Wednesday, May 30, 2012

Labels (not the kind on soup cans)

imagesLabels- short phrases that summarize the characteristics of a person or group- get a bad rap. I'm here to defend them.

"Don't put a label on me" is a common appeal. I get that. Yet, wouldn't communication become excessively cumbersome if we didn't employ these linguistic shortcuts? To bastardize a phrase used by the National Rifle Association- “Labels don't stereotype people. People stereotype people.”

We need labels; we just need to use them responsibly.

Some labels are spot on. Here’s an example from my life. Lots of people with MS are frustrated by the various labels such as Relapsing Remitting MS (RRMS), Primary Progressive MS (PPMS), and Secondary Progressive MS (SPMS). Some patients, like my friend the Wheelchair Kamikaze, even wonder if the MS label applies to them at all. Many people have several characteristics of one or more category, and therefore don't have a good answer to the question, "What type of MS do you have?" This can be an important distinction, as it affects treatment options and insurance coverage. But in my case, I couldn't be a more classic PPMS than I am. I am male. My lesion load is primarily in my cervical spine. My disease initially presented with weakness in my legs. I've never experienced anything resembling a relapse or a remission. There's no question in my mind that I have MS, and that I have PPMS. Good label.

In contrast, it's almost impossible to label my politics. I'm not a registered Democrat or Republican. I'm a fiscal conservative, like a Republican. But I am a social liberal, like a Democrat. I believe in broad individual rights, like a Libertarian. You just can't stick an accurate label on me.

In the wheelchair world, there exists a set of common labels. Many people are in wheelchairs because of spinal cord injuries. They are referred to either as paraplegics, with full or partial paralysis in their legs, or quadriplegics, with full or partial paralysis in all four limbs.

I didn't suffer a spinal cord injury, but I have a disease that mimics one. Therefore, I think it's appropriate to label me as either a paraplegic or quadriplegic. For the first six or seven years of my disease, I think I was clearly a paraplegic, at worse. Only my legs were affected. Somewhere along the line, though, I started to develop disability in my hands and arms. I don't think it was appropriate to classify myself as a quadriplegic the first time I had difficulty shuffling a deck of cards. However, I feel like it's appropriate now.

But, do I legitimately qualify for the quadriplegic label, which is usually reserved for people with spinal cord injuries? I think so. Therefore, if the spinal cord injury population has no objection, I'd like to use that label to economize on the number of words I have to employ in order to describe the extent of my disability.

Having made this point, however, I think my response to the question "Why are you in a wheelchair?" will remain "Because I have MS." But if I am ever asked the question "Are you a paraplegic or a quadriplegic?" I think I'll respond. “I’m a quad, thanks for asking.”

Tuesday, May 22, 2012

The 10 Best Things About MS

As with my previous post, The 10 Worst Things About MS, I’m drawing on my personal experiences here. This disease attacks everybody in a different way, and therefore each MS journey is unique.

I'm out of the Corporate Rat Race
I had a decent career in terms of income and position, but on the whole I found the entire venture to be unfulfilling. Since I stopped working due to MS, I’ve run a lot of “what should I have been” career scenarios in my head. If I had a do-over, I would not again choose the corporate life and all of its associated bullshit. I missed my calling, whatever it was.

2008 806Chicks Dig Me
The overused phrase "nothing is sexier than a man in a wheelchair" definitely applies to me. Since I started using a wheelchair, it's as if I've transformed from a solid 6 to a 9+. Kim remains unconvinced of my newfound sexual magnetism. She thinks it's all in my head.

I offer up the photograph on the right, however, as irrefutable evidence of the effect I now have on women. Last year I was in balance mode in my iBot wheelchair, zipping along a casino floor in Las Vegas. Kim was randomly snapping some pictures. Notice the lovely lady on the right, and where her eyes are directed (click on photo to enlarge). I was clearly being checked out. If I had made eye contact with her, it probably would've sealed the deal. But given my fidelity, and the close proximity of my wife, I didn't even acknowledge her as she passed by.

Another broken heart in my wake.


I Don't Feel Rushed Anymore

You know how chaotic life can be when you're a parent, spouse, friend, relative, employee, boss, citizen, and more, all at once. Because I no longer work, 40 to 60 hours a week of craziness has been subtracted from the equation. What a calming effect that has had my life. It's not good that I was forced to retire early, but retirement is good medicine.

