'TIS THE SEASON

A lovely thing about Christmas is that it's compulsory, like a thunderstorm, and we all go through it together. 
Garrison Keillor



We've had Black Friday, Red Monday, and last night they lit the Christmas tree in Rockefeller Center here in New York, so I know the holidays are really kicking into high gear. No doubt, this can be a really wonderful time of year. Personally, it is my favorite. I love the spirit, the cheesy music (these are the only weeks I can fathom listening to Perry Como, Johnny Mathis or Bing Crosby), the gift-giving, all the cookies, spending time with families. Plus my birthday is in the middle of it (December 16), so it feels especially festive.  



pc

The season can be very stressful though for those of us living with the challenges of MS. Holiday time raises all sorts of issues.  We may want to take part in the festivities but the reality is Christmas and Hanukkuh or Kwanzaa can bring with them their own special kinds of challenges.  And as we all know, stress and MS are a  detrimental combination.  

There are pressures to get everything done in time, to meet all the deadlines and such – oh no, will I remember everyone on my list, will I finish all my shopping, will I mail the packages to those far away, do I have sufficient help to get it all done? Even on-line shopping, so convenient for us MSers, can take a lot out of you. 

For me, the last two years were as fun as ever; that is until Christmas itself arrived and all of the running around, getting and decorating the tree, preparing Christmas cards, and build up to the day left me altogether depleted. I was wiped out, weak and ill, not the condition I wanted to be in, to be sure, for the big day.  



So I have made a promise to myself this year: to take it a little slower and not get stressed out about everything holiday-related. Things will work out, without the accompanying anxiety. I know my wife and kids will get their gifts, and there will be a well-deserved break between Christmas and New Year’s. So we have to hold on tight, drink a little egg nog, watch It's A Wonderful Life or the original A Christmas Carol with Alastair Sim (my favorite), light the menorah should that float your boat, and enjoy the ride.  'Tis the season to be jolly.  No pressure.



Have a wonderful holiday season!



Best Wishes,



Marc
marc@empirelifecoaching.com

A BRIGHT SHINING LIGHT

"Right now, with social networks and other tools on the Internet, all of these 500 million people have a way to say what they're thinking and have their voice be heard." 
Mark Zuckerberg



The key to coping with MS, from my point of view, is to find a way to avoid pessimism, despite the daunting amount of negative information and statistics out there. About 15 years ago when I began exploring the internet, it was the wild wild west, an untamed, unknown universe, constantly evolving in surprising, occasionally scary ways (today it still is, perhaps even more so). Back then, there were bits and pieces of information about the disease floating around but nothing particularly coherent or organized. There were places called “chat rooms” where one could interact with other people facing the challenges of MS; if you poked around you could find people with whom you might anonymously discuss some of the worst aspects of living with the disease. The problem at the time was that, while I was relieved to find some fellow travelers, I kept encountering considerable complaining and whining and self-pity. At first I experienced a certain amount of solace but then I found myself getting very agitated and bummed out.



Today there is more information than is possible to process available on the internet and, fortunately, it is far better organized. Yes, we have tamed it a bit and more recently, I have spent many hours of many days reading all the articles, postings on Facebook groups and in Twitter, the dozens and dozens of blogs (of which I am one), and valuable, informative web resources (“MS Views and News” (http://www.stusviewsandmsnews.blogspot.com/), “Patients Like Me” (patientslikeme.com), “Wheelchair Kamikaze” (http://www.wheelchairkamikaze.com/), among many others).  However, I find myself constantly conflicted. While I want to stay informed and educated, I don't want to define myself by and through the disease by obsessively reading about it. I promise you, I must live with MS constantly, and there is no way for me to be in denial about it.



