Thursday, October 29, 2009

What Would Mitch Do? or WWMD?

OK, here’s a quiz for you. Today I had an appointment that happened to be on the second floor of a medical building. Just as we were finishing up the therapy all the lights went out- I'm not sure why. But it was no big deal, since my appointment was over anyway, right? Then my therapist, Kristen, pointed out, "I bet the elevator isn't working. How are you going to get downstairs?"

Did I:
  1. Call the fire department to rescue me, much like you would with a cat stuck in a tree?
  2. Re-read the 18 month old magazines in the reception area, and just wait this thing out?
  3. Use the stair climbing mode of my wheelchair to simply descend the stairs and be on my way?
If you chose option 3 then you get a cookie. Just send me your address and I'll get that cookie on its way.  If you are an attractive woman, feel free to send me your phone number too.  What?  I have single friends that I'm looking out for.  Jeesh.

This was a particularly cool experience because it was the first time that I found myself stranded in a situation where my only option, other than doing nothing, was to use the stair climbing mode of my iBOT wheelchair. Sure, I’ve used the stair climbing mode many times before, but never because I was on an upper floor and the elevator had failed.

Since the elevators in this building were not working the stairwell was full of activity.  By the time I descended from the second floor to the first floor I had quite a group of people watching me (and waiting for me to get out of their damn way). It was really cool. I'm glad that the power went out. It kind of made my day.  

For more information about my iBOT wheelchair please watch the videos on the right-hand side of this webpage, or read a two-part posting I published this summer:

This is Not My Mother’s Wheelchair (Part 1)

This is Not My Mother’s Wheelchair (Part 2)

Sunday, October 25, 2009

On Telling My Story Through the Internet

Kancamagus 02 What am I doing here anyway?

This was not the plan. When I started my blog after leaving the workforce earlier this year, I did not intend to write what is essentially a piecemeal memoir. What I had envisioned was a much less eloquent version of my friend Marc’s blog- Wheelchair Kamikaze. Marc writes amazing essays mostly dealing with MS but sometimes completely off-topic. He’s a deep thinker, but writes in a reader friendly manner- a rare combination. My initial posts were written along these lines, and then I published my first memoir piece. I was immediately struck with the idea of writing a series of memoir posts about my MS journey.

I suppose my stories would be more riveting if I had some additional calamity in my life. If I had been an alcoholic, or drug addict, or an abused child; if I had been born with a disability, or if I was an emotional wreck, or if my wife left me; if I had become severely depressed and suicidal after my MS diagnosis; if any of this had happened then I’d have more material to work with. But other than my mother's accident when I was 5 years old and being diagnosed with MS when I was 38 years old my life has been pretty damn good, and “good” doesn’t make for interesting reading. I’m not complaining though. I’ll take a fortunate life over a lack of writing material every time.

I've posted 14 installments of my MS memoirs now, while sprinkling in some other essays, photos, and videos. The 14 “My MS Story” pieces cover the first four years of my journey with MS. Just last week I celebrated (celebrated?) the eight year anniversary of my diagnosis. It'll probably take me 10 or 15 more installments to finish up the memoir portion of my blog. I’m not sure what I’ll do when I’ve exhausted that material.
  
I find memoir relatively straightforward to write because I’m only required to do half the work. I don't have to conjure up innovative views about a particular subject, as I would if I was writing essays. I don’t have to dream up intricate plot lines and fascinating characters, as I would if I was writing fiction. I already have the material at my disposal. It’s in my memory. All I have to do is extract it and put it in writing. Nothing comes as easy to me as writing memoir. I wish more people would give it a try.

I sometimes ask myself what purpose I am serving with this blog. I don't have a clear answer, but here are some thoughts. For healthy readers my writing may answer questions about what life is like with a chronic, disabling disease, or provide some perspective that is otherwise difficult to obtain. For people with MS my writing may be helpful by reminding folks that they are not alone in this journey, and that it is possible to live a contented life as a disabled person. For other folks with MS, who are not in need of a psychological boost, it might simply be entertaining to read about someone else’s experiences with this damn disease. I’m sure there is also a group of readers who know me personally, have watched me deteriorate over the years, and simply appreciate some detail on how this all came to be.

