It happens every spring

No time for a post now. To find out why, click here to visit a full post on my other blog, Scribbling in the Sand.

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Wake up and smell the smoke.

Last I checked, it’s 2018. The human race has come a long way over its checkered history, building up vast storehouses of scientific facts and information. All our increased knowledge has led to increased wisdom, right? Not so fast, blog-breath. For some unknown reason or reasons, there are still people out there—a lot of people—who just don’t get it.

Take, for example, the continual morbid parade of those who drink and drive and kill. All our intellectual growth has managed to do is give us new ways to kill while we drive: Now we can be stone sober and kill while texting. We know it’s crazy. We know it’s deadly, but we still do it! At least drunks can claim that they didn’t know what they were doing when they got behind the wheel. Texters are just plain foolhardy.

I know a lot of folks who don’t take recycling seriously. Do they think the world has unlimited resources and dumping grounds? Do they not have children who will have to deal with the results of their negligence? And while I’m on the subject, why are companies still producing plastics without recycling symbols?

If you have MS or another mobility issue, you can freely attest to the fact that many people continue to unnecessarily and illegally take up handicap parking spots. I’ve seen cars occupying two spaces at a time. Now that’s despicable, and not in a cute, animated way.

Worst of all, people are still smoking cigarettes. To use the modern parlance: Seriously???

It’s not as if we don’t know better. Since 1966—that’s 52 years, folks!—packs of cigarettes have sported increasingly stern warning labels about their health dangers. It started with the relatively innocuous:

Caution: cigarette smoking may be hazardous to your health

The surgeon general (remember, folks, he’s a general; you should listen to him) upped the ante and the truth factor in 1969 by going to:

Warning: The Surgeon General Has Determined That Cigarette Smoking Is Dangerous to Your Health.

While a word to the wise might be sufficient, a word to the average addicted, advertising-indoctrinated American consumer is anything but. Now we see a variety of terrifying notices, such as:

WARNING: Smoking Causes Lung Cancer, Heart Disease, Emphysema, and May Complicate Pregnancy.

Yet, people persist in puffing away their health and well-being. And not just their own, but that of their children:

WARNING: Smoking by Pregnant Women May Result in Fetal Injury, Premature Birth, and Low Birth Weight.

…and everyone around them who breathes their stinking, poisonous second-hand smoke:

WARNING: Cigarette Smoke Contains Carbon Monoxide.

Side note to my neurologically-challenged friends: smoking has been connected to the onset of MS in addition to the usual suspects of cancer, COPD, heart disease, et al.

What kind of power does this little stick have that people world over are willing to put their and their loved ones lives on the line for it?? Not only that, but we pay for the privilege! More every year! From a cost of about 33¢ a pack 50 years ago to about $10 here in MA today (almost $13 in NY). That’s 4-5 times the rate of inflation. Those figures show only the direct cost of this heinous beast. The medical expenses incurred because of its use are about $300 billion a year according to the CDC.

The true cost is measured in more than money. It’s measured in the loss of the ones we love. My mother would likely still be alive today, had she not been addicted.

The sick joke is that we only lose those worthless years at the end of our lives, so who cares? (Well, my mother’s children, grandchildren, and great-grandchildren care.) But it’s not only length of life. As my MS friends will testify to those scoffers, quality of life is the real issue at stake. For instance, there’s the person I knew who, besides eventually losing life to COPD, had previously lost the ability to taste, to swallow, and to breathe unassisted. I once met a woman who was only about 40 when she was consigned to toting around an oxygen tank for the rest of her life because of her habit.

The thing is, we know it kills. In a classic case of dissociative disorder, a condition that is pandemic in our country*, smokers ignore the facts or pretend they’re exempt from reality. News flash: Denial doesn’t help. Strangely, we as a country spend about 30 billion dollars a year on health club memberships, most of which, it’s safe to assume, are never used. Maybe none of the folks in the fitness centers are smokers. Yeah, right.**

Please, stop smoking. You’re killing yourself. You’re killing others. You’re taking yourself away from the ones you care about far too early. You’re stinking up and poisoning the world for the rest of us. You’re throwing away hundreds of thousands of dollars over your (abbreviated) lifetime. You’re trashing this world. You’re relinquishing control of your life and resources to the tobacco companies, who know exactly what they’re doing to you and don’t care.

If only for the sake of people with MS, Parkinson’s, epilepsy, ALS, and the many other conditions over which they have no control, take control where you can.

Do you really need any more reasons?

* Other examples of the disorder: playing the lottery, the proliferation of guns in homes for our family’s “safety”, climate change, inactivity. There are many, many more.

** My favorite example: Recently I watched a yoga class being held in public. (Why it was out there for all to see is beyond me.) The yoga instructor was smoking a cigarette the entire time! Who would take instruction related to health from a smoker?!?! Punch in, folks!

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A pronunciation pronouncement

It’s news to no one that MS is hard. There are medications of all kinds that are supposed to make it easier. Yet even if they work they make our lives more difficult.

