unintelligible, and I started relying on hand gestures to augment conversations, pointing at things and flapping my hands in the air. while I tried to talk He started using hand gestures back at me without speaking, and I had to remind him that he could still talk ... it was me who couldn’t and who therefore had to flap.

Even my brightest friends slip into this confusion (is she deaf or is she dumb?) sometimes, making the telephone gesture to the side of their head when they say, “I’ll call you,” (Yes, I figured out instantly that you mean that you’ll call by phone rather than standing in your backyard yelling my name), or turning-a--steering-wheel gesture when they ask, “Are you still driving?”

I can’t really complain about people feeling awkward around the disabled, as I’ve been a doofus all my life when it comes to reacting to people’s disabilities. (Or fame, oddly enough. I am hugely embarrassed to see someone famous, and don’t know where to look or how to act. I generally freeze and become intently interested in something very close at hand. It doesn’t take a lot of fame to do this to me, either. Seeing someone who had a minor role in “Taxi” will cause me to closely inspect my purse zipper for 10 minutes until I feel it’s safe to look up again.)

(I was once in an elevator with Robert Redford, I think. When someone of that wattage enters a small public space, all the air whooshes out and is replaced by some sort of electricity. When he got off the elevator, the other passengers immediately let out their breaths and starting babbling about his looks, his height, his wrinkles. All I could talk about were his shoelaces, as that was all I’d seen, aside from a horrified first glimpse of his famous mug. And who knows if it was really him, anyway? To me, they didn’t look like the kind of shoelaces a famous person would wear. They just didn’t shout, “Robert Redford is wearing me.”)

But I digress.

This confusion about whether I can hear or speak or understand or respond even extends to my robot telephone text-speech persona. Typically, the answering machine will be on by the time I reach my robot phone from the other end of the house, and I and my robot voice will interrupt the message they are leaving, by saying something like: “Hello, I’m here on the phone.”

“Oh, hello. This is the pharmacy. Would you ask Beth to call me at xxx-xxxx, I need to ask a question about a prescription.”

“This is Beth. You can ask me now.”

“Thank you. Please have Beth call me back. Thank you.”

“No, don’t hang up. It’s me. I’m real, I’m alive, I’m here, I’m all ears (and a few electronic components).”

“Thank you.” Click.

The conversation doesn’t run that smoothly, of course, because there are long pauses while I type out answers, and because nobody ever expects to be suddenly talking to a live robot.

Or standing next to Robert Redford’s shoelaces, for that matter.

Life is full of surprises, isn’t it?

Orificial Business

I have always wanted another orifice.

Actually, I haven’t “always wanted another orifice”; in fact, I never thought about it till now, but you have to start these blogs off somehow.

And now that the subject’s been raised, think of the possibilities. If you could pick the location, design, and function of another orifice for your body, what would you choose and where would you put it? Or, if you could even rearrange the ones you’ve got, would you? Or are you satisfied with the status quo?

Personally, I think some are just too hard to reach, and all of them are poorly laid out, but I hate to criticize the Cosmic Creator. He/She did such nice work in other areas.

Anyway, thanks to ALS, I’m going to get a new mouth, sort of, which will be a very interesting experience, I think. I won’t get to pick where it goes, as that will be up to the doctor who installs it ... but I’m guessing it will go in somewhere north of the belly button and south of the boobs. That’s OK with me, since I don’t wear bikinis. Probably walking around a beach in a bikini with a feeding tube hanging from your mid-section would lead to a lot of tedious explanations.

The interesting part about a feeding tube is that you can still eat by (your original) mouth if you choose to, so there are going to be fascinating improvements on the whole art of eating. It will open up a whole new door for recipes: 1 tablespoon peanut butter by mouth, 1 tablespoon jelly by tube and do the hokey pokey till you mix them all about.

I’ve only begun mapping out future meals, but clearly broccoli will go in the feeding tube, chocolate will go by mouth, to keep my taste buds amused. Pills will go by tube, pizza by mouth. I thought of launching the tube with a shot of Bacardi, followed by Diet Coke by mouth, but, alas, I haven’t had a drink for 29 years (and boy, am I thirsty), and I’m going for the record. Of course, technically, that wouldn’t be drinking, would it? Hmmmmmmmmm. Maybe I'll think some more on this.

The point of a feeding tube is that people with ALS can develop problems swallowing, and thus risk the danger of choking or (even worse) the aspiration of food or fluids into the lungs, which can lead to pneumonia. A feeding tube directly into the stomach bypasses the whole shebang, and also probably lessens wear and tear on your jaws from chewing. It certainly should prevent heartburn. Unfortunately, it can’t prevent aspiration pneumonia, since ALS patients can choke on their own saliva (this takes talent and a lot of saliva), but I’ll worry about that when I come to it.

The other breaking oral news this week is that, even before the feeding tube arrives, liquids are finding new escape routes from my mouth. Now when I take a drink of something, half goes down my chin (no lip seal ... I believe we’ve discussed this already), and now half goes out my nose. (Did you know we all have some kind of little nose sphincter that can stop working? Aren’t you learning a lot from this saga? I sure am. I wonder how many other sphincters we have that no one tells us about till they stop working.)