My internal system of values and morals keeps whispering to me that writing about myself is immodest, and therefore inappropriate. Like so many of our basic instincts though, like fear of public speaking and claustrophobia, this one needs to be considered in the light of day. Is this the kind of instinct that saves me from making a grave error, or is this the kind of instinct that unnecessarily hinders my efforts to do the right thing? Now I wonder, if writing about myself is immodest, then how vain is writing about writing about myself? These inner voices- are they voices of reason or irrational fears?

Sometimes when I publish a new post I worry about my family and close friends. I spent a lot of time in the last eight years downplaying the effects of this disease. It's so much easier to tell your loved ones that things are going well than it is to delve into the gory details. So at times this blog has been a dose of reality for those closest to me. I’m revealing many issues here that I’ve never mentioned to anyone before, even to Kim. For these impersonal disclosures, I apologize.

I’m pausing, after 3 months and 23 posts, to ask myself if I’m on the right track. I'm a pretty logical guy. Typically when I have to decide if something has more of an upside than a downside I'll make a spreadsheet, list advantages and disadvantages, and sometimes even use quantitative analysis to reveal the answer. I just can't do that with this question though. For once in my life I’m going to decide something using my gut, not my brain. I'm going to keep writing just because it feels right.

I hope you'll keep reading.

Wednesday, October 21, 2009

My MS Story Chapter 14 - All in the Name of Science

Central nervous system
(Photo credit: Wikipedia)
In early 2005 my central nervous system was under attack. My own immune system had turned on it.

The antibodies in my blood stream were treating the insulation surrounding my nerves (called myelin) as if they were an invader, a foreign body. Because our immune systems are so adept at what they do, this type of identification error is a very bad thing indeed. Imagine for a minute that you are touring the mountainous regions of Eastern Afghanistan (don’t ask me why), and a group of Special Forces soldiers mistake you for an Al-Qaeda operative. You search for your identification papers but you can’t find them. The soldiers open fire.

That’s sort of what it’s like to have an autoimmune disease. We are victims of friendly fire.

Despite having tried drugs like Novantrone, Copaxone, Methotrexate, and something called Low Dose Naltrexone, my MS continued to progress. Even though I had maintained a positive attitude in the face of challenging circumstances, and even though countless faithful friends and relatives had mentioned me in their prayers, I kept getting worse. For almost a year I had not been on any type of medical treatment. I didn’t know what else to try. The disease was running its course unchallenged. My neurologist and I were scratching our heads (and we still are today).

We had tried the drugs that were supposed to work, at least for the more common type of MS. We had tried the drugs that were rumored to work, even though there was no reliable data to support them. Next, we would look for drugs that just might work. This search introduced me to the bizarre world of clinical trials.

I describe clinical trials as bizarre because what caring doctor would ask me to submit to a treatment where I don’t even know whether I am on the trial drug or a placebo? By what authority would a researcher withhold this critical information from even my own medical team? What taker of the Hippocratic Oath would dare ask me, a patient with a chronic disease, to endure permanent damage to my central nervous system for a period of years so that this damage could be measured and compared to that of other trial participants, all in the name of furthering science? In what alternate universe might I respond positively to the trial drug, yet it could be withheld from me at the end of the trial, so that scientists could study me as I come down off the drug? What mad men devised this draconian method of sorting through which drugs work for which diseases? I want names!

The following are my recommendations for improving the drug approval system…um, well, okay, I don’t actually have any great ideas off the top of my head. But that doesn’t mean the prevailing methodology is either reasonable or compassionate. I have no doubt that one day in the future medical science will regard today’s standard clinical trial protocol in the same vein that we now regard ancient medical practices like bloodletting or blaming illnesses on angry Gods.

Eventually my neurologist and I learned of a clinical trial for primary progressive multiple sclerosis (PPMS). This is rare, as almost all the MS trials limit their enrollment to patients with the more common relapsing remitting multiple sclerosis (RRMS). The purpose of the trial was to determine whether or not a certain cancer drug, called Rituxan, could slow down or stop the progression of PPMS. Since I had no other viable options at the time, I decided to apply for acceptance into this clinical trial.

