Wheelchair Kamikaze: Marc discusses Life in NYC, Progressive MS, Relationships, and CCSVI (Part One)
Connecting with other patients is a very special feature of the blogosphere. We share so much of our lives in telling our stories. We often discuss disease, health, and how MS affects each of us in a unique way. As is often said, no two of us are exactly the same.
Marc, welcome to MS HealthCentral. Please tell us a little bit about your MS diagnosis. Had you had symptoms for years before seeing the doctor? What were your early symptoms?
Well, Lisa, first let me thank you for inviting me to take part in this series of conversations. I was first diagnosed in the spring of 2003, after I noticed a slight limp in my right leg during a long walk along the Hudson River here in New York City with my best furry friend Stella, a yellow Labrador retriever. I didn't think much of it, but as the days and weeks passed, it only grew worse, and I started feeling weakness in my right arm as well. Looking back, I definitely had symptoms long before that limp finally showed itself. In the summer of 1995 my left thigh became numb, which I attributed to a little fender bender I had been in a month or so earlier. I didn't even bother to get it checked out by the doctor, but the numbness never went away. In 1997 I started getting these strange little lesions on my face, and the doctors thought it might be discoid lupus, a form of lupus that primarily affects the skin. They were never able to nail down that diagnosis though, and after a few years things calmed down. Still, in retrospect I can see that I was really not feeling well for many years before I was ultimately diagnosed with primary progressive multiple sclerosis. I just had a sense that something was wrong, a general feeling of something being not quite right. I really didn't know what to make of it, and chalked it up to depression or anxiety, both of which I'd battled most of my life. But now I understand my problems were mainly physical, not psychological.
How long did it take before you were diagnosed with primary progressive MS (PPMS) instead of the more common form of relapsing remitting MS (RRMS)? Who made that determination, you or your doctor?
I think the doctor that diagnosed me suspected PPMS right off the bat, based on my age (39 years old), the fact that I was male, and the nature of my symptoms. My MRIs also only showed one big lesion at the very base of my brainstem, which is not what one usually sees with MS. Still, he started me on Rebif, on the off chance that it might help me. As I researched the disease online, it didn't take me long to figure out that I most likely had primary progressive MS, and that there was no remedy for that form of Multiple Sclerosis. After my second or third visit to this neuro, who is no longer my neuro for a variety of reasons, I brought up the subject of PPMS, and he agreed that this was the most likely diagnosis.
Over the years, have you or anyone questioned your MS diagnosis? Have there been any alternatives offered by medical professionals?
I questioned my diagnosis almost from the day it was given to me. There were a lot of aspects to my disease that just didn't make sense, and still don't. First of all, there was that episode of suspected discoid lupus way back in 1997. That didn't just come from nowhere, and I still feel that mysterious episode, which has never been explained, definitely plays, or played, some role in my disease development. I also have a lot of strange endocrine issues, and as I said before, my MRIs have always only shown one big, significant lesion at the base of my brainstem. There's also another much smaller one in my brain, but every Dr. who's ever examined my images says that it is totally inconsequential. The big brainstem lesion has never changed in size or shape in the 7 1/2 years since my diagnosis. I even had some MRIs that were taken two years prior to my diagnosis, when it was thought I might have some pituitary problem due to the above-mentioned endocrine issues, that upon later inspection show the same lesion. My lumbar punctures have also never revealed any O-bands, which is again very unusual for MS patients.
I vigorously pursued a differential diagnosis very early on, getting second and third opinions, all of which concluded that I probably had a very atypical form of PPMS. My question always was, how atypical does a disease need to be before it's no longer that disease? I saw several doctors here in New York City and finally went down to Johns Hopkins in Baltimore to be seen by Dr. Peter Calabresi, one of the foremost MS neurologists in the country. I should also mention that my primary neurologist, Dr. Saud Sadiq, is also a highly respected and very well known physician in his own right, a world-class clinician and researcher.