Then where do we draw the line? Of course, this is such a personal issue. Each of us must find a balance between our natural impulses to understand the realities of multiple sclerosis and finding people with whom we can bond with and share our unique experiences and living our lives in fulfilling ways without the psychological intrusion of the disease. This becomes increasingly difficult as many of us experience the harsh effects of an unpredictable, progressive disease. We make endless adjustments to accommodate our changing needs. Thus, we must redefine, much more than otherwise healthy people, who we are and what we expect to accomplish in our lives. While it is more challenging than ever to set and follow through on goals, there is still the basic gratification that comes from accomplishing basic everyday activities, even a simple task like tying one's shoes.  



So we go on the internet now and then and are grateful for the plethora of information and the freedom we have acquired to interact with our peers. Still, we have to be careful about treading in too deeply and becoming immersed (dare I say drowned) in in an over-abundant electronic universe. We must allow ourselves the space to BMW (bitch, moan, and whine) or shout some appropriate profanities should that be our pleasure (if you ever watched “Lost” on TV, the character Sawyer had a delightful way of saying "son-of-a-bitch," which works well for me). Once we vent our frustrations, we have to remember the delights we can still experience. Sure, MS has taken abilities from me, but it can't steal everything. I won’t let it. Despite my challenges, I still like to watch sunsets, go to the movies, listen to my favorite music (Beach Boys' “Pet Sounds” today), savor a good glass of wine or an iced cold beer. Choose your pleasure. Do what it takes. Get out there and live your life the best way you can. You are worth it.

Have a great couple of weeks.

Peace,


Marc
marc@empirelifecoaching.com

THE DOCTORS AND ME: A TRAGICOMICALLY TRUE STORY PART 3 - THE SAGA CONTINUES

Hindsight gives you 20-20 vision or at least after time passes, one acquires some clarity. At any rate, the events of about 12 years ago seem much clearer now than they did at the time, when life with MS was getting very scary. I had MS for about eight years at that point and Dr. A decided it was time for me to try Avonex. The disease was progressing, however gradually, and it was time to take action.

To alleviate some of the side effects of the Avonex, Dr. A also put me on a course of oral corticosteroids - Prednisone. And this is where the situation took a disastrous turn. The Prednisone seemed to intensify all of my symptoms: in my mind, the numbness and tingling became more severe. Plus I couldn’t sleep. Never the best sleeper in the world, suddenly I was getting just a few hours of sleep a night. So I started to take Ambien to help me get some rest. After three days, I remember calling Dr. A (I was calling him a lot because I really felt unhinged) and asking him if I was in danger of becoming addicted. He told me the most important thing was to get some rest and not worry about addiction. He was right, clearly addiction was never a problem because I would spend the next decade relying on Ambien every night to get a decent night’s sleep.

Between the effects of tapering off the Prednisone and not sleeping, I felt further removed from reality as I had known it. All this was happening while I was trying to maintain a semblance of normalcy at my full-time job and home life, where we were raising our baby girl. Looking back, I really don’t know how I did it.  Joining a support group helped some, but it also had the effect of being in an environment where people were talking about MS all the time when I wanted to forget I even had the disease.

For a couple of days, I called in sick to work and just stayed in bed under the covers, with the curtains closed, in the dark. And while I never contemplated anything as dramatic as suicide, I did feel as though I had a glimpse of the “dark” side, one I had never expected to see in my entire life. As I began to feel as though I was hitting rock bottom, I did something I had never imagined doing before: I started to see a psychiatrist. Which was surprising for me since I’d always thought shrinks were for people who really had problems, who were messed up, like my brother, who could never get his life together. And then it dawned on me: I really had a problem, didn’t I? And all of this is amazing because it wasn’t the disease creating the issue, but all the stupid meds I was on to supposedly make me feel better.

I soon learned that finding the right psychiatrist was like finding the right life partner. The chemistry had to be right. So on my third try, after meeting with a couple of old farts who were strict, by-the-book types who wanted to know all about my childhood when I urgently needed to discuss my current crisis, I found Dr. Jane Epstein, the woman who, without getting overly dramatic, helped save me. 