Many are way too hard to pronounce.

Case in point: Ampyra. Looks easy but no one can agree on how to say it. Is it am-peer-ah or am-pie-rah? A representative of Acorda (I know how to say that. Go figure.) was at a symposium not too long ago so I posed the question to her. She was non-committal. She was good with either one. I guess if we’re shelling out more than a grand a month for it, we get to call it anything we want.

Not good enough! There is so much uncertainty with MS, pronunciation of the drugs should be cast in stone. And easy! One less thing to worry about.

The newly approved Ocrevus is a nasty one. Is the “e” long or short? Is the emphasis on the first syllable or middle? Or (heaven forbid) last??? :-O I struggled with Tecfidera for weeks until I got a definitive pronouncement on that one. I’m still not confident about it.

And what about the rest of them: Tysabri, Mitoxantrone, Gilenya, Plegridy, and so on? I only remember Lemtrada because it sounds like the “Forbidden Dance”, the lambada. Is that a coincidence? Here’s one I’ve never even heard of: Zinbryta. No way I’m even trying that one. It sounds like it has to be prescribed by Dr. Seuss.

Give me Aubagio any day. It rolls off my tongue because I’m Italian and it sounds like something from a menu at an Italian restaurant. (“Hey, paisan! You want a side of Aubagio with your pasta fagioli?”)

Add “confusing pronunciation” to the lengthy list of side effects for these beasts.

In the spirit of practicing gratitude as a therapeutic approach to MS, I suppose I should be thankful we aren’t saddled with the scientific names. Would you want to ask your doctor for teriflunomide, glatiramer acetate, or alemtuzumab? So if you’re changing the name anyway, why not go with something simpler, say, Smith, Lorp, or Flant? True, they mean nothing related to the medicine’s purpose or composition, but can anyone tell me what information Extavia gives us?

Look, we already have to deal with words like exacerbation and subcutaneous. Why not cut us some slack on words you’re making up?

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What my MS says about you

[Back on November 8, before this blog went on a self-imposed hiatus, I mentioned the following concept, musing that I thought I’d written about it already. Chalk it up to my MS-addled brain creating false memories. I’ve searched and can find no evidence of such a post, so here goes (again?)…]

Based on personal experience, the way people have responded to the news that I have MS reveals a great deal about their personality and temperament. Here are a few examples:

I told a friend who is a financial executive. He went on and on about how I should protect my belongings, invest what I have, and sue my employer.

A young woman who happens to be one of the most positive people I know responded to the news of my RR-MS diagnosis, “At least it’s the best kind.” Reminds me of the old joke about the guy who fell off a 50-story building. As he flew by the 15th floor, he was heard calling out, “OK so far!”

One of the most pessimistic people I know immediately informed me of the person he knew who died of MS. Gee, thanks.

A very sensitive young male acquaintance of mine simply started to cry.

Many people say nothing at all, scared off by bad news they have no capacity or experience to process. In that sense, MS is a great filter. It siphons off fair-weather “friends” and hangers-on who can’t deal with reality. I’m probably better off without that kind of person in my life anyway. For example, there was a guy I used to work with who I often talked to at length about all manner of topics such as family, sports, vacations, and even, on occasion, work. From the moment I told him I had MS, he never spoke to me again. In fact, I’m not sure I ever saw him again.

A truly inexcusable reaction came from the manager I reported to who never had any idea what I was talking about. He had no clue what MS was and showed no inclination to find out. To this day, I really think he believed my limp and cane were for an ankle sprain. It’s not as if this guy had a hundred (or even a dozen) people reporting to him. I was one of about four people he managed. Yet he was too busy to concern himself with the details of one of his employees having a chronic illness, an illness that caused me to leave the workplace while I was on his team.

As we all know, the worst reaction is this one:

But you don’t look sick.

To which I now have a wonderful and apt response, courtesy of a comic a friend sent me recently:

And you don’t look stupid. Funny how looks can deceive, huh?

Let’s see what kind of reaction that gets.

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Welcome to Haiti, the s***hole

When a well-known racist refers to an entire nation of black people as a s***hole, what is he implying about its residents? He’s implying nothing, subtlety being beyond his middle school intellect. He’s saying outright that, in his opinion, the citizens of Haiti are s***. I know different. No one should believe the rantings of a narcissistic madman, no matter what position he lays claim to.

By sad coincidence, today marks the anniversary of the earthquake that killed tens of thousands of Haitians and left millions homeless. Another sad fact is that, if Haiti is in a hole, it’s one that has been dug by oppressive forces of this and other wealthy nations.

I was in that s***hole less than two months ago. Here are some photos I’ve taken there over the years. Draw your own conclusions. Is it a s***hole or is this the lie of an a**hole?

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What am I waiting for?

As a Christian, a follower of Jesus, I’m supposed to rely on the Bible as my rule of faith. Indeed I do. The Latin phrase, sola scriptura, is used to describe the doctrine to which most conservative Protestants ascribe: by scripture alone.