Dr. Calabresi initially put me through a long battery of tests, and eventually came to the same conclusion that the other doctors had reached: a very atypical case of PPMS. I kept in touch with Dr. Calabresi for several years via e-mail, and after sending him some of my latest MRI images, he asked if I would come back down to Baltimore because things were just not making sense. My MRIs were absolutely stable, but my condition continued to spiral downward. After my second visit to Johns Hopkins, Dr. Calabresi decided that what I had was most likely not MS, but he couldn't suggest another diagnosis and recommended that I visit the Mayo Clinic. Soon after this, I saw something in one of the MS magazines about the fact that the National Institutes of Health was conducting a study of MS patients, attempting to find subjects with clinicallydefinite multiple sclerosis for use in their other MS trials. It turns out that MS is so oftenmisdiagnosed that many of their trial results were being painted by subjects who werenot actually suffering from the disease, but from one of its mimics. As part of this NIH trial, I traveled to Bethesda Maryland a handful of times for various tests and examinations. The facilities down there are top-notch, as are the brilliant physicians. Eventually the NIH team also concluded that I most likely don't have MS, but they too have been unable to come up with a suitable alternative diagnosis so far. Meanwhile, my primary neuro, Dr. Sadiq, still thinks I might be suffering from an atypical form of PPMS, especially since my symptom profile does not fit any of the other likely culprits. We've agreed to continue to label my disease PPMS, only in my case the letters stand for the Peculiar Paralysis of Marc Stecker...
LOL. Many questions often come in on HealthCentral regarding the decision to retire early. Was it a difficult decision for you at the time you went on long-term disability? What were the contributing factors to making that decision? Did MS play a part, and if yes, how so?
The decision to go on disability is fairly difficult, but I didn't seem to struggle with it is much as some people do. I was the Director of DVD Production for one of the major international entertainment conglomerates, and although successful, I had long ago lost any passion I had for the job. I got very lucky in that while I was working for this entertainment industry giant, it merged with another entertainment industry giant, and the merger created a new company, giving all employees the opportunity to reconfigure their benefits packages as if they were new employees. I had already been diagnosed with MS, so I maxed out on long-term disability insurance, as well as all of the other health-related options that were offered, such as long-term care insurance. Towards the end of 2006, rumors started circulating that the facility that I worked in was going to beshut down, which meant that I stood a good chance of losing my job, and along with it all of those much needed benefits. After consulting with my doctors and my bosses, we decided that it would be in my best interest to go out on disability sooner rather than later, as my physical condition had deteriorated to the point where I would have been forced to retire within several months anyway. Even though my job was primarily a desk job, it was becoming increasingly difficult for me to get back and forth from work, and to travel around town for meetings and such. Unlike some of the other horror stories I've heard, my company went out of its way to make things easier on me as my diseaseprogressed. It didn't hurt that the department I ran was hugely profitable.
So, in a way, because of the impending shutdown of my facility, the decision was made for me. If I had to, I probably could have eeked out several more months on the workforce, but things really were getting quite difficult to handle. I pretty much slept through my first week on disability, I was so exhausted from simply working. Ididn't even realize how exhausted I was until I actually stopped working and was able to stepback and take a breath.
Marc, you are known as "the Wheelchair Kamikaze." How would you describe the relationship you have with your wheelchair? Have you been able to dothings you might not otherwise be able to with the use of your chair?
Well, I'd say me and my wheelchair are very good friends. Like most people facing the prospect of getting a wheelchair, I was very wary of the whole proposition at first. I really resisted the whole idea for a while, but all the time my world was shrinking. I was able to walk less and less, but living in New York City, as long as you can get to a corner, you can always hail a cab. Unfortunately, my disease was progressing to the point where I couldn't even get to the corner. I had to undergo a long-running battle with my insurance company to get the wheelchair that I thought was right for me, because they had approved a wheelchair more suited for indoor and suburban use, whereas living in the city presents challenges best tackled by a more rugged machine. There are huge avenues to cross, the pavement is often in terrible shape, and numerous construction sites create some very haphazard pedestrian walkways. Also, I really wanted a chair that goes fast. I made the argument to the insurance company that this was because of the hazards of city living, but in reality I'm just a guy who always owned sports cars, and the thought of being stuck in a little putt putt chair was unacceptable. I finally got the insurance company to pay for a rugged chair with a high-speed package installed, so that I can go about 8.5 m/h, almost 3 times typical walking speed. The speed has actually turned out to be very handy, and I can get around the city much faster than most of my fellow New Yorkers, even if they hop on a bus.