There was only one obstacle. Clinical researchers need multiple windows into the trial patient’s body in order to study how the drug affects the patient. For MS trials, one of the most common windows is Magnetic Resonance Imaging. MRI machines image the lesions that show up in our central nervous system as a result of disease activity. Having an MRI scan is not painful or uncomfortable in any way, unless you are claustrophobic.

English: Osteoarthritis Initiative (OAI) resea...
(Photo credit: Wikipedia)
MRIs require that you to be stuffed into a “one size fits all” tube. For larger guys like me this means that your shoulders become squished inward, and the top of the tube appears only inches from the tip of your nose. There is some core part of my brain, the product of millions of years of evolution, whose function it is to never allow me to get physically stuck in a tight spot. This trait probably served my caveman ancestors very well, and is part of the reason that I am fortunate enough to exist at all. It's an irrational, base impulse. It doesn’t listen to reason. This instinct warns me “Just don't get stuck, and you may survive long enough to reproduce and pass this same wisdom on to your descendants,” or at least that’s how I imagine Darwin would explain it.

After my first couple of MRIs, way back when I was being diagnosed, I learned that whenever I got stuffed in that tube I need to take a valium first. The valium somehow suppresses my base survival instinct so that I can endure an MRI without having a panic attack.

When my doctor and I found the Rituxan trial, I obtained a list of all the hospitals in the country who were participating. Several of the hospitals were in the greater Boston area- only about two hours drive from my home. I called a special recruiting phone number at one of the hospitals and was connected with a disinterested clerk who began interviewing me. She asked what type of MS I had, how old I was, when I was diagnosed, what treatments I had tried, and so forth.

I'm an honest guy. Sometimes I should probably lie more, just to make life simpler, and the first clinical trial interview was one of those times. The questions continued…

"Mr. Sturgeon, do you have any issues with MRIs, such as claustrophobia?"

"Well, just a little bit, but it's no big deal. I'll be fine."

"Thank you for participating in this interview. Unfortunately, you are not a suitable candidate for the trial. Have a nice day.” Click.

It didn’t take a genius to figure out why my interview ended so abruptly. I went down the list until I found the name of the next hospital in the Boston area. This one was actually located in Worcester, Massachusetts. I gave them a call. I connected with a similarly impersonal clerk, and she was working from the same script. I answered all the preliminary questions, and then this one came up again.

"Mr. Sturgeon, do you have any issues with MRIs, such as claustrophobia?"

“Absolutely not.”

I was in.
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Thursday, October 15, 2009

My MS Story Chapter 13 – Tell me, do I remind you of Fred Astair, even a little?

Fred Astaire
Cover of Fred Astaire

  An excerpt from my journal:

    6/30/04  I got me a cane.  $31.50.

My scooter experiment in Washington, D.C. was a significant milestone, but it was a bit like going on vacation and pretending you're somebody that you're not.  None of those people would ever see me again.  It didn't really count. The real challenge would be unveiling my new cane to the people that I saw every day, or the people that I cared about the most.  This situation wasn't all that different from seventh grade when I had to walk into school one day with- I still shudder to think about it- my new glasses.

The first opportunity to take my cane on a trial run arrived the evening of July 4 when a small group of us attended the fireworks celebration in Portland, Maine.  A huge crowd was expected, so I knew we’d have to park a considerable distance from the optimum viewing area.  I'm not one to compromise when it comes to fireworks. Ever since I was a child I’ve always made it a priority to watch fireworks from the best possible vantage point.  On a related note I also like bonfires and thunderstorms, and I’m certain I’d be mesmerized if I ever saw a volcano erupt.

I garnered enough courage to attend the fireworks celebration using my cane, in full view of thousands of people- local people this time. I only bumped into one acquaintance, Kim's work associate Kate, and it was not awkward at all. I had passed the first test- unveiling the cane in public.  That, however, did not exactly open the floodgates. The cane remained safely tucked away at home for a while longer.  If I remember correctly, it took me several weeks to start wearing the glasses full time in seventh grade too.  In this regard forty-year-old Mitch hadn't matured all that much from thirteen-year-old Mitch.  But since practice makes perfect, today I absolutely kick ass when it comes to unveiling new assistive devices.