In general, I’m OK with that, although the more conservative among us take it too far, declaring that all scripture is to be taken literally. Taken to its extreme, this would lead to some pretty bizarre ideas. For example, Psalm 91 says:

He will cover you with his pinions, and under his wings you will find refuge…

If we take this verse literally, God must be a bird. But He isn’t so we’re missing something. Some of scripture is poetry and uses poetic imagery never meant to be taken literally.

The other extreme to which sola scriptura can be taken is to believe that God never reveals Himself through any other means than scripture. Even the Bible denies this claim. The writer of Psalm 19, believed to be King David, sings:

The heavens declare the glory of God,
and the sky above proclaims his handiwork.
Day to day pours out speech,
and night to night reveals knowledge.

So His creation speaks truth to us as well. This Christmas season, He used another, more unlikely channel of communication to get my attention. A fortune from a fortune cookie.

Chinese food is a favorite around the holidays, especially New Year’s. What with everyone making resolutions (which will be broken faster than a two-year-old’s Christmas toy) fortune cookies were made for this time of year. I love the cookies and the fortunes. It helps that I’ve gotten some of the coolest fortunes over the years. The most outrageous one ever said the following (I am not making this up):

You are the only person who can determine the whereabouts of Yma Sumac. Do it.

This was before the age of Google and Wikipedia, so taking on that task was daunting. I’m proud to say I succeeded.

The best fortune of all was one I got with my meal on New Year’s Eve 1984:

A very special child will soon enter your life.

Ten days later, my first daughter was born. Can’t get much better than that.

Now to this year and a message that honestly shook me.

For the past several weeks, I’ve had all the motivation of a slug. I’ve written nothing, including blog posts. (Has anyone noticed?) I’ve accomplished next to nothing. I’ve been lax in many of my responsibilities. What I needed was a good swift kick in the glutes. It came in the form of this fortune:

How about that for a direct hit? It wasn’t scripture, but I believe 100% it was a message from God to me. Since getting whacked upside the head with that, I’ve finally made some progress in projects I’d been putting off. You’re reading one of them.

It’s unlikely I’m the only one who got that fortune. I can’t imagine the fortune cookie people make many one-offs. Could it possibly have been meant for you, too? Perhaps that’s why I’m writing this post: To spread the message to others who need it.

If you’re one of my readers with MS, then I hazard a guess that this word could be aimed at you. When it comes to MS, moving is one of the best things we can do. (Another biggie is staying connected… in person.) I partially credit that idea with the current good state of my MS. (See the “B” part of the PB&J MS Treatment for details.)

There you have it: God speaking to you through me: Get moving. Don’t worry, I won’t let it go to my head. After all, He spoke through another jackass once.

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Going mobile…

Whatzit? Answer embedded in text below.*

One of the most fascinating things about MS is that it reveals a lot about those who don’t have it. When I tell someone I have MS, their response (or lack thereof) tells me about all I need to know about them and my relationship with them. (I could have sworn I’d written a whole post about this topic, but I can’t find it. Oh, well, why not do it anyway?)

Another revealing aspect of people’s reactions to MS (and the disabled in general) came up recently in a conversation I had with a friend of mine. She generally uses assistive devices of one kind or another to get around. Depending on where she’s going and what she’s doing, she might use a power scooter, a wheelchair, or a walker. It turns out that, when she’s out in public, people have different reactions depending which apparatus she’s using.

The walker, my friend tells me, arouses pity more than anything. She sees it in their eyes: “Better you than me.” After all, who would use a walker unless it was absolutely necessary? She gets the most positive reactions when she uses her wheelchair. People smile and help as if, as she puts it, they’ve taken sensitivity training.

No such kindness is demonstrated to her when she’s in her scooter. Maybe it’s the way they’re marketed or how they’ve been used as jokes in popular entertainment such as “Seinfeld”, but people resent them. The expressions my friend sees send the message, “You don’t really need that thing.” People in scooters are viewed as lazy, some kind of freeloaders who don’t want to pull their weight.

Comparing notes, I’ve confirmed what she has observed. The only assistive equipment I’ve used are a cane, a leg brace, and an FES device, but each brings forth its own set responses from observers. The cane is the most benign. I’ve had people nearly start crying at the sight of it. Others insisted on helping me, even when I didn’t need or want it. The orthotic leg brace (*that’s the picture above, though it’s upside down to make identifying it more of a challenge) freaks people out. Most have never seen such a beast and can’t figure out what it’s for. And they never ask.

The FES device is a great conversation starter. No one wants to talk about why it’s needed, but the technology is so cool, it always draws comments. Are you a cyborg? Part of the Collective? (Resistance is, indeed, futile.)

If I didn’t want to deal with those reactions, the only alternative was to wobble around like a Weeble (except we do fall down) and let everyone think I was drunk. That can have its upside unless I’m driving. :-O

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