One of the unexpected benefits I received after getting the chair was the ability to resume my hobby of taking photos and making videos. Actually, making videos was my profession, and people really seem to enjoy the videos I've made of my jaunts through New York City in the wheelchair, to which I add what I hope is some witty and informative commentary. Since MS robbed me of the use of my right arm, I was unable to hold and operate a camera within a few years of my diagnosis. This was a considerable loss, since I had a real passion for photography, and was quite the avid shutterbug before I got sick. Though my wife suggested that I try to mount a camera to the wheelchair so that I could resume my hobby, I resisted that, also. Why, I really don't know. Maybe I was just not ready to fully embrace the wheelchair thing. My wife surprised me with a flexible tripod and a camera for Christmas, and I've been happily snapping away since, with some surprisingly good results (if I do say so myself). The camera my wife gave me also just happened to have the capability of shooting videos, and one afternoon I decided to test out its video capabilities while my wife Karen and I ran some errands around our neighborhood. I edited the video and added commentary, and sent the results to some friends and family. They all really enjoyed the video, and encouraged me to make more. That's really the way the Wheelchair Kamikaze blog was born, as an Internet repository for the videos. Once I had the site up and running, I started writing posts on a variety of MS related topics, and before I knew it I had an Internet alter ego that sometimes seems to have a life of its own...
Your wife is someone we might catch a glimpse of in your videos. She is also your caregiver. How do you each differentiate between your spousal relationship and your caregiving relationship? Or do you?
First, I must say that my wife is an amazing woman. We had only been married a year at the time of my diagnosis, and I don't think anybody would have blamed her if she had just decided that this wasn't what she signed up for, and beat a hasty retreat. Instead, she's been with me every step of the way (or stumble of the way, more accurately), sitting by my side through almost innumerable treatments and procedures, many of which included large needles and the presence of blood. I honestly don't know if I'd have had the same strength she does, had the situation been reversed. We've both been horribly ripped off by this disease, but I had no choice in the matter. She did, and chose to stick around. There can be no better measure of the goodness of a person. As for the spouse/caregiver conundrum, as I said, I'm a hell of a lucky guy. The strange thing is that Karen is very unlike many of the other women that populated my romantic past. She's social, but doesn't crave the nightlife, and in fact is something of a homebody. She's relentlessly optimistic, and often seems to have an innate sense of knowing when to step in to help me out when I'm having obvious trouble doing something, and when to let me fight for my little victories. My disability progressed fairly rapidly, but slowly enough to allow us both to adapt to my changing condition.
Of course, it has still been incredibly hard on both of us. As the husband of such a wonderful woman, it's incredibly frustrating to not be able to provide her with much of what she deserves, both materially and emotionally. We've both dreamed of going to Pompeii, or exploring little towns in the South of France or in Tuscany. In my present condition, that's just not going to happen. We order in a lot, rather than being able to take advantage of the almost unimaginably rich New York restaurant environment, and we both love good food. No quick weekend trips to the mountains, or to some charming little beach community. The disease definitely does make a mix up of spouse/patient/caregiver emotions and responsibilities. When we were first married, we had a yellow lab who had a myriad of health problems, including cancer and autoimmune hepatitis. In a way, caring for Stella was training for the nuclear bomb that was to come. Sometimes it really kills me that I can't do the things with and for Karen that I know she deserves. I'd give everything I own to just be able to stroll through Central Park holding hands, once again. Have I mentioned that MS sucks?
Absolutely, MS can suck at times.
To be continued in Part Two...