Wednesday, January 30, 2013

What Do I Do All Day? I Watch (mostly) Quality Television

102300_wb_0007b_0This is the first in a series of posts about how a disabled person like me passes the time at home, now that I no longer work.

Television is roundly criticized as a colossal waste of time. Granted, there’s a lot of crap on television that deserves to be ridiculed, but I’m here to tell you that there is a lot of quality television available as well. You just have to do some legwork (sample a lot of awful shows) to find the gems.

There are two basic categories of shows – network television and cable television. In general, the drama and comedy series on cable, such as those on HBO or Showtime, are superior to those on network television, such as ABC or Fox. But the seasons are relatively short for the cable shows. A typical run will be 12 consecutive, weekly shows, which are completed in three months. Most network shows spread 20 – 25 episodes out over approximately eight months.

Believe it or not (for those who know me, this is sarcasm), I keep a spreadsheet of the cable television shows I watch, how many seasons have been completed, and when or if the next season will begin. I don’t know why I make so many spreadsheets. You may as well ask me why I breathe so often.

Kim doesn’t care for television. She has only a few shows that she watches during the week, and I watch those with her. Other than that, I tend to record most of the programs that I’m interested in and watch them the next day while Kim is at work, rather than watching them live in the evening while ignoring Kim. Also, by viewing recorded shows I’m able to fast-forward through the commercials. This is particularly important during a political season, which seems to be most of the time these days.

Here is a list of the TV series that I watch on cable. I have rated each show on a scale of 1 to 10 for overall quality.

HBO
Showtime
Miscellaneous Cable Shows
Here are some network shows, of the comedy and drama variety, which I watch. I’m going to rate them on a different scale than the cable shows, because it’s a little bit of an apples and oranges situation.
Here are some other shows that I watch from time to time:
th No apologies. This is what I watch, for better or worse. I don’t do cop or detective shows. They just don’t hold my interest. The only reality shows I watch are the occasional singing competitions. Notice that there are no History Channel or Discovery Channel, etc., shows in my list. Are there any that I should be watching?

I watch a lot more TV during the winter. In the summer, Kim is off for about eight weeks, and there are so many more options for passing the time in the real world. Even in the spring and fall when I can get outdoors by myself during the day, the television sits idle for long periods of time. But in the winter, if not for television I am certain that I would go stir crazy.

If television were my only answer to the question “What Do I Do All Day?”, then I would have a problem. But that’s far from reality, as you will see in my subsequent posts on this topic. To a certain extent TV educates me and makes me a more informed and well-rounded person. But primarily it just makes me happy, and isn’t that what entertainment is for. 

I look forward to your comments about specific shows, and about television watching in general.

Here are my other posts in this series:

2. I Digitize and Archive Family Photos and Videos
3. I Read Books
4. I Attend Courses at Top Universities (sort of)
5. I Nap
6. I Blog
7. I Read Other People's Blogs

Tuesday, January 29, 2013

What Do I Do All Day?

2007 182 Phoebe 03 In just a few months I will reach the four year anniversary of my disability retirement. People often ask me what it is I do all day while Kim is at work.

Where do I begin?

I am blessed with a curious mind, and some tools with which to exercise it. Throughout the day I rotate my attention between my LED-LCD TV, my iPad Mini, and my laptop computer. In good weather, which I haven’t seen for a few months, I also get outside and enjoy my wonderful neighborhood while Kim busts her ass trying to mold the minds of middle school children.

I also take my share of time for rest and relaxation. My wheelchair reclines so that I can make myself comfortable for a nap on very short notice. At times, I lament the fact that I am no longer a productive member of society in the traditional sense, but nevertheless I still find my life to be meaningful and, to a large extent, enjoyable.

Although I have a wide variety of interests which I pursue during the day, I do a pretty good job of not pressuring myself into getting anything in particular accomplished unless absolutely necessary. For a healthy person, this would not be an admirable trait. For a person with a chronic, disabling disease, which stress only exacerbates, it’s a wonderful thing.

My most demanding obligation is usually publishing a weekly blog post.

So I will begin a series of posts over the next year or so, sprinkled among posts on other subjects, where I describe what it is that I do to pass the time while Kim is at work. I’ll try not to bore you with minutia.

The first such post will be tomorrow, if I get around to it.

I know. You’re all jealous. Not everyone can lead as exciting a life as I do!

Tuesday, January 22, 2013

Everything Is Not Coming up Roses

Coming Up Roses
(Photo credit: Jennuine Captures)
A recent article at everydayhealth.com had this headline:
10 Facts You Should Know About Multiple Sclerosis
Multiple sclerosis is now a treatable disease. Get the facts about MS, and find out why MS experts are upbeat about this common neurological disorder.
This just makes me mad!

For the average healthy person reading this article, as well as many patients who have the relapsing remitting type of MS, this is welcomed good news. But for those of us who are having our asses kicked by MS, this type of article does us a disservice.

