There are so many talented people in the MS population, and I’ve been lucky enough to get to know a few of them. There are poets, writers, photographers, artists, and video producers, just to name a few.

Today I want to tell you about one such person with MS – Kate Milliken. If you’d like to see an example of her style of work, please visit katescounterpane.com, which is a video chronicle of her first year after receiving an MS diagnosis.

Kate is undertaking another video project to link together people in a completely new way, and those of us with MS can be contributors. To learn more, click here. Once the new venture is up and running, probably this year, please check back and consider sharing your own MS experiences. I plan to.

In the meantime, productions like this have significant costs, and Kate could use our help in funding her project. 

Keep up the good work, Kate, and thanks for using your talents to make life a little better for people with MS.

(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.

(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.

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.

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, 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!

The 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.

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.

(Photo credit: rob.knight)

Drinking the Kool-Aid has become a metaphor of blind faith, or being committed to an idea without justification. The term references the November 1978 mass suicide, when 912 followers of the Reverend Jim Jones drank a Kool-Aid type beverage laced with cyanide.

Brand loyalty is one common manifestation of Drinking the Kool-Aid. This occurs when people mindlessly commit themselves to buying products only from their favorite companies, year after year, whether or not these products represent the best available options in the marketplace.

Question- what is perhaps the most well-known brand in existence today?

Apple.

I’ve never owned an Apple product before. This is partly because each time I’ve evaluated them against the alternatives I’ve never been able to justify the added costs. But this is also partially because I’ve always been turned off by the culture of unadulterated love and devotion for this company that Apple users embrace. I’ve always preferred to purchase computer and cell phone products where the software is not inextricably tied up with the hardware. For example, I might buy a Dell or Hewlett-Packard laptop computer, with an operating system made by Microsoft, and use Skype for videoconferencing and Google for emailing. I prefer to select my ingredients from a broad menu rather than having a plate brought to me already prepared, no matter how inviting the cuisine.

At least that was the case until Friday.

It all began on October 23rd when Apple announced their new iPad Mini. There were two problems though. First, the so-called experts had predicted that the price would be about $250, but it turned out to be $330. Ouch. As a comparison, about six weeks earlier I had paid $199 for a Kindle Fire HD, a competitive product. Second, I didn’t like the idea of ending my lifetime boycott of Apple. But it was time to be a big boy. If the Apple product was the best option for the money, then I couldn’t allow brand disdain (the opposite of brand loyalty) to cloud my decision-making.

The iPad Mini was due to be released on Friday, November 2. Kim dropped me off on her way to school that morning. I was in the mall by 6:45. There were 13 people in line at the Apple Store in front of me. Not bad. This being my first Apple launch experience, I hadn’t known whether to expect 3 people or 100 people. There were also 5 or 6 blue-shirted Apple employees outside the store, and a horde of employees inside the store.

For the next 70 minutes I chit-chatted a little with other customers and the Apple employees. But mostly, I tried to play it cool and keep to myself. I didn’t want these Apple lovers to think I was one of them. I was just buying from Apple because I thought it was the product best suited for me, not because I was drinking any Kool-Aid.

I was in balance mode in my iBot the entire time, so I was happy to draw some of the “Oh my God, isn’t technology amazing” attention my way. I had one of the employees take my picture for this blog post. He told me he would also take a shot of me with my new iPad when I came out of the store.

At about five minutes of eight, the Apple employees went into full launch mode, which means they insisted on making this a festive occasion, much to my dismay. They got the crowd of customers, which was about 25 people by this time, whipped into a frenzy as if we were about to have gifts of riches bestowed upon us.

At precisely 8:00 the doors opened, and all the employees ran laps around us, giving and receiving high-fives. I allowed myself to leak a polite smile, but that was all. Then they started matching up customers with employees, and by 8:07 I was in the store with Chris. A couple of minutes later I had my iPad Mini. One aspect of the purchase experience that I absolutely loved was this question from Chris: “Would you like the receipt emailed to you, printed out for you, or both?” I took the first option.

I spent a few minutes with one of the technicians having him set up the unit for me. During that time, employees kept walking by and congratulating me, again, as if I had won some prize or accomplished a remarkable feat.

When I emerged from the store the employees who were stationed outside gave me a big ovation, and the gentleman who took my picture earlier insisted that he take another one, this time with the iPad Mini in my hands. It was all too cult-like for me. I had to get out! I brusquely told them “no thanks” and zipped down the hallway to catch my bus home.