In August we had a weeklong reunion in Portland with about twenty close friends from out of town. I carried the cane for the entire week, traipsing about downtown Portland in broad daylight.  This was much bolder than my little jaunt at the fireworks celebration.  One day when we were all strolling down

Commercial Street 
I noticed a piece of trash paper lying on the sidewalk.  In one deft motion I plucked the paper from the ground with the tip of my cane and deposited it a dumpster, without even breaking stride.  My friends were impressed with my new super-powers.

Of all the groups that I would have to face for the first time with my cane, I felt the most trepidation about my coworkers.  Go figure.  Only about half the people at work knew that I had MS at all, even though I hadn't kept it a secret. I’d been disclosing it here and there, when I felt comfortable and when it seemed appropriate. I expected that the number of folks aware of my diagnosis would reach a critical mass, at which point everyone in the company would just magically know about it.  This was what I really wanted.  I was growing weary of all the one-on-one disclosures.  But it turned out that the people in my office had too damn much discretion and professionalism to gossip enough about me; so this critical mass never materialized.

In October an opportunity finally presented itself at work.  Our owner scheduled a weekend retreat for the entire company. There would be teambuilding activities requiring feats of strength and balance, etc. It was cane time.

All 60 or 70 of us took the train from Portland to the University of New Hampshire. I boarded with cane in hand. I'm sure everyone noticed.  How could they not? Some people politely acted like nothing unusual was happening. Some people asked me if I had injured myself.  Others looked at me with a knowing glance.  These were the people who deduced that my MS had progressed to the point where I needed a mobility aid.

I couldn't participate in many of the teambuilding activities, like the ropes course or the scavenger hunt in the woods, so I experienced two “firsts” that weekend.  I started using a mobility aid in the presence of my coworkers for the first time.  I also experienced something that I've faced so many times since- sitting on the sidelines, watching other people enjoy activities that I can't, with a smile on my face so as never to let on that it troubles me.  Despite the fact that I could not fully participate, this two-day company retreat turned out to be a liberating experience. My disability was finally out of the closet. I emerged from that weekend with the cane as my constant companion.

The last hurdle to overcome was revealing this mobility aid to my extended family- my parents and my brothers. They were aware of the seriousness of my diagnosis, and developments like this were not unexpected by them, but it was still a big deal.  Once again opportunity knocked, this time in the form of moose hunting- yes moose hunting. In Maine there is a lottery system for a limited number of moose permits, and after twenty years of trying I finally got one.  Karma?

I used the cane in front of everyone that week, and I shot a big bull Moose.  I was a happy camper.  I had my moose.  I had my mobility aid to make life easier, and I had full disclosure- no more secrets.  My identity was forever changed, and although there was some sadness associated with my disease progression, the principle emotion that I felt was relief.

I got a lot of miles out of that $31.50 purchase.  The cane sits in my garage now, having outlived its usefulness. Barring a medical miracle, I'll never employ it again.  Do I believe in miracles?  Not really...but I can't bring myself to part with that cane just yet.
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Friday, October 9, 2009

My MS Story Chapter 12 – A journey of a thousand miles begins with a single...scooter ride?

For those of us with Primary Progressive Multiple Sclerosis there are several major milestones that must be reached.  Some occur early, like diagnosis, various disclosures, and fooling yourself into thinking that one or more of the Relapsing Remitting MS drugs will help (that is almost a right of passage for PPMSers). For many of us, the next big milestone occurs when we become visibly disabled.  

In Maine, the school kids always get a weeklong vacation in April. We call it "April Vacation,” because it is a vacation that falls in April. If I’m moving too fast for any of you in this post, I encourage you to go back and re-read certain paragraphs before you continue.

My wife and I decided that in April of 2004 we would take the kids and spend a few days in Washington, D.C. None of us had ever done the tourist thing in D.C., so we were all very excited for the trip.

