MS - A DAY IN THE LIFE

 The below diary piece is my effort to show how much work combating a progressive disease can require.  It’s not the way, it’s just my way. This isn’t to brag or to make anyone feel inadequate or unproductive, though I suspect many of you will relate to certain aspects of this experience. We’ve all got to fight this thing any way we can.

9 am: Awakened by alarm, sit up in bed, drag the morning drugs out of my nightstand. Begin the day by taking one Ampyra, two Mycophenelate (the drug intended to aid with organ transplant that is supposed to help slow the progression of MS). Scooter to bathroom, empty bladder. Take first Tizanidine tablet of day.

Have breakfast of low sugar, high fiber cereal with soymilk. Fresh berries if they are available. Go back to bedroom/office, call insurance company, drug companies as required. This can suck up an hour of a typical morning. Depending on the day, I will use some of the morning for life coaching. Between 11 am and 12 pm, I head over to the gym, located conveniently down the block from my apartment.  I spend 1 ½ - 2 hours using a variety of machines to maintain my strength. 

Go home. Make organic protein shake with more soymilk. Take the following vitamin supplements: Vitamin D, calcium/magnesium with green food base, Vitamin B complex, fish oil, candidastat (yeast balance support), HLC (human lactic commensals). If any of these are unfamiliar to you, Dr. Bates, the naturopathic doctor at the MS facility where I am treated, prescribed them in order to “balance out the bacteria in my gut.” My neuro, Dr. Williams, says there’s a lot going on in the gut. So far, this seems to have been beneficial and I have been feeling a little stronger lately. Supplement protein shake with protein/energy bar. Eat a peach (as the Allman Brothers famously proclaimed).

On the days I don’t go to the gym, I climb onto the bed around mid-morning and do the following: four sets of 10 mid-section lifts and push-ups, 40 hip rolls on each side of my body; with stomach on bed, do 50 back crunches, stretch each leg for several minutes, two sets of 50 back crunches with back on bed. Lie on back, hang one leg off side of bed, do four sets of 6-8 leg lifts. Switch sides, repeat with other leg.

Take second Tizanidine of day. Pop slippery elm tablet (for general body health) into mouth, one of five to ten I’ll take during the day. They are much easier to swallow/suck on than the powder mixed with water above-mentioned Dr. Bates recommended. That combo made me want to puke, too sweet, icky.

Late afternoon, on days I don’t have the full workout, I’ll scooter over to the gym for an upper-body aerobic workout. Don’t mean to brag, but I just set my personal distance record, 2.9 miles in 20 minutes. Note to self: got to get to 3 miles!

Around dinnertime, I take the third Tizanidine of the day. Must be careful about drinking alcohol too close to consumption ’cuz it can make me semi-unconscious, though I’ve been