2010 03 01 Michele, Marc Stecker, Barbara, Mitch in NYC before first CCSVI procedureI've Met so Many Wonderful People That I Otherwise Wouldn't Have
I was never the kind of person to volunteer at an old folks home or a hospital. I was too busy. Although I had sympathy for disabled people, I can't say that I knew very many (except my mother).

Since I've become a card-carrying member of the disabled community, I have met so many interesting, compassionate, and brave people that I would never have otherwise known. My life is richer for this, and that's why it makes my list of the 10 best things about having MS.



Accessible Tickets at Sporting Events
Boston area professional sports fans are rabid. Both the Patriots and the Red Sox sell out their entire season on the first day. So, if you're not lucky enough to score tickets on that day, you're relegated to buying them on the secondary market, which can often be at a huge mark up- except for wheelchair accessible tickets. I can get those from the ticket office for almost any game, often on short notice, and always at face value.

I've Been Able to Take Stock of What’s Truly Important
It's so cliché for people who have experienced intense trauma to say that they now appreciate life more, but I must tell you, it's true. Before I became disabled, I would attach such importance to items that were relatively trivial. Now that I've gained this wisdom, via the school of hard knocks, I'm a more well-rounded person for it (mentally, if not physically).

I Never Want for a Chair
Think of all the times when you are in need of a chair. Maybe you were at a busy restaurant or bar, and there was no place to sit. Maybe you were walking for a long while and your legs were tired, but the cold wet ground was the only place to rest. I never have this problem. Wherever I go, my chair is sure to follow.

I've Become a More Empathetic Person
I've always been a caring person, but, because I am a fiscal conservative, I used to be a little less empathetic toward the disadvantaged individuals in our society. For example, I felt that the only problem with government assistance was that the system was being taken advantage of by scammers, rather than the fact that many programs were not meeting the needs of the public. I'm still a fiscal conservative, but now I have a renewed appreciation for the struggles that some people endure, through no fault of their own. I know that we can't solve the world’s problems by taxing and spending, but we need to be very thoughtful and compassionate when we make these critical decisions.

I'm Able to Manage This Blog
In high school I was considered a pretty decent writer. In college I took one composition course, and didn't click with the instructor. Then, for the next 23 years all I did was business writing. I always wanted to reconnect with my creative and contemplative self, and because of the time afforded me by my disability I was able to do just that. It has been rewarding in terms of scratching my itch to write, connecting with disabled and healthy people alike, and making a difference in the world.

Handicapped Parking, of Course
I know all those empty handicapped spaces in the front row frustrate you healthy people, but preferred parking is the biggest reason I chose to be disabled in the first place.

Tuesday, May 15, 2012

The 10 Worst Things About MS

Angry Talk (Comic Style)
(Photo credit: Wikipedia)
I’m referring to my personal situation. This disease attacks everybody in a different way, and therefore each person's experience with MS is unique.

High Costs
This disease is damned expensive. Last year I had $28,000 worth of unreimbursed medical expenses. This was in addition to even more medical expenses that were covered by insurance. Sure, it's a partial tax deduction, but I'd rather not have the expenses in the first place (a partial tax deduction does not make up for the expense, not by a long shot).

I Can't Do All the Fun Things I Used to Do
This is perhaps the most obvious drawback to having MS. I can no longer: walk, drive, swim, run, stand, lift, grab, etc. I have difficulty traveling and socializing, but I still do some of both.

Poor Health Due to Lack of Exercise
Everywhere I turn there is another news story about how important exercise is for overall health. It’s the magic pill, the golden egg, the cat’s meow. Every time I come across one of these articles, I am reminded that it’s not only the devil I know that may be my downfall, but also some affliction associated with my MS-induced, sedentary lifestyle. Since I can't do any meaningful exercise, it seems likely that I'm destined for any number of potential diseases like diabetes, cancer, heart disease, etc.

Going to the Bathroom
Even at home it’s a lot of work, and it takes a lot of time. But, when I'm out in public it can be very difficult to find an accessible bathroom at all. As a result, there are some places that I simply can't go, or places where I have to strategically restrict my intake of fluids, which is generally unhealthy but often the only practical solution.