I spent six months in the care of Dr. Epstein and in the end I was so much better for it. She became my hero. I’ll never forget when we were discussing my support group. I told her I felt bad for the people who didn’t have family or friends to help them. I was fortunate to have those supports to lean on and to turn to for help. Dr. E looked me in the eye and told me, “You don’t have those things by accident. You have them because of who you are.” Wow. Those words have stuck with me ever since. Thank you Dr. E.

So, the short of it is: Life can get better. Yes, the disease has progressed but psychologically I'm in a much better place.  We all have to find our own special way to improve our lives and make them better.

Have a great week.

Peace,

Marc

marc@empirelifecoaching.com

914.715.9496

KEEPING THE FAITH

It is all about hope, isn’t it? I mean, the reason I even invest myself in these remedies and, believe me, I have tried most of them (no bee stings). A few years ago, my son Lu’s friend Oliver, around seven at the time, just said to me, “You should be able to walk. You can stand, and if you can stand that means you can walk some day.” I just wanted to give him a hug.  How wonderfully naïve and, yet, so simply optimistic.

If you’re looking for a remedy, as though it could be in the dumpster in the alley next to your building or in one of the offices in the Empire State Building or buried in Central Park somewhere, it’s just a matter of finding it. You become anxious. It might be a result of desperation, hope, whatever you want to call it. You just get tired of the damn disease doing its business, progressing.

So, when someone comes to you and says they are a healer, maybe you listen. More than you might have when you were a young healthy buck. Now, you take the remedy more seriously than you might otherwise, say, if you did not have a progressive disease. A healer, wow! Another example of an approach I would never have dignified in a previous life, before MS. But since life as I currently know it has become so challenging, I need to give healing more credibility than I might have pre-diagnosis.

What I do know is this: As far as my understanding of them, in our culture, healers are often Native Americans, mystics who possess a power, almost magical to “heal” people’s usually physical ailments. I like the concept, though I’ve never felt comfortable abiding by it myself. The other image of healers, right or wrong, is that of the charlatans, con men usually associated with organized religion who would claim to have special God-given powers that enable paralyzed people to walk or cancer patients to go into remission.

Let’s face it, though, “healing” is appealing conceptually. Seriously, who would not want to let someone run their hands over your body, not even touching you in order to make you feel better?  No drugs, no needles, no visits to cramped doctors’ offices. As someone who does not believe in God or any organized religion, however, this was going to be a challenge. I knew it. The healer, an acquaintance of my mom’s and closer to her age, believed in her skills and, further, she was altogether into astrology, the stars, the moons, their alignment and impact on our lives. This was an approach I had always been skeptical about, to say the least.

And so for several months, I invested myself in the power of the healer. I met her in person and she sincerely believed she could help me. Subsequently, we talked over the phone and she told me to set aside a specific time each day when she would be concentrating on me in order to feel her energy. I viewed this as a major step in my personal development

When my time with healer drew to a close I had learned to relax more and breath better, concentrating on healing and ridding myself of the disease: the experience was not unlike meditation, which I have also tried. And I really wanted the process to work, the healer wanted her skills to work. But, alas, for all of our effort, I never felt myself getting better. Which isn’t to say it wouldn’t work for someone else; it just didn’t work for me.

So I keep plugging away, taking the newest best medicines, exercising as much as I can and planning for the day when I will walk again.  Because if I can stand, shouldn’t I be able to walk?

This all made me think of an old Billy Joel song, "Keeping the Faith": http://www.youtube.com/watch?v=U2pU0QJkMck

 Have a great week!

 Peace,

 Marc

 marc@empirelifecoaching.com

 914.715.9496

THE DOCTORS AND ME: A TRAGICOMICALLY TRUE STORY (PART 2)

When I last left you, I had just gotten under the care of Dr. “A,” who was supposed to be the best of the best.  I wanted and deserved the best of the best, didn’t I?  What I learned, unfortunately, was that reputation does not necessarily translate to superior medical care.  To be honest, I didn’t really have a clear perspective on what made a good or bad doctor. I hadn’t been to a doctor since I had needed a pediatrician (for mono and many of us now know about the connection between mono and MS).  So I went to Dr. “A” for a few years and it was fine.  I was progressing very gradually, still ambulatory.  And yet Dr. “A” put me on Linomide as part of a study.