Washington, D.C. is considered a great walking city.  You can park your car in any spot near the National Mall, and spend several days taking in the sights without ever bothering with the car again- various Smithsonian museums, the White House, the Capitol, the Lincoln Memorial, etc. Of course if you're not a good walker, then that's a problem.
English: South façade of the White House, the ...
 (Photo credit: Wikipedia)

At this point in my disease progression I was having a lot of difficulty with longer walks. I was avoiding going to sporting events, shopping malls, or big-box stores. Nature hikes were out of the question.  My legs would get tired after only a couple hundred yards, feeling as wobbly as a healthy person’s legs would feel after having run to the point of complete exhaustion, and then a little further.  I knew that eventually I would have to employ some sort of mobility aid, but that is an extremely difficult step to take (pun intended), and I was putting it off as long as I could.

I decided that this mini vacation (during April Vacation) would be a great opportunity for me to try out a mobility aid in a non-threatening environment.  Nobody that I knew, other than my immediate family, would see me. I searched on the internet and found a company in D.C. that rented scooters.  I'm not talking about the cool, two-wheeled type of scooter that is almost like a small motorcycle.  I'm referring to the type of scooter that George Costanza used in that classic Seinfeld episode. 

http://www.youtube.com/watch?v=csuZHyW-iGI

Lincoln Memorial
(Photo credit: Wikipedia)
We spent two days in DC- one day in the mall area and one day at the municipal zoo. I used my rented scooter in both venues, learning a few things in the process.  First, I learned about curb cuts. You need to constantly search for these sidewalk transitions because it turns out that scooters don't go up over curbs very well at all.  I did confirm, however, that if you don't mind a major jolt to your system they will indeed go down over curbs. I also learned about stairs. It turns out if there are stairs between you and your destination the scooter can't climb them. You need to scour the building for a handicapped ramp or elevator. Sometimes the ramp or elevator is in an obvious and convenient location, but many times it can be an adventure to locate one.  These are issues that only a disabled person or an architect would ever care about.  Sometimes I wish more architects were disabled (or the kinder version...I wish more disabled people would become architects).

It’s not all bad.  I learned how being in a scooter can help with the long lines that form outside tourist attractions.  It turns out that you, and everyone that is with you, can often skip right by the hoards of parents and their snotty nosed kids- no waiting required. Best of all, everyone that you zip by in your scooter smiles at you politely, without a single complaint to the authority figures about how you just cut in line.  I suppose that this, as with handicapped parking placards, is one of the ways that society attempts to equalize the fates of its members- redistribution of happiness.
 
Perhaps most importantly I learned that if you are not stubborn, and you accept the benefits that come with a mobility aid, you can resume activities that had been avoided for a long time. Some folks in D.C. looked at me with pity for the fact that I needed assistance at all- the glass half empty viewpoint.  But from my perspective, as someone discovering the freedom that a mobility aid provided, the glass was definitely half full- at least half full.
      
Overall, I’d characterize my first scooter experience as a success. It would have been impossible for me to enjoy Washington, D.C. without it. However, I wasn't really coming out of the closet yet. This was a private rather than a public experiment. It gave me a chance to try out this technology in relative anonymity, dipping my toes in the water of the disabled world. Later in 2004 I would start using mobility aids at home, at work, and in my community. That was a much bigger deal.
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Friday, October 2, 2009

My MS Story Chapter 11 – I lost something in the frozen wilderness of Maine

Driving my snowmobile down a freshly-groomed trail on a cold, crisp morning is the closest experience I’ve ever had to flying. I don’t mean flying like a plane. I mean flying like a bird.

When a Northern Cardinal maneuvers through the air he leans into the corners to induce elegant and dramatic changes in direction, always in complete control. When conditions are perfect, a snowmobile cornering through a meandering trail with gentle elevation changes cuts a similar path.

When you are in that zone, crafting seamless turns at the maximum speed that just barely allows you to stay on your side of the trail, there is nothing like it. Puttering along at a slower pace and taking in the scenery is nice too, but it’s not such an intense experience. The best riding is at once sublime and exhilarating. It’s like reading poetry while hanging on the edge of a cliff…eating crème brûlée in a hurricane.

My friends and I owned the most powerful, high performance snowmobiles that money could buy. We rode all over Maine, and it was not unusual for us to cover 200 or 300 miles in a single day. Quite often we would string a couple of these rides together and spend the night at a hotel in some remote town in Northern Maine. We also went on more leisurely family or large group rides. Although we preferred the high speed stuff we could dial it up or dial it down. We just loved to be on snowmobiles. It was more than simply a pastime. It was a culture.

