Tuesday, December 25, 2012

Merry Disabled Christmas 2012


From 2010...

Merry Disabled Christmas

A christmas tree.Image via WikipediaThis year I endured disabled surgery
And read disabled books
I contributed to a disabled charity
And thwarted disabled crooks

I sailed on a disabled cruise
And piloted my disabled iBot
I sat for disabled interviews
And the good disabled fight, I fought

I starved myself on a disabled diet 
And took a disabled shot at a deer
I appreciated nature, and disabled quiet
And quaffed many a disabled beer

I hand-peddled my disabled bike
And hand-drove my disabled van
I spent disabled time with people I like
And I was a loyal, disabled, sports fan

I spent too much money on disabled wheelchair parts
And I made many a disabled friend
I touched a few disabled hearts
And a thousand disabled emails, I did send

It’s not that life is unfair
As you know, I’m not one to complain
You play the cards that are dealt you
If you live in the jungle, you better enjoy the rain

So during this holiday season
I urge you to seek out contentment
Don’t spend time searching for a reason
To feel self-pity, jealousy, or resentment

I’ll end my cryptic verse right here
And offer this sentiment to those most dear
I wish you a Merry Disabled Christmas
And a Happy Disabled New Year!

Wednesday, December 19, 2012

Consider These Issues…

Symbol of Confusion
(Photo credit: Wikipedia)
…because I can’t decide on just one topic this week.

Quote of the week

Agree or disagree?

“The reason people find it so hard to be happy is that they always see the past better than it was, the present worse than it is, and the future less resolved than it will be.” Marcel Pagnol

Many people suffering from progressive diseases would disagree, but more on this quote later…

WEGO Health Activist Awards

WEGO sponsors health activist awards to honor leaders who make a real difference in healthcare through their online efforts. One or more of you was kind enough to nominate me this year for “Best in Show Blog.” Thank you. Please look over all the award categories and nominate your favorite online health activists.

Update on Intrathecal Methotrexate

As I explained here, I now believe that intrathecal methotrexate is having a significant, positive effect on my disease progression. I’m not getting better, but I’m getting worse more slowly or not at all (for the moment).

This week I had my sixth spinal infusion of methotrexate. It went horribly. The doctor spent a long time poking and prodding before he found the spot. I don’t blame him. I seem to be anatomically challenged in this regard. But most importantly, I suffered no post-lumbar puncture headache, and I am no worse off for the harrowing experience. It’s a small price to pay.

Update on Christmas Cards

I recently spent an entire post describing how I would still send out traditional Christmas cards this year. The very next day I received such a lovely, online Christmas card that I was swayed. So I sent out about half of my cards this year as the online variety. Check out this website. I think it’s amazing.

images (1)Subjects I May Blog about in 2013

I’ve been percolating on a few ideas for blog posts next year.
  • Self-driving cars: This technology is advancing rapidly. Why do I care? Because if I can own a self driving car, I’ll be essentially back in the solo driving business, as will many disabled people.
  • Euthanasia: I’ve long been a believer that it is an individual’s right to die according to their own wishes. As a person with a condition which could at some point render life unbearable, this issue is particularly relevant for me, and I wish to advocate for others who feel the same way. Don’t worry, I’m very far from pulling the trigger, so to speak, myself. This is a potentially touchy subject, so I want to have some research complete before I launch my advocacy efforts.
  • Disabled travel: Kim and I have a winter vacation planned in Jamaica this year. You can be sure that I’ll write several posts about the trip, and share photos as well.
  • Continued updates on intrathecal methotrexate.
  • My neighborhood overhaul: Throughout the summer of 2012 my entire neighborhood was refurbished. We have new street tops, sidewalks, and attractive landscaping. Wheelchair accessibility wasn’t bad, but now it is even better. At some point I will make a “Neighborhood Excursion” video and share it with you. I may have missed the weather window for this year, so look for a video in the spring.
  • Another video blog: My first video blog last year, My Pet Peeves, was well received. These Vlogs are a lot of work to produce, so I haven’t attempted one since, but I hope to in 2013. Any suggestions for the subject matter?
  • Continued updates on Save the iBot: Unless something changes in the next 12 months, 2013 will be the last year that the iBot is supported for service and parts. But stay tuned, because I haven’t given up yet, and neither has America’s Huey 091 Foundation.
  • Memories: From time to time I will ask that you indulge me as I write about certain memories of mine that may be unrelated to multiple sclerosis or disability altogether.
  • Recycled posts: The most dedicated readers among you may have noticed that several of my posts this year were updated versions of posts from previous years. I reserve the right to do that because I usually improve the post from its original, and let’s face it, some weeks I just don’t have time or energy to come up with original material.
Thoughts on Violence

For those of you who cite the Sandy Hook school slayings as further confirmation of the moral decline of our society, or as further evidence that violence in our modern world is getting worse by the day, I have some good news for you. Recent events notwithstanding, the overall level of violence in the world is declining, and has been for a long time, despite what our 24/7 media outlets would have us think.