Screeech!  Hold the phone!  At this point last week, while I was writing this blog, I was struck by yet another in a long series of medical events that are effects of the disease but not a manifestation of the disease itself.  I had inexplicably been running low fevers for a few days. My wife had accompanied me to the ER in our neighborhood on the first night to nip what we thought could be an infection in the bud, but the doctors had found nothing.  Two days later we went back: my above-and-beyond-the-call-of-duty wife had examined my nether region that I told her had been a little “strange” and discovered a “red sore the size of a baseball.”  So we went back to the ER and this time they diagnosed an abscess on my bottom, the result of sitting on it all the time (dammit).  The abscess had been causing the fevers and altogether draining my energy. To our relief, I was discharged very late Wednesday night. We were incredibly happy that I did not have to stay in the hospital.

Little did I know.  So I was discharged and put on a regimen of antibiotics that unbeknownst to me would wreck my digestive system for the next four days. I will spare you the details, but a different woman than my darling Alida would have left me after the agonizing weekend we barely survived. Now remember, this was not the MS but rather a side effect of the disease.  When I went to a doctor for a follow-up on Monday and told him about the bowel problems, he said something along the lines of “Well, you can get an over-the-counter remedy,” which I did immediately. Problem solved. Why couldn’t the ER doctor have mentioned that? It would have spared us a tremendous amount of pain and suffering.

This all brought to mind a song I discovered when I was going through a particularly difficult drug-adjustment period roughly a dozen years ago: The Verve’s “The Drugs Don’t Work” (see link below):

                The drugs don’t work

                They just make it worse

                And I hope I see your face again

The antibiotics are finally having a positive effect, but, man, for a few days they sure made me feel worse. The line in the Verve song about seeing your face again is the singer’s way of saying, I just want things to be the way they were, before all these side effects of side effects kicked in, when I can appreciate the beauty in life rather than feeling as though I was barely clinging to it.

I’m happy to say I’m getting better and feeling stronger every day, but it’s been a rough ride. I will not be defeated and will return soon to share with you more about the doctors and me and life with MS in the Big City. 

Until then,

Stay Gold,

Marc

marc@empirelifecoaching.com

http://www.youtube.com/watch?v=bR8XH3R95xE

THE DOCTORS AND ME: A TRAGICOMICALLY TRUE STORY (PART 1)

Everyone has their own story about how and when they were diagnosed with multiple sclerosis and the subsequent turmoil that ensued. Like the disease itself, the process of diagnosis can vary wildly, taking from days to months to many years. Some people are convinced they have MS, but a doctor has never told them for sure. This is my story. Taking a title from a classic spaghetti western, you could call it “the good, the bad, and the ugly.”

I was diagnosed with MS more than 21 years ago. I had been experiencing numbness in my right pinky and right leg. At first I attributed these symptoms to over-doing it at the gym, but after a few weeks with no improvement, I made an appointment with the family GP in the town near New York City where I grew up.  I was 25 and hadn’t had a reason to go to the doctor since I was a teenager. He prescribed an MRI, which I endured a few days later, the first in what would become a long series of being stuck in a tube with the noise of what seemed like loud clanging of pots and pans right next to my head. 

I’ll never forget the day the doctor called me at work to tell me the results: "You have either Lyme disease or multiple sclerosis."  Just like that, over the phone.  Not: “Why don't you come to my office so we can go over the results.” What an insensitive asshole. And somehow I knew: it wasn't “either or.” I had multiple sclerosis. Like the days when John Lennon and Elvis Presley died or when I met the love of my life, this moment was forever locked in my brain.

