Wednesday, February 29, 2012

Intrathecal Methotrexate (ITMTX) – My Next Great Adventure

spinal-tapIntrathecal: injected into the fluid surrounding the spinal cord and brain.

Methotrexate: a chemotherapy agent administered intrathecally for lymphoma and childhood leukemia, and in pill form for rheumatoid arthritis and several other ailments.

That's right. I'm going to have a chemotherapy drug injected into my spinal fluid every eight weeks or so. What fun! Don't worry. Although ITMTX is not child's play, neither should it trigger hair loss or nausea like many other chemotherapy agents do.

I’ve noticed that many physicians, none of whom actually have the disease, are prone to say things like, "We are making serious progress in the battle on MS," or, "There has never been a better time to have MS." This is misleading in general and utterly false for primary progressive multiple sclerosis, my type. We are not making any progress on PPMS, serious or otherwise, and it is no better to have PPMS today than it was when Jimmy Carter was president.

I keep searching for something, anything, that will cure slow down the progression of this damn disease. Here's what I've tried so far:
Novantrone: a chemotherapy agent administered intravenously four times per year. It didn't work.
Copaxone: an immunomodulator administered as a daily self-injection. Felt like a bee sting. It didn't work.
Oral methotrexate: a once a week pill. It didn't work.
Low dose naltrexone: a daily pill. It didn't work.
Rituxan: a chemotherapy agent administered intravenously four times per year. Seemed to work at first, but clearly didn't after a while.
CCSVI treatment: an interventional radiologist used angioplasty techniques to open restrictions in the veins that drain my central nervous system. I had this procedure twice. It didn't work.
In the past year I've not even attempted to treat my PPMS because I saw no promising options. Then a friend told me about a neurologist in Manhattan, Dr. Sadiq, who conducts MS research and has published the results of his open label trial of over 100 progressive patients being treated with ITMTX. The long and short of it is that about 82% of his PPMS patients either stabilized or improved after beginning this treatment.

imagesDr. Sadiq is a well-regarded MS scientist and clinician. So why am I less than optimistic that this will work?

In the medical field there are countless encouraging, preliminary studies that are later disproved by more rigorous follow-up trials. Since no trial, not even one, has ever been successful for PPMS, this is probably a loser as well. But I'm desperate, as I'm not that far from being completely immobile below the neck. I don't have the luxury of time to sit back and wait for everyone to figure this out to the nth degree. As I did with CCSVI treatment, I need to push my doctors to take action, now.

After reviewing Dr. Sadiq’s research a few months ago, I approached my neurologist to discuss the ITMTX option. He was initially dismissive, having a perception that ITMTX was too risky. I kept pushing, and he finally consulted with some oncologists, who changed his attitude about the safety of this treatment. He set me up with an oncologist associate of his, who routinely administers ITMTX to his cancer patients. Kim and I consulted with him on Monday.  I will be his first MS patient.

I've never had such a thorough examination/consultation. This doctor sat with Kim and me for 90 minutes and discussed the research papers that I had provided, his experience with this treatment for cancer patients, and my medical history. My first injection (via spinal tap) will be next week. It may take me many months to determine if this is helping or not, but I'll keep you posted. (see this 9 month positive report)

It’s a bit like…
I've been at this party for a long, long time. I've danced with a few pretty girls, but none of them have worked out. Why am I still here then? Well, this is the only party in town, and I'm not ready to turn in just yet. I'm still enjoying myself, and I'd like to see where this goes.
Dance
(Photo credit: Nuno Duarte)
Lately I've been a bit of a wallflower. There are plenty of women to choose from, but none of them interest me, and the feeling seems to be mutual. I have my eye out for that certain someone. Maybe she's not my soul mate, per se, but that's not what I need. I'm just looking for a girl who can make my days a little brighter.
But wait, who is this? There's a girl I'm just noticing for the first time. She's not particularly pretty or popular, but there's just something about her. What have I got to lose?
I approach her with no particular expectations or illusions, and in my most suave and confident manner I whisper in her ear, "Let's dance."
To be continued…


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


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Wednesday, February 22, 2012

Handicapped Parking

English: A sign indicating that the parking sp...
Image via Wikipedia
As I've mentioned before, my mother was a wheelchair user from the time I was six years old, so I knew about handicapped parking challenges from an early age. I made it a point to keep an eye out for people who misused these spaces.

As I matured into a young adult and gained more self-confidence, I would sometimes confront people who used a handicapped space but looked healthy, even if they had a permit. I was wrong to do that.

When I was diagnosed with MS I became aware that many people have invisible disabilities. Maybe they walk perfectly well for the first 100 yards, then their legs tire. Maybe after a short time they need to stop and let their heart or lungs catch up. Maybe they deserve their handicapped parking space, even if I’m not aware of what their disability is. Frankly, it's none of my damn business.

Yet, this remains a bitter pill to swallow, because I still believe that 90% of the healthy-looking people I see using handicapped parking spaces, permit or none, are actually cheats. Because I don't have enough information to accuse any particular person, however, I must give everyone the benefit of the doubt.