This long-term trend towards less worldwide violence is expounded upon in some detail by Steven Pinker in his outstanding book The Better Angels of Our Nature. If you don’t want to tackle this 832 page behemoth, but you’d still like to hear the basic arguments, then I suggest you watch this TED video.

By no means am I trying to downplay the horror of what happened at Sandy Hook or other well known mass-murders. The world is still a violent and scary place, and we need to continue to advocate for social change that deters events like this from happening. But just know that, in the big picture, we live in the most peaceful time that mankind has ever known.

This is where I think Marcel Pagnol’s quote hits the mark.

“The reason people find it so hard to be happy is that they always see the past better than it was, the present worse than it is, and the future less resolved than it will be.”
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Thursday, December 13, 2012

Christmas Cards

Christmas postcard date unknown, circa 1900.
Christmas postcard date unknown, circa 1900. (Photo credit: Wikipedia)
I can be pretty anal sometimes. For example, I keep track of all our spending, to the penny, in Quicken. I use Google Calendar to manage my time, including three reminders each day to take pills and a daily 4:00 reminder to watch Ellen. I have an elaborate document filing system that preserves the last seven years’ worth of mostly useless paperwork. Perhaps most telling, I can’t imagine how anyone could lead a productive and happy life doing anything less than what I do. Seriously.

But the epitome of my anality might be my system for managing Christmas cards.

I have an Excel spreadsheet that tracks every Christmas card we’ve sent or received for the past few years. Well, actually, for the past 22 years. One of my great disappointments, and something that I can never go back and change, is the fact that I didn’t do this for the first 4 years of our marriage. What was I thinking? How did I manage my Christmas cards back then? Did I, gulp, write it all down on a piece of paper?

For each person who we sent or received a card from in the past 22 years, I have columns for last names, first names, street address, city, state, and zip. After that I have a column for status – either active, inactive, or receive only. Then, for each year since 1990 I have two columns – sent and received. I put an X in the appropriate column(s).

We (and when I say we, I mean I) have some loosely enforced rules about whom we send Christmas cards to. For example, if we’ve been exchanging cards with one another for a while and you skip a year, that’s okay. You are forgiven (we are not a monster after all). But if you skip two consecutive years, that’s it. No card for you! However, we have granted several exemptions. My good friends and lifelong bachelors, David in Las Vegas and Louie in Cleveland, each get a free pass. Old people who simply can no longer manage to send out Christmas cards get a pass. Kim’s college roommates, Becky and Dawn, who just aren’t Christmas card type people, are each lucky recipients of a lifetime pass. We’re going to keep sending these people cards every year whether they like it or not. After all, they cannot employ an automated spam folder for snail mail, now can they?

Queen's Christmas tree at Windsor Castle 1848,...
Queen's Christmas tree at Windsor Castle 1848, adapted for Godey's Lady's Book, December 1850 (Photo credit: Wikipedia)
In our division of marital duties, I’ve always been the Christmas card guy. But thanks to MS, and what it’s done to my hands, I’ve had to drag Kim into this annual task. I still manage the Excel spreadsheet. I use Microsoft Word to extract data from the spreadsheet, creating a mailmerge document that I then print out using special label paper. This way Kim doesn’t have to write out the addresses on the envelopes by hand. Until last year I could still help with certain tasks like putting the stamps on the envelopes. Now, all those handsy jobs are completed by Kim.

I do consider the big picture once in a while. Must we continue with Christmas cards, at least in this way, indefinitely? First, I’m a modern, tecky guy (for someone my age). Isn’t there a way to accomplish this using online tools instead of the post office? I haven’t done a lot of research on the matter, but it seems unlikely that sending a virtual Christmas card would create such a warm, fuzzy feeling on the receiver’s end. This may not always be the case, but I think it is for now.

Second, I have to ask myself if all the work associated with sending out Christmas cards is worth it. How many people would think less of us if we didn’t? But we have such a long history (well-documented, at that) of sending cards that I hate to lose our momentum. For many people on our list, this is the only time we communicate with one another all year. And I must admit, it’s kind of fun to receive as many cards as we do. I assume, however, that if we stopped sending cards we would stop receiving them. So, for now we are forging ahead, but I can’t guarantee that at some point in the future we won’t let ourselves off the hook.