Feeling Isolated
When I stopped working and later stopped driving, it was inevitable that I would become somewhat isolated. I've made lots of internet friends, but there's still that feeling of seclusion when I sit home for long periods without direct human contact. I'm looking forward to enjoying my new neighborhood this summer. That should help.

Uncertainty about the Future
If you feel confident about your future, you're likely deluding yourself, and I say this in the most supportive way. Each and every one of us could experience a life altering or life ending event at any moment, and we should live accordingly. It's just that for people like me, the probability of negative future outcomes is much higher than average.

For example, after our hugely successful vacation in the Bahamas earlier this year, the whole gang started talking about repeating the trip again next year. But I just can't plan that far ahead. I don't know what my life is going to look like in 6 or 12 months, so I am hesitant to make commitments more than a few months out.

Everyone plans for retirement. I can't even plan a year ahead, let alone 10 or 20 years. Interestingly, because of my disability, I have penalty-free access to my IRA retirement accounts, as if I've already reached retirement age. Should I spend some of that money now, while I can enjoy it, or should I save it for this uncertain future of mine (of ours)?

I Feel I'm Holding People Back
Sure, I'm the one who’s disabled, but if you choose to spend time with me then your life is at least temporarily constrained by MS as well. Clearly, people go out of their way to downplay this sentiment. Nevertheless, the perception that I am holding people back does wear on me.

I Can't Work Anymore
I miss all the positive aspects of employment, including income; sense of accomplishment; sense of being engaged in worthy endeavors; and spending time with customers, vendors, and coworkers who were some of the nicest people I knew.

I Look Scary
I'm so used to being in a wheelchair now that I often don't give it a second thought. Then, I'll pass by a mirror in a store, for example, and I'll think something like, "Damn, you look really, really disabled in that wheelchair."

I feel like wearing a sign that says, "It's okay. I'm okay." I think if people knew that I'm leading a contented life then they would be more comfortable when they encounter me.

I usually have Kim take the headrest off my new wheelchair when we’re going out in public. I just need it for the full recline mode, which I only make use of at home. Not having the headrest attached makes a huge difference in how scary I appear.

I also attempt to counter this perception problem by being outwardly engaging and friendly, which I wrote about here.

I Can't Go Places

In the history of mankind, wheelchair accessibility has never been better than it is now, but it still sucks, and it always will suck. There are just so many places I can’t go.

The Treatments
If the disease doesn't get you, the treatments often will. Many MS treatments have serious side effects, even death. They are often administered as chemotherapy, daily injections, or monthly infusions. Only recently have any oral medications been approved, and of course they don't work for my type of MS. Right now I'm getting chemotherapy drugs injected into my spine every eight weeks. That's a lot of fun.

I'm sure I've forgotten to mention some obvious drawbacks. Maybe that's due to my cognitive abilities having been diminished by MS?

In the interest of equal time, my next post will be: The 10 Best Things About Having MS (seriously).

Did any of you notice that there are 11 items in my "10 Worst Things" list? I couldn't pick one to eliminate.
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Thursday, May 10, 2012

The Party in My Spine Continues

The lumbar region in regards to the rest of th...
The lumbar region in regards to the rest of the spine. (Photo credit: Wikipedia)
For me, it's all about the spine. My version of MS is destroying the axons in my cervical spine. In an attempt to thwart this attack, I've been receiving injections of a drug called methotrexate, directly into my spinal column via a spinal tap, or lumbar puncture.

In my previous post I explained how I had been suffering from a side effect of the spinal tap, which is called a post-lumbar puncture headache. The identifying characteristic of this headache is that it can be severe when you're in an upright position, but is mild or nonexistent when you're prone. According to one source, this occurs in between 10% and 30% of lumbar punctures. Many of you have had lumbar punctures for any of a variety of reasons such as diagnostic procedures (MS, meningitis, etc.) or an epidural during childbirth. So, I'm sure a few of you have had The Headache.

If the headache doesn't subside within a couple of days, the standard treatment is called an epidural blood patch. I wrote in my previous post about having a post-lumbar puncture headache from Tuesday through Friday of last week, and about how I finally received a blood patch on Friday afternoon, and experienced immediate and complete relief. Although that was the end of my post, unfortunately it was not the end of the story.