It’s acceptable, and perhaps even admirable, to acknowledge the gains that have been made in MS treatment. 20 years ago there were no treatments. 10 years ago there were only three treatments. Today there are many choices of disease modifying drugs, and we are finally seeing oral treatments that do not require a shot or an IV. Yes, there has been some progress.

However, there are several factors supporting my position that our advancements in the field of MS treatment are woefully lacking. Although these disease modifying treatments tend to reduce the number of relapses, there is scant evidence that they provide reduced disability in the long term. Many patients see no benefit, or only temporary benefit, from these treatments. They are expensive – $50,000 per year is typical. They carry with them considerable and potentially serious side effects.

And here is my primary point. These drugs only work for, and are only approved for, the most common type of MS – relapsing remitting MS. They don’t work for secondary progressive or primary progressive patients, and we’re the ones who experience the most severe effects from MS.

MS drugs aren’t unique. This “treat the disease with highly profitable drugs, but don’t cure it” phenomenon occurs with all sorts of diseases. For a rather hard-hitting essay on our dysfunctional medical-industrial complex, read this Wheelchair Kamikaze blog post.

I’m not trying to rain on anyone’s parade. I don’t mind these types of articles, if only they took the time to acknowledge that so many of us still suffer terribly from MS, and we see little or no hope for improvements in our lifetimes. I am acquainted with many MS patients who struggle to get through each day. I even know several MS patients who expect to die from complications of the disease in the next few years. The picture is not rosy, as much as we would like it to be.

Note to journalists and doctors moonlighting as journalists: stop saying things like “this is a great time to have MS” or “multiple sclerosis is now a treatable disease” without qualifying your statements by acknowledging the significant number of us who are not benefiting at all from current, approved treatments. You are being thoughtless and cruel when you make these statements, although in most cases I don’t think you even realize it.

Before I get off my soapbox, I’ll point out that later in the above referenced article the physician-author makes several atrocious statements. First, she says that 85% of patients have the relapsing remitting form of MS. This is a basic mis-statement of an elementary statistical fact. Approximately 85% of patients are initially diagnosed with relapsing remitting MS, but more than half of those patients will eventually develop secondary progressive MS (which is not treatable). She also refers to progressive MS as “rare,” essentially dismissing us as the irrelevant fringe of the MS world. We don’t like that characterization, and it is not accurate.

So whenever you encounter the “good news” about MS, be skeptical. Remember those who have been left behind.


Note: Yes, I recently announced that I seem to be benefiting from an experimental treatment called intrathecal methotrexate. However, this drug is not FDA approved for multiple sclerosis. It has not been through double-blind, placebo-controlled studies to verify its efficacy. It’s apparently working for me right now, and for that I am extremely grateful. However, I live in fear every day that it’ll just stop working, because we simply don’t know enough about how this treatment affects multiple sclerosis.
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Wednesday, January 16, 2013

I Ain’t Right in the Head

1/365 [dazed & confused]
(Photo credit: PhotoJonny)
Multiple sclerosis is a disease of the central nervous system (CNS). The CNS consists of the brain and spinal cord. Something happens - nobody knows exactly what - which causes the axons (nerves) to be attacked by the immune system or in some other way degenerate over time. This can’t be good for my CNS. And since the CNS is kinda important to the rest of my body, it can’t be good for me.

Does the fact that some of these lesions are in my brain, not only in my spine, mean that I have a mental disorder? Well, MS is not typically recognized as such, but why not? It manifests itself as a combination of physical and mental/emotional symptoms, but it’s only the physical ones that are commonly discussed.

I think I’d like to be labeled as having a mental disorder. In Maine, we often describe people with mental disorders by saying, “He ain’t right in the head.” Such individuals are handled with kid gloves, and are granted significant leeway to commit all manner of social faux pas, without consequences.

If we can agree that I ain’t right in the head, then I should be allowed to do the following (hint, I already do):
  • Say precisely what I feel, no matter the social norms that I may violate or the feelings that I may hurt.
  • Dress myself in any manner which I deem comfortable, even if that means sweatpants and slippers at a nice restaurant.
  • Occasionally forsake personal care such as shaving, washing, combing, or getting the gunk out of the corner of my eye.
  • Tell the same stories over, and over, and over again (you should never point this out to me, and you must react as if this is the first time you’ve heard the story). This also applies to blog posts.
  • Conveniently forget commitments that I’ve made.
  • Categorically deny having ever made certain incorrect statements.
  • Inexplicably forget your name, even if we go way back.
  • Make you wait while I interact with my artificial memory (smart phone, iPad, and laptop) to supplement my damaged biological memory.
  • Start speaking about a complex and important issue with apparent intelligence and gusto, only to lose my train of thought and my enthusiasm mid-speech.
Don’t be mislead by my occasional wittiness and clarity here at this blog. On average, it takes me 17.25 revisions before I dare publish something. I definitely ain’t right in the head.