Incidentally, you may wonder why a blasphemous heathen like me sends out Christmas cards at all. Well, it’s because I choose to celebrate a secular version of Christmas. If you are a fellow atheist who thinks I’m selling out by participating in a Christian holiday, get over it. If you are Christian and you don’t feel that I have the right to participate in what you may consider your holiday, well, Christmas makes me happy. End of story.

Now back to the topic at hand...

I’d like to know your thoughts on Christmas cards. Do you participate in this age-old tradition? How do you make the job easier or add more depth and meaning to your holiday correspondence?

And finally, for all of you who enjoy Enjoying the Ride, whether you are in my Excel spreadsheet or not…

May Peace, Joy, Love and Good Health be yours during this Holiday Season and throughout the New Year.

Season’s Greetings from The Sturgeons!
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Thursday, December 6, 2012

Intrathecal Methotrexate - It’s Working

Illustration of two glasses toasting
(Photo credit: Wikipedia)
At least I think it is.

Despite all of the media optimism about how this is “a great time to have MS,” there remains no FDA approved disease modifying treatment for Primary Progressive Multiple Sclerosis. For people like me with PPMS, today there is nothing more to combat our disease progression than there was 5 years ago, 50 years ago, or 1000 years ago. It’s not a great time to have PPMS.

But just because treatments are supposed to be FDA approved before we use them doesn’t mean that there are no treatments which could potentially help us. Sometimes you just have to be creative. With that in mind, I’ve tried a variety of treatments, some rather mainstream and others fairly radical. Nothing has helped.

Then I had my first spinal injection of a chemotherapy agent called methotrexate, back in March of 2012. I’ve received follow-up injections every eight weeks since. My sixth one is scheduled for later this month. Until now I’ve been uncertain about whether or not these treatments have had any positive effect. I described my frustration in a blog post I wrote just a few weeks ago - Head Games. So what has changed? Why am I now ready to declare that intrathecal methotrexate is working?

In the past few days I revisited two posts that I’d written shortly before beginning this treatment regimen. The first one was a January 3, 2012 retrospective about all my losses and gains in 2011. Until I re-read this post I had forgotten what a rough year 2011 was for me, medically. In that same post I extrapolated into the future and made some rather dire predictions about losses that I might expect in 2012 and 2013 if my disease progression were to continue at the same pace. I’ve incurred none of those losses.

The other post that helped clarify the issue for me was this one – My Perfect Day. I looked at the success percentages for certain tasks like getting into and out of bed, for example, and these tasks are no more difficult now than they were in the past.

I am also taking into account my wife’s observations. Kim feels that she is providing me with no more assistance in my daily tasks of living than she did a year ago. I must admit that I agree with her. If you sum all of these things up, then what do you have? You have this:

Intrathecal methotrexate is working to significantly slow down my disease progression, and this is having a positive impact on my quality of life.

As is my nature, being a skeptic and a man of science, I must consider the possibility that I’m wrong. Hence the “At least I think it is” hedge at the top of this post. There are a couple of ways that I could be mistaken. Maybe there was some natural plateauing action that was going to happen with my disease progression even if I hadn’t had this treatment. I’ll never know. Maybe it’s the placebo effect or some similar psychological deception. Perhaps I am continuing to progress, but part of me refuses to acknowledge it. Kim would have to be under a similar spell. Better people than us have succumbed to wishful thinking when faced with circumstances like ours.

I also need to keep this all in perspective, even if intrathecal methotrexate is indeed doing what I think it is doing. First, just because I am plateauing now, doesn’t mean that my progression will not resume at some point, maybe as soon as tomorrow. Second, this treatment is not without some risks. At any time I could start suffering from mild or even serious side effects, maybe as soon as tomorrow. There’s not an abundance of patient history regarding long-term use of intrathecal methotrexate. Third, just because I may have slowed down or even stopped this particular variety of protracted, miserable wasting-away, at some point I might develop any of a million or so other horrible conditions like heart disease, Alzheimer’s, or cancer, maybe as soon as tomorrow. This is even more likely for me than a healthy person, because of the damage MS has already inflicted upon my body.

So I’m making no promises or even predictions about tomorrow. But for today, my life is better than it otherwise would have been without this treatment. If nothing else, I averted ten months of disease progression, and there is a reasonable likelihood that this could continue, at least for a little while, into the future.

This makes Mitch a very happy boy.



Note: To see all of my intrathecal methotrexate posts, click here. They are listed in reverse chronological order.
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