All I heard the doctor say was “MS.” Immediately, visions of wheelchairs and walk-a-thons and bike-a-thons floated through my brain. And I burst into tears, bawling like a baby, feeling fear and hopelessness I had never experienced before. After the initial shock, I met with a neurologist who confirmed the MS diagnosis. Then I moved on to a lovely MS specialist from Australia who wanted to put me on a brand-new MS drug called Betaseron, which was the first medication created for the sole purpose of treating the disease.  Not a cure, mind you, but a way to slow the damn thing down. 

However, taking Betaseron meant three weekly injections and since my symptoms had gone away and I felt like my old self again, it was difficult for me to bear the prospect of injecting myself so often. Besides, the MS doctor told me I had a “relapsing-remitting” form of the disease that would remain that way for the foreseeable future. According to her, I was going to live a happy, normal life, and the disease would not interfere with any day-to-day activities. And she thought the way research was headed, there would be a cure in about 10 years, making it harder still to contemplate needles. Looking back on her analysis, I have to laugh: 10 years, 10 years.  If only it were true.

After a number of fits and starts, I ultimately made my way to one of the premier MS specialists in New York City. As these things go, he had come highly recommended from a friend of a friend who knew someone who had MS. What can I say about this doctor except that he was one of the best-known researchers in the city with one of the worst bedside manners I’ve come across in my entire life. If I could just get back all the hours I spent waiting in his waiting room, I could take a vacation or do something more useful with my time. As it was, the time I spent under Dr. A’s “care” was some of the most horrific of my life. But I lived to tell the tale, more of which I will share with you next time in “MS in the Big City.”

Have a great week.  

Stay cool,

Marc

marc@empirelifecoaching.com

LOOKING FOR THE NEXT BEST THING (OR AT LEAST A WORKING RESTROOM)

“Psychiatry's chief contribution to philosophy is the discovery that the toilet is the seat of the soul.”   -Alexander Chase

This week as I began to toss around ideas for topics to write about, I heard myself in my head sounding like a cut-rate stand-up comedian, with jokes beginning along the lines of: did you ever have to go the bathroom really badly and find the bathroom at the bar/restaurant (fill in the blank) isn’t accessible after all.  And then you had to a) ride your scooter home (if you were even near your home) because your scooter couldn’t fit through the door to the bathroom or b) take the water bottle out of your scooter and use it as a urinal (disgusting!) because your scooter couldn’t fit into to the “disability” space and it isn’t as though you can just walk the four feet separating you and the toilet.  But I couldn’t come up with a punch-line.  Simply put, the situation is not funny.

For those of us with MS and bladder control issues, one has to always think ahead; whenever venturing out into the world, one has to worry about the possibility of finding a place to pee.  You map out in your head the accessible bathrooms and become some kind of a restroom connoisseur. You know all the high (believe it or not, Old Navy on 6^th Avenue, clean and roomy) and low (Tompkins Square Park, too many homeless) end bathrooms in most of the city and keep a vague map in your head of where is best to empty your bladder.  Some have suggested I put together a handbook of sorts for people in my situation, to which I respond, “I really don’t want to learn more about this topic than I absolutely have to.  You know, too much information.”

'Nevertheless, Starbucks and Barnes and Noble, who for all intents and purposes are the closest thing the city has to public restrooms, can be lifesavers in a pinch. Movie and conventional theaters are pretty reliable, although it is in these places I’ve come across the worst of the worst: people who don’t want to wait on the longer public lines and dive into the disabled restroom for convenience and to keep me waiting, desperately needing to pee. Recently, I was at the Shubert Theatre on Broadway with my son to see Hair; I was about five feet away from the disabled rest room and the able-bodied young woman saw me coming and quick slammed the door in my face.  I am not typically prone to profanity but I fairly lost it on her when she came out a few minutes later.  On other occasions, people have thought nothing of using the disability toilet when other toilets are free. I guess they like the openness of the space. The new Yankee Stadium has disability stalls with grab bars but a scooter cannot fit inside.  Excellent planning, guys! 