Of course, if someone in a handicapped space doesn't have a permit at all, then they are fair game. I recently learned of an iPhone app where you can report cheaters. Here’s a similar app that also works on Android and Blackberry phones.

But cheaters aren't the only problem in the handicapped parking world. Engineers and drafters routinely screw things up too. When they design parking lots and streets, they don't always follow regulations, and even if they do, they don't always use common sense.

One design problem that I often encounter is that the access strip, the yellow striped area where I unload from my wheelchair van, is not wide enough. Skinny access strips are just a token attempt at making the handicapped parking space truly accessible.

There is a related misuse of these access strips. Often, when all the handicapped spaces are taken, some idiot will decide that a nice wide access strip beside my van is actually an extra parking space for them. The first few times I encountered situations like this, I would scramble for a scrap of paper and a pen so I could leave a note explaining the way the world works to these morons.

So I decided to just draft a form letter, which I keep about 10 copies of in my glove box. In this letter, I try to strike a balance between explaining the infraction to otherwise well-intentioned dimwits (or possibly just old folks who don’t think clearly anymore and should no longer be driving), versus ripping a new one for people who understood what they were doing but just didn't care. Here's what I came up with:
Van handicapped spaces are laid out so that a person like me, who uses a wheelchair van, can load and unload beside the van. By illegally parking in the space reserved for loading and unloading, you made it impossible for me to get back into my van. These access strips are denoted by striped lines on the pavement, right under your car. I guess you also didn’t notice the big sticker on my side door asking you not to park within 8 feet of me.
Maybe my son or wife was with me today, in which case they had to get into the van and pull it back a few feet before opening the door and extending the ramp for me. However, I do drive with hand controls (I don't anymore, but that's none of their business), and maybe this time I was by myself. If so, I had to ask a perfect stranger to back the van out a few feet for me so that I could open the side door, extend the ramp, and drive into my van. If you are disabled yourself then you know that there are enough challenges associated with being handicapped already. We don’t need to be making life more difficult for one another. If you’re not disabled, then you’ll just have to try to imagine my frustration with you.
Please don’t park illegally in this manner again.
Sincerely,
Mitch
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Wednesday, February 15, 2012

I’m on a Mission

Ever since I first ventured out in public with a wooden cane a few years ago, I've been on a mission.

Until I became one, I hadn't much noticed disabled people. Shortly after my diagnosis, however, I observed that the majority of disabled people who I encountered in public appeared to be miserable, and justifiably so. By reporting this observation, am I being unduly harsh or unfair to the disabled community? No. I think I'm just being honest.

If we accept my premise that most disabled people exhibit a gloomy disposition in public, then the question becomes how does this fact serve us? My answer- not well at all. When we appear sullen and withdrawn then it's easy for the healthy population to ignore us. They look right through us. People’s natural tendency is to avoid unpleasantness. Can we, should we, make ourselves less unpleasant for them?

I’m not suggesting that this is fair burden for us to carry, but I believe it is an appropriate one. We look so different from the healthy population that all too often they simply don't identify with us. Sure, they pity us, but that's not what we want.

We want the healthy people that we interact with in public to treat us as if we are not disabled. Or, to the extent that they do perceive our disability and reflect upon it, we want them to think, "Other than his disability, this guy is just like me," or "It’s only by good fortune that I’m not in his shoes." When people identify with us, and truly empathize with us, then we have their attention and they can be helpful.

We want the public to help. We want them to demand action from their government to further our causes. We want them to donate to charities that seek to cure what ails us. We want them to make buildings and parks and homes more accessible. We want the entrepreneurs to see the mutual benefits associated with making our lives better. We want Medicare to approve wheelchairs like my iBot that actually integrate us into our social and physical environments, not just allow us to move from bedroom to bathroom to kitchen. We don't want their pity. We want their respect and their help.


Toward this end, I've made it my personal mission to not appear miserable in public, even if I’m having a bad day. I know I’m not always successful in this endeavor, but I usually am. And I’m not a gregarious person by nature, but rather an introvert. I can be so caught up in my own little world that I’ll not even notice what others are doing around me. So, becoming friendly and outgoing in public is work for me. Nevertheless, when I am out in the community I make an extra effort to look as alert as I can, smile easily, and engage people in lively conversation whenever appropriate.

This approach is not completely altruistic though. It's not only about the mission. I behave this way, in part, for selfish reasons. Just as even a forced smile can improve your mood, compelling yourself to engage with others is a bootstrapping exercise that can potentially brighten your day. But it doesn't matter what my motivation is. My positive behavior can serve multiple purposes.

2000 Oct 13 copyI'm aware that a few of my disabled friends may be irritated by this post. Isn't it enough that we suffer, Mitch? Must we also put in the extra effort to conceal our pain when we’re in public, to essentially be disingenuous? Of course not. I know that it is unfair to expect all disabled people to be friendly and engaging in public. Fatigue, depression, and other physical and mental challenges are sometimes overwhelming. That’s OK; there are plenty of us who are capable, at least some of the time. And to be clear, I am NOT saying that if you can't muster a happy face then you shouldn't go out in public at all.