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Tuesday, January 8, 2013

Deep Sea Diving in a Wheelchair

images

Sue Austin describes her artistic wheelchair diving this way:

“It is the most amazing experience, beyond most other things I've experienced in life. I literally have the freedom to move in 360 degrees of space and an ecstatic experience of joy and freedom.”

This woman's indelible spirit is inspirational to both wheelchair users and walkers alike. Please watch her TED video, which includes breathtaking underwater footage (pun intended). I guarantee it will brighten your day.

Wednesday, January 2, 2013

Losses and Gains 2012

Cover of "A Good Year (Widescreen Edition...

Given that we have now ushered in 2013, this seems an appropriate time to render an honest assessment of what I’ve gained and lost in the past year, and what changes may await me in the coming year.

2012 Negatives
  • Started having mini panic attacks
  • Two painful experiences with lumbar punctures
2012 Positives
2013 Potential Losses (if my disease progression resumes these may be the things that I lose next)
  • Ability to operate zippers (already very difficult)
  • The rest of my personal grooming tasks
  • Ability to sign my own name (that’s all I currently do for handwriting)
  • Sitting up in bed, unassisted
  • Transferring to and from my wheelchair, unassisted
  • Feeding myself
  • A few things that I can’t even imagine (the devil I don’t know)
2013 Potential Gains
  • Another year of negligible disease progression (fingers crossed)
  • Saving the iBot (Dec 31, 2013 is our “mobility cliff”)
  • Trip to Jamaica (expect posts in March)
  • Still more new friends (despite my lack of social skills, they keep coming)
  • Entire summer in new, more walkable neighborhood
  • A few things that I can’t even imagine (P. F. Chang’s opens a restaurant in my neighborhood?)
  • Another year above ground
images This 2012 assessment is much more upbeat than my 2011 assessment. That was a rough year for me, and so I was naturally pessimistic about 2012. But things have turned around, at least for the moment. By no means am I assuming that my disease stabilization will continue, but it’s a bit like winning a sports championship – nobody can take it away from me. My 2012 MS Success trophy now sits prominently on my mantle, to the left of the trophy for Stuffed an Entire Peanut Butter Sandwich in My Mouth that I won in 7th grade, and to the right of the trophy for Made a Move on the Freshman Girl with the Nice Ass and Playful Personality that I won in 10th grade.

Nobody can ever take these accomplishments away from me.
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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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Tuesday, November 27, 2012

Standing As Therapy

imagesThe human body is not designed for prolonged sitting. Office workers and truck drivers know what I mean. But at least they are able to stand up and move around before and after work and during breaks. Not so much with us wheelchair users.

Besides looking up at the world all day, which is bad enough, it turns out that sitting wreaks havoc on our bodies. This is in addition to the havoc being wreaked on us by whatever prevents our standing in the first place. Cruel irony. The list includes problems with joints, spinal alignment, respiration, digestion, spasticity, skin sores, and much more.

I recently met a new MS friend, Darcy, who lives just down the street. She is a wonderful lady whose disease course is quite similar to mine. I stopped over to visit with her a couple of weeks ago. As is typical with disabled people that I meet, we compared notes to see what we could learn from one another. Darcy and her husband have acquired some cool adaptive equipment. One item is an EasyStand 5000, pictured to the right. This is a type of device called a standing frame, which allows disabled individuals to elevate themselves to an upright position for some period of time. I like to refer to this as therapeutic standing.

Here’s a link that describes some of the health benefits of assisted, therapeutic standing.

These units cost upwards of $2500 new – a serious amount of cash. But Darcy’s husband obtained most of her disability equipment from Craigslist.com. Inspired by him, I logged on and found a slightly used EasyStand 5000, about two hours away, for only $600. Kim and I drove to New Hampshire and picked it up. In doing so, we met a very nice disabled man and his wife. Of course, I compared notes with the gentleman in the wheelchair, but Kim compared at least as many notes with his wife – notes about how to take care of occasionally stubborn, but strikingly handsome men in wheelchairs.

Below is a demonstration of how the standing frame works. There is a lever arm that I operate with my right hand in order to raise the seat up. At first, I didn’t think I would have enough strength. However, I learned that if I make very small movements with the lever arm I can ever so slowly raise myself up. Kim could do it twice as quickly for me, but I like accomplishing this myself.

a_5000

There is a tray where I can place items to keep me entertained while I am in the standing frame. This is critical. As is the case with any piece of exercise equipment (which is essentially what this device is for me), the most likely outcome is that I’ll use it faithfully for a few weeks or months, then use it sporadically for a few more weeks or months, then I’ll put it on craigslist and brag to everyone if I’m able to get a better price than I paid for it. I don’t want that to happen.

Here’s a picture of me in full relaxation mode in my EasyStand 5000. I have everything I need: remote controls for all of my A/V devices, my iPad mini, and a glass of Pinot Noir. I’m up to 25 minutes and one glass of wine per standing session now. My goal is to stand up long enough to get drunk enough that I can’t stand up anymore.

I sense there is a flaw in my plan, but I can’t quite put my finger on it.