And whenever possible, try to have a back-up plan. You never know when a toilet is going to be broken or simply unavailable and as you all know, when you gotta go you gotta go, which is why I’ve taken to discreetly carrying one of those portable urinals with me wherever I go.  Oh, the adjustments one has to make. 

If all else fails, feel free to stop by my place: 145 East 15 Street, #7A, New York, NY.  If I’m home and the bathroom is free, you’re most welcome. Just call first.

As my dad always said, “Keep fighting the good fight.”

Peace,

Marc

914.715-9496

marc@empirelifecoaching.com

HOT TOWN, SUMMER IN THE CITY or SUPERMAN, I FEEL THY PAIN

Kryptonite is a material from the Superman mythos —the ore form of a radioactive element from Superman's home planet of Krypton. It is famous for being the ultimate physical weakness of Superman. - Wikipedia

It’s not the heat it’s the humidity.  – proverb       

T.S. Eliot wrote, “April is the cruelest month,” but for those of us living with the effects of multiple sclerosis in the northeastern United States, July and August can be far crueler. When climate change chased temperatures over 100 degrees with crazy humidity here in New York City a few weeks ago, I was left with two choices: to journey outside into the brutal heat for more than a few minutes and feel its debilitating effects or stay home planted squarely in front of the air-conditioner. Fortunately, my favorite coffee place is just two blocks away and the perfect destination for iced refreshment.  On the few occasions I ventured out further into the heat, as when I went to the local greenmarket at noontime on a recent blazing Saturday, I ended up feeling like Frosty the Snowman when he melted inside the greenhouse. Fortunately my always helpful 12-year-old son Lucas was there to help mop me up and restore me to my former condition.

For years, any time a friend asked what effect the heat had on me, I referred without humor to Superman and Kryptonite because it I felt it was the most suitable way to explain how the heat makes me feel. It is as if Lex Luthor has defeated me once and for all.

The irony of the situation is that as result of undergoing an air-conditioner-fueled big chill, my body temperature decreases to a level where I can be extremely efficient when I go down the block to the gym and find I can lift more weight than under ordinary circumstances. But the wild swings in function can really screw with my mind, I tell you.  My old man used to say he didn’t know “if he was coming or going,” Now I completely understand what he was talking about.

It is times like this that I wonder if I might be better off moving to a more temperate climate, somewhere in Canada or Northern Europe where life could be more manageable. Alas, it would be difficult to uproot my family and move away from the doctors I depend upon and the friends and culture I value so much. Plus, debillitating heat notwithstanding, New York is the city of my dreams. From the time I was a child, I always knew I’d end up here: it was destiny. Besides, MS has already forced so many adjustments upon me. Leaving New York City is simply one I am not willing to make.

And I know I could wear a cooling vest to alleviate some of the heat’s trauma, and I suppose I will eventually, but for the time being, I’m a little self-conscious about it. Twice a week I go for physical therapy, but after 25 minutes traveling in the heat on my scooter, I require half an hour of icing just to make me functional enough to undertake my usual routine: navigating a couple of hundred feet with a walker (a considerable accomplishment for me under the best of circumstances).

On certain days, like this past Saturday, it can take hours to recover from the heat. No matter how much time I spent in front of the AC, I just couldn’t reach a productive level so when I went to the gym it was an especially challenging session.

It is weather like this that can make me a little wistful and nostalgic, too.  I think of some of the summer activities I can no longer undertake, like swimming in the ocean, walking on the beach, or riding on a roller coaster. Lucas gets frustrated sometimes when I can’t shoot baskets with him. Yet, I am able to appreciate the small pleasures life has to offer: reading The New York Times under the trees at our little neighborhood park, going to an Adele concert and sitting in the front row designated for folks like me with disabilities (alright, MS can have its perks), enjoying lobster rolls from Luke’s in the East Village, watching Derek Jeter get his 3,000^th hit, with a home run no less.  

I will not be defeated.  I came to play and I’m in it for the long haul.  I hope you are, too.

Peace,

Marc

marc@empirelifecoaching.com