I expect the next development will be taking a sip of liquid and finding it squirting out my ear.

Also, I discovered this week that when I scratch the top left side of my scalp, my right nostril twitches. Bet you can't do that.




I

Aside From That, Mrs. L . . .

I don’t know if it’s me or the medical profession (I’m just kidding—I know it’s the medical profession), but every time I have a conversation with a doctor, things get surreal.

Just had my yearly checkup, which, given the circumstances seemed a little unnecessary, although I thought it would be interesting to learn if there’s anything going on that might kill me before ALS does, and at the end of the exam, my darling doctor (she is a peach) said, and I quote: “You know, aside from the ALS and the heart disease, you’re really in very good shape.”

I wonder what I have to do to be considered in lousy shape by this woman. Get run over by Amtrak?

(And aside from the engine and transmission, my car is in very good shape, too, except for the brakes and the tires.)

I promised no more obits, so let’s switch to my tombstone:

She Is in Darned Good Shape
Considering She’s Dead and All

____________________________________________

Ok, enuf of that.

I’ve been rooting for Barack since the California primary, and holding my breath and trying not to jinx the election by being overconfident, and sending tiny checks and thinking “it’s impossible but maybe it’s not, maybe it’s a teeny, tiny bit possible” and it turns out it was very, very possible.

And I had the strangest reaction to Obama’s resounding victory. I mean, he clobbered them. And for the first and only time in my life, I felt proud to be white. And that is a very strange feeling indeed. I wanted to run around screaming, “See, we’re not all bigoted jerks, and now I can prove it.”

We must take good care of this man, because he’s going to be one of the great presidents, and he’s going to turn this country around. And boy, does it need turning.

You betcha.

Sunrise, Sunset ...

OK, enough is enough.

I have been waiting since 1945 for the U.S. government to get its act together regarding daylight savings time. We gave up growing Victory Gardens in our backyards when The War was over, and food and gas rationing also went away, not to mention those sad little banners with red stars we put in our front windows showing that we had a family member in the military, or even sadder, gold stars meaning our soldier had been killed. The term “gold-star mother” was eliminated from our vocabularies. We stopped buying war bonds, and the Friday grammar school ritual of bringing a quarter to buy a stamp to stick in our war bond booklet until we had amassed $18.50 for a complete war bond went away, too.

Housewives stopped saving grease and tin cans and kids stopped saving tin foil gum wrappers to help the war effort. Soldiers and sailors and marines and WACs and WAVEs came home, we tidied up the big mess Hitler had made of Europe and sent Care Packages to hungry people overseas, and life returned to what I assume was normal, because I can’t remember much before the war.

But ... freakin’ daylight savings time is still with us! Why is this?

This utterly stupid idea started in 1918, during the First World War, and was abandoned in a hurry in 1919 because everybody hated it. It was brought back in 1942 when America entered the Second World War, in order to save energy and permit longer working hours. It was called “War Time” then, and it was in effect all year long. No switching back and forth. After the war, the Feds abandoned War Time, but some states kept it, some didn’t. The railroads fussed and fussed because every state had its own system. So finally, in the 1960s and 70s, uniform time laws were passed incorporating "War Time" for everybody, and now we all have to change our clocks twice a year together. To what purpose, nobody knows.

Everyone in favor of daylight savings time, raise your hand. I didn’t think so.

Did I point out that this is stupid? How about dangerous, too. Heart attacks increase in the three days following the spring change. Traffic accidents go up. Pedestrian fatalities skyrocket in the fall after the change as drivers adjust to driving at dusk. Everybody gets annoyed and grumbles. This idiot law has no purpose and no function.

So, apparently, I will have to solve this for the U.S. government.

Here’s what we do: Compromise. Let’s change our clocks by 1/2 hour and leave them there forever. OK? Is everybody happy now? You’ve got a little extra sunshine at the end of the workday for everybody who cares about that stuff, and a little extra darkness in winter for everybody who wants that, vampires or whatever.

QED
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On the Lou Gehrig’s Disease front, there is more good news coming from Washington, to wit, the application time for social security benefits has been speeded up for fatal diseases with short lifespans, including ALS. (If our bureaucrats can figure that one out, how come they can’t figure out that daylight savings time isn’t saving anybody any daylight or any time?)

Also, a new ALS online forum has just been formed to try to increase public awareness of Lou Gehrig’s Disease. We’re hoping that not only patients with ALS and their caregivers will join this effort, but also family members and friends of patients ... and also members of the public who want to pitch in with ideas and help support the search for a cure. (It’s a free forum ... we’re looking for moral support, ideas and helping hands.)

The forum is called ALS Matters: You'll have to cut and paste the url, because I cannot for the life of me make this program put in a live link:
http://www.alsmatters.org/index.php

You’re invited to check it out, and join us (i.e., register) if you’re interested.

As for me, I’m still here. Yabba dabba doo.