Tuesday, April 26, 2016

Singing in the Shower

Despite my overwhelming medical problems, I don’t exhibit any symptoms of depression. Shouldn’t I, though? I sometimes wonder if there’s something wrong with me – if I am in denial, or if I’m just crazy. I keep on the lookout for despair, expecting to see it around the next corner, but thankfully I never do.

We have a radio in our shower, and I often find myself singing along to the oldies station.
Imagine there's no heaven
It's easy if you try
No hell below us
Above us only sky
Imagine all the people
Living for today...
This singing happens organically, spontaneously. I don’t plan it. Is it an expression of my inner happiness, or is it something I subconsciously do to induce happiness? Is it a cause or an effect? Doesn’t matter.
My child arrived just the other day
He came to the world in the usual way
But there were planes to catch, and bills to pay
He learned to walk while I was away
And he was talking 'fore I knew it, and as he grew
He'd say, "I'm gonna be like you, dad
You know I'm gonna be like you.…" 
Sometimes I realize that I’m singing and reflect upon it. I become happier still about the fact that I remain capable of experiencing spontaneous joy despite my circumstances. Strong medicine, this singing in the shower.
Aruba, Jamaica, ooh I wanna take you to
Bermuda, Bahama, come on pretty mama
Key Largo Montego, baby why don't we go
Ooh I wanna take you down to
Kokomo, we'll get there fast and then we'll take it slow
That's where we wanna go, way down in Kokomo.…
As long as these old songs continue to have this effect on me, I think I’m in great shape. If I stop singing, that’s when I’ll worry. 
Every time I look in the mirror
All these lines on my face getting clearer
The past is gone
It goes by, like dusk to dawn
Isn't that the way
Everybody's got their dues in life to pay… 
I am the world’s worst singer. For that reason, you’ll never hear me sing unless it's in the shower, in which case I may feel compelled to ask you what the hell you’re doing in my shower. 

Wednesday, April 20, 2016

My Year on Biotin

If you’ve read this blog, you know the drill. I have an incurable disease. Cause unknown. There is no treatment. Fifteen years in, I require a power wheelchair to get around, and I’m completely dependent on others, yada yada yada.

Despite the fact that there are no FDA-approved treatments for primary progressive multiple sclerosis, I can’t help but experiment. Here's what I’ve tried so far:

Novantrone (2001 – 2002): Intravenous infusion. A cancer treatment with potentially dangerous cardiac side effects. Used for one year. Didn’t help.

Copaxone (2002): A painful, daily, self-injection. Used for six months. Didn’t help.

Oral Methotrexate (2002 – 2003): A pill. Used for one year. Didn’t help.

Low Dose Naltrexone (2004): A pill. Used for three weeks. Felt worse, not better.

Rituxan (2005 – 2009): IV infusion. Worked well for the first year. Worked less well for second. Didn’t work for third or fourth year.

CCSVI treatment (2010, 2011): Procedure similar to balloon angioplasty. Had one in 2010 and another in 2011. Neither helped.

Intrathecal Methotrexate (2012 – 2015): Spinal tap injections. Used for two years. Worked for the first year. Didn’t work for the second year.

In early 2015 a drug called Biotin burst onto the scene. Specifically, high doses of Biotin showed effectiveness in early trials for primary and secondary progressive MS, forms of the disease that have no FDA-approved treatments. In April of last year, I found a compounding pharmacy to provide me with 100 mg capsules. I’ve been taking three a day. You can read my other Biotin posts here. Having completed one year of treatment, this is my conclusion:

Biotin (2015 – ): A pill. Used for one year. Didn’t help.

This year I’ve noticed disease progression primarily in my hands. A couple of years ago I thought my left hand was essentially useless. Today, that’s where my right hand is, and it’s my good one. My left hand sits in my lap all day long, contributing almost nothing to my existence.

Biotin research continues, but I have a sneaking suspicion it’s not going to be the answer we had hoped for. At this point – one year without success – I would normally terminate a treatment. I’m not quitting Biotin right now, however. There’s nothing else to try, and treatment seems harmless. I’ll continue for a while in the hope that it takes more than a year for this drug to kick in, as unlikely as that seems.

Or, I may stop at any moment. I don’t know. I just don’t know.

Tuesday, April 12, 2016

In a Previous Life …

Marco and I go way back. We met as freshmen chemical engineering students at the University of Maine in 1982 and have been close ever since. I worked hard and earned top grades over those four years. Marco worked harder and got even higher grades. Later, we were both employed as engineers at Lincoln Pulp and Paper. I put in long hours, and my career progressed. Marco put in longer hours, and he became the mill manager. Today, he is a VP at an international paper company, and I couldn’t be happier for him.

Marco and I see each other infrequently these days. But we recently met for breakfast at Q Street Diner, a throwback, greasy spoon diner maybe 300 yards from my house.

The conversation could have gone in either of two directions. We might have reminisced about all the fun we had in our 20s and 30s snowmobiling or hanging out with our friends in Lincoln. But on this day, the discussion bent toward business, something he’s still involved in and I’m not.

Marco is overseeing the expansion of a mill in Woodland, Maine – an investment of well over $100 million. He is one of the most knowledgeable pulp and paper minds around. Me? Although I lived that industry for 13 years, I hadn’t had an opportunity to talk pulp and paper much since I left the Lincoln mill 16 years ago. Over breakfast we began to discuss the basics of his project and his new position. I proceeded cautiously at first, unsure of my ability to carry on an in-depth conversation on these subjects. Then the strangest thing happened. A part of my brain that had been ignored for so long suddenly awoke. Neurons that had lain dormant for years began to fire, feeding me tidbits of information I would never have imagined I still possessed.

I asked probing questions and used technical jargon. It all came rushing back, and I was thrilled with my powers of recall.

“This is fun. I haven’t talked pulp and paper in so long,” I said.

“You’re doing a pretty good job of it,” he replied.

What a satisfying breakfast. To top things off, Marco picked up the tab.

In a previous life, I defined myself in large part by the work I performed. Because of MS, that identity is gone. But I don’t lament the loss. What good would that do? I still have a meaningful life, and I’m determined to make the most of it.

Wednesday, April 6, 2016

My Pet Peeves

I didn't write an essay this week, so I thought I would roll out one of my favorite old posts. In this lighthearted video, I address a few of my  pet peeves. Enjoy.

If you are receiving this post via email, click here to watch the video.