If you are able to, and you are so inclined, then please join me in my mission. All that you need to do is make an extra effort to be engaging when you are in public. While you are out there meeting people, think of yourself as an ambassador for the disabled community. We can change perceptions one interaction at a time.

2007 638 copyI didn’t dream up this mission myself. I inherited the idea from my mother, who, as a quadriplegic, fought the good fight for the last 39 years of her life. Her weapons: grace, dignity, and a warm smile.

Wednesday, February 8, 2012

My Perfect Day

Do you ever fantasize about the perfect day? I'm not talking about winning the lottery, lying on a tropical beach sipping Coronas, or watching Yankee Stadium fall into a big sinkhole. I'm talking about the kind of day where everything in your mundane little life simply goes right for once, and nothing goes wrong.

Below is my list of the routine events that, if they all came to be, would constitute my perfect day. At the end of each event is the precise, documented success rate that I currently enjoy for that item.
  • I successfully get myself up in bed (usually between 3:00 and 4:00 AM) without Kim's assistance, pee, and lie back down in bed without Kim's assistance, thereby not interrupting her sleep. 20% success rate
  • After the previous, considerable exertion I'm able to fall back asleep before Kim's alarm goes off at 6 AM. 50% success
  • In the morning, I'm able to get out of bed and get into my wheelchair without Kim's assistance. 50% success
  • It’s not a shower day (shower days are more work). 50% success
  • When I let Phoebe outdoors for the first time in the morning she doesn't bark incessantly and wake up the whole neighborhood. 75% success
  • I have some interesting e-mail awaiting me when I open up my computer, instead of just a bunch of crap. 25% success
  • As I'm listening to the Today show in the background, there's not some story that pisses me off because of deficient reporting or clueless people (I keep watching, though, because there are often segments that inform me, entertain me, or otherwise make me happy). 10% success
  • I do something that significantly improves another person’s life. 25% success
  • Our cat doesn't walk on a countertop, sun herself on the kitchen table, or puke somewhere (Kim likes the cat). 50% success
  • At no point during the day do I become frustrated because I couldn't reach something important, or I dropped something important, or I had to forever stop doing something that I've always been able to do before. 8% success
  • It’s a nice enough day that I get to leave the house and go somewhere in the neighborhood on my own. 14% success in the winter, 95% in the summer
  • I do something truly productive during the day (like publishing a blog post or digitizing old photographs). 50% success
  • I remember to tell Kim that I love her (I like to make it special, not routine…) 25% success
  • I learn something, maybe in a book, an online article, a blog post, or a video, that genuinely helps me see the world more clearly. 25% success
  • When Kim gets home we do something interesting, either inside the house or outside the house, instead of sitting in front of the TV and/or our computers all night. 50% success
  • A friend comes to visit. 10% success
  • Something good happens during the day to make me smile or laugh. 99% success
I learned in statistics class that the probability of a group of events occurring simultaneously is the product of their individual probabilities. So, in order for me to calculate the odds of experiencing the perfect day, as described above, I just need to multiply all of the success rates and see what I get.

So, what do you think my odds are of having all of the above items occur in a single day? Is it one in a hundred, one in a million? Nope. My odds of having a perfect day are one in a billion!

Fortunately, it's not important that I have any perfect days. It’s only important that I have some good days, which I do.

Wednesday, February 1, 2012

Preserving My Identity

Colors 10 minutes before sunrise. Rocher Percé...
(Photo credit: Wikipedia)
I've been asked how it is that I maintain my identity – how it is I keep MS from defining who I am.

To a large extent, I don't.

Earlier in my disease progression, MS was a minor player in my life. It was an afterthought, an asterisk, a postscript. It rendered my identity a bit more interesting than it otherwise would've been, but that was all.

As the disease began to have a profound effect on my daily activities such as walking and using my hands, it became more and more difficult to keep MS from shaping my personal identity. So I didn't fight it. I embraced it.

I am a husband with MS, a friend with MS, a brother and a father with MS. I am a blogger with MS. Note that MS doesn't supplant my identity; it enriches it. Don't get me wrong. I'm not saying that having MS is a good thing. It absolutely sucks. But embracing the fact that I have MS doesn't.

Granted, for some people with MS it may be important to keep the disease out of your public identity, often for reasons having to do with career preservation. I get that. The only advice I have for you, if you need any, is this. Be passionate about what you do. But when MS needs a chunk of your time- whether for doctors’ appointments or naps- give it what it demands, then return to your primary interests without apology or guilt. I did that for quite a few years, and I think I was largely successful.

I'm not only a guy with MS. For brief periods of time I’m able to put the disease out of my mind. The best distractions are television and movies, books, conversations, or any task requiring concentration (even though my ability to concentrate is diminished). Sleep? I’d say my dreams are a mishmash of walking Mitch and wheelchair Mitch, often switching back and forth indiscriminately.

I'd like to think that people I'm interacting with, at least for brief periods of time, can also forget about the disease. But to imagine that it's ever far removed from who I am would be an act of denial.

Please consider the notion that accepting these changes to your identity does not represent failure or defeat. It may simply be the best way to deal with a new reality.

I'm now that guy with MS, and being identified as such is not a bad thing. It's just a thing.
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