What became of my Amazon Kindle Fire HD that I purchased six weeks earlier? I returned it for a refund. That hurt a little, as I’ve been a rather enthusiastic, and even loyal, Kindle user for years now. But I’ll still keep my original Kindle, because it works better in direct sunlight then any of the higher end e-readers. And I’ll keep purchasing my books through Amazon using the Kindle reader app on my iPad.

So how is the iPad Mini working out for me? I absolutely love it. It has an extensive array of accessibility features for different types of disabilities. And bottom line – it is an e-reader, but also a powerful and well-connected computer that fits in the pouch of my wheelchair. Well done Apple. Now please don’t roll out the iPad Mini II for at least a year.

My cell phone contract is up in March of 2013. Time for an iPhone?

Pass the Kool-Aid, please.

A cacophony of disastrous events has recently plagued Maine. The only reasonable explanation is that Armageddon is upon us- the End Times. Prepare for final judgment.

Or not.

Yesterday and early this morning we endured Hurricane Sandy, a.k.a The Storm of the Century. I live on the south coast of Maine, where I can see the ocean at the end of the street, about 100 feet from our house. My little corner of the Atlantic, however, is but a small cove in a protected harbor in a larger bay guarded by many islands. So it’s not like I expected the waves to be splashing up on my back deck.

The wind and rain started to increase beyond reasonable levels after noontime yesterday. The storm intensity steadily increased until about midnight, with gusts over 60 mph. The rain came in bands. Sometimes nothing was falling from the sky. Other times it felt like our house was being power washed by a thousand hoses at once.

Kim and I take great pride in our hearty, New England fortitude, particularly when it comes to weather. We don’t buy into the incessant hype in the days leading up to a storm. We play it cool, scoffing at Kim’s mother and our daughter (two separate people) who suffer from an innate fear of Mother Nature’s fury. Having said this, the storm was so fierce at times last night that Kim and I would spontaneously make eye contact, raise our eyebrows as high as humanly possible, and utter something along the lines of, “Holy crap!”

Unlike millions of people on the East Coast, we never lost power for even a second. My internet connection performed without interruption. In fact, the reception on my DirecTV dish never even blinked (which makes no sense to me because I’ve lost it temporarily in much milder storms).

We have some trees on our property that we feared could suffer damage, but there were almost no branches on the ground this morning. Many of the remaining leaves on the trees came down, but that’s all. Because of the powerful and unidirectional winds, our lawn appears as if somebody raked all the leaves for us into a couple of neat piles along one side of our house, ready to be picked up and disposed of. Kim is pleased.

When we woke up this morning the fury was over. It was a bit breezy outside, but not raining. Throughout today we had intermittent showers, although around noontime the temperature was up to 65°, and the sun was shining. I took my wheelchair around the neighborhood to assess the broader situation. Just like in my yard, there was almost no damage – just a bunch of leaves and a few branches down. As I zipped around the neighborhood I enjoyed the tropical air that Sandy brought us, which is a very rare treat at this time of year in Maine.

For our community, the storm of the century was no big deal, and is completely behind us now.

Disclaimer: in no way do I mean to imply that this was not a significant storm that caused distress to a great number of people. I’m just referring to my experience with Sandy.

In the introduction to this post I mentioned that there had been a cacophony of events, so I suppose I am obligated to bring up at least one other. On October 16, Maine experienced a rare earthquake. It was about 20 miles from my house and registered at 4.0 on the Richter scale. I’ve experienced a few minor earthquakes in Maine over the years. Unfortunately, I only felt this earthquake in retrospect. I was by myself in the house and heard what sounded like an unbalanced load in our clothes washing machine. After about 10 seconds the sound went away, like it often does, and I gave it no more thought.

About 5 minutes later my daughter texted me and asked if I had felt the earthquake. Our brains work in strange ways. I didn’t consciously run through the events and deliberately put all the pieces together. My brain subconsciously and instantaneously realized that this wasn’t laundry day, and that the noise I had heard from the washing machine was the earthquake. Damn! I so wish that I had realized what was happening while it was happening. That would’ve been much more enjoyable.

Enjoyable, you say? I have to admit, I get a charge out of these little natural disasters and “storms of the century” that we get in Maine. They break up the monotony and make life a little more interesting. Thunderstorms – love those too. The bigger the better.

I guess I also get a kick out of saying, after the mess is all cleaned up, “Mother Nature, is that the best you’ve got?” Being a man of science, I don’t fear jinxes or angry weather gods or any other superstitions.

Come to think of it, now that I’m feeling all cocky and badass, why not take this to the next level and say, “Hey, MS, is that the best you’ve got?”

In the end, Mother Nature or MS may do me in. But I’m not going to give either of them the satisfaction of seeing me sweat.