Mark and Marco were two of the most skilled riders I knew. The three of us planned what we hoped would be a memorable trip in late February of 2004, just a few months after I had started my new job.

We covered a respectable 270 miles that day, but for the first time MS affected my riding performance. Mark and Marco were well out in front of me the entire time and I was a physical wreck by the end of the day. I simply didn't have the leg strength to shift my weight from side to side on the seat in the way that you need to in order to maintain speed while cornering. I also didn’t have the leg strength to absorb the shock of going over moguls at a high rate of speed, and I had to slow down when the trail became bumpy. Slowing down was not in our flight plan. I left a little piece of who I was in the frozen wilderness of Maine that day, so in that sense it was indeed a memorable trip. This ride marked the beginning of my steady decline as a snowmobiler, which continued until I could no longer ride at all by 2008.

So how have I dealt with the loss of this great passion of mine? Well it’s not easy, but there were two mitigating factors at play. First, although I absolutely loved the adrenaline rush, the camaraderie, and the adventure of snowmobiling, when you rode you always ended up cold and tired, and deep down inside I'm a person who doesn't like to be cold and tired. If my favorite thing to do was to drive my snowmobile, then my next favorite thing to do was to not drive my snowmobile. For example, I would anxiously anticipate an upcoming ride for weeks, but if for whatever reason it was canceled then my reaction would typically be, "Oh well, now I can just take it easy this weekend anyway. That won't be so bad."

The second factor that has made it easier to accept this loss has to do with self preservation. Riding snowmobiles at a high rate of speed was like a drug for us. We were addicted to going fast even though we knew that we could be seriously injured or even killed. Now that I can’t snowmobile anymore I know with certainty I won't be dragged out of the woods on a stretcher with broken bones, or worse yet wrap myself around a tree and leave my wife husbandless and my children fatherless. The natural high that came with living on the edge always managed to muffle the little voice in my head telling me that I was being selfish and irresponsible. Although I rarely heeded that little voice, it did haunt me at times. It doesn’t haunt me anymore.

A person with MS, as a matter of survival, develops a thick skin when it comes to dealing with losses like this. I very much wish I could still snowmobile, but I can’t expend too much emotional energy lamenting this loss. I’ve accepted it, and I’m moving on. I may need that energy later.

There’s one story that perhaps best demonstrates our passion for the sport. My friend Mark, my wife Kim, and I were riding near Moosehead Lake sometime in the late 1990’s. Kim was the best female rider I ever saw. She could keep up with the boys, no problem. The three of us were making our way through a relatively slow, wooded area - a section with such tight corners that we could only go 25 or 30 miles per hour. This was pretty low speed, leisurely stuff for us. No adrenalin rush here.

We turned a corner and noticed a group of riders pulled off to the side of the trail up ahead, and one of the snowmobiles was tipped on its side. A member of that group walked up to us. I asked him if everybody was okay, never anticipating the response that I got.

“No. That guy over there is dead. His son is with him. He just missed the turn and hit that tree head-on. He was wearing a helmet, but it didn't make any difference.”

When we determined that there was nothing more we could do to help, we made our way past the dead guy and his son. Kokadjo Trading Post was only a mile down the trail, so we decided to stop there and collect ourselves. The three of us ordered breakfast and tried to talk through what we had just seen. We didn’t want to end up like that guy. We were shaken. The mood was somber.

Given what we had just been through, when we resumed our ride we did so a bit more cautiously than usual. After maybe 5 minutes of riding we came upon a flat, wide-open stretch of trail where we would typically run our snowmobiles up to their maximum speed and really get the adrenaline flowing, sometimes hitting 100 mph or more. It was a beautiful, sunny day. Riding conditions were perfect. Life is short. Fuck it. We opened up our snowmobiles just like we always did and never looked back. That's how passionate we were about snowmobiling. Our first-hand encounter with death on the trails had tempered our aggressive riding style for a grand total of 5 minutes.


A few more snowmobiling pics of mine (click to enlarge):