A little over 24 hours later I began to feel headaches again, and by Sunday morning they were back in full force. It turns out that about 10% of the time a blood patch does not provide permanent relief. I waited a couple of more days and then went in for a second blood patch yesterday, nine days after my initial lumbar puncture.

I sit here today hopeful, if not confident, that this episode may finally be behind me. If it isn't, I probably won’t have a third blood patch. I’ll just ride it out. Post-lumbar puncture headaches usually dissipate on their own within a couple of weeks at the worst.

It's been a pretty unpleasant ride, and yes, my back is a little sore too. 

Looking ahead about six weeks, my next intrathecal methotrexate treatment may be a repeat performance. I don't know whether to shrug off what occurred as bad luck which probably won't happen next time, or if there is something about the procedure or about my spine that makes me more likely than average to suffer from a post-lumbar puncture headache again.

Allow me to be clear about one thing. Suspending the intrathecal methotrexate treatments due to this discomfort is not an option, yet. Although I consider success from this treatment regimen to be a long shot, it remains my best option for avoiding complete paralysis in the coming years. So even if I have to suffer in a similar manner while I continue to evaluate this treatment, I will. But I sure as heck would rather not.

There is an option that my oncologist, who is administering this treatment, has offered. There is a device called an Ommaya Reservoir which is essentially a port in your skull where the intrathecal treatments can be given with a syringe in a simple and painless manner. The only problem is that you're walking around every day of your life with a small hole in your skull.

If I ever decide that intrathecal methotrexate is the long term answer for me, I might opt for the Ommaya Reservoir. But I'm very reluctant to have a permanent (although removable) port installed in my skull if within a few more cycles of treatment I might decide that intrathecal methotrexate is not working for me, just like every other MS treatment in my life has not worked for me.

Decisions, decisions.

Does anybody out there have experience with Ommaya Reservoirs? If so, please respond in the comments section here or send me an e-mail at email@enjoyingtheride.com.

As Kim was helping me get dressed this morning, after only my second shower in almost 2 weeks (it's hard to shower when you're lying down), and we were gratefully resuming our normal routine, she observed that our everyday problems aren't so bad when compared to what we had been through over the past nine days. This begs the question: why must we suffer adversity in order to fully appreciate our good fortune?



Note: To see all of my intrathecal methotrexate posts, click here. They are listed in reverse chronological order.
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Friday, May 4, 2012

“Fun with Spinal Taps” or “Why I Had to Lie Flat on My Back All Week”

126069
I'm sorry I didn't make my normal post this week. Here's what happened.

As I wrote about here, I am now receiving injections of a chemotherapy drug called methotrexate directly into my spinal cord. This is an experimental treatment for MS.

Sometimes when a doctor pierces the spinal cord with a needle, in order to either extract fluid for testing or inject medicine for treatment, the puncture that the needle leaves in the dural lining of the spinal cord does not completely and immediately close (or heal).

When this problem occurs, which is between 10% and 30% of the time with lumbar punctures (LPs), the ensuing leakage of spinal fluid causes a headache that can be severe when sitting up, but is usually mild when lying flat. I was lucky enough to experience an LP headache after my injection on Monday of this week, and it was rather debilitating.

I had to lie flat in bed or be completely reclined in my wheelchair from Monday of this week until today (Friday), except for a few uncomfortable instances where I had no alternative but to be upright for a few minutes.

Sometimes these LP headaches resolve themselves within a couple of days. If they don't, then the standard treatment is called a blood patch, which I received today.

In a nutshell, with a blood patch the doctor takes about 15 ml of blood out of an arm vein and injects that blood directly into your spinal cord, at about the same location as the original puncture. So I had the pleasure of enduring a second spinal tap this week to treat the side effects from the first spinal tap.

I'm happy to report that the blood patch procedure provided complete and immediate relief, as it does in about 90% of cases. I'm now sitting upright in my wheelchair, reading my e-mails and completing other tasks that were difficult to do while lying flat on my back.

And I quite look forward to once again eating peas at dinner without them ending up in my bed sheets.


Note for people who might undergo a spinal tap: I found a great article that describes in some detail why this post-lumbar puncture headache occurs, and discusses how it can be avoided and/or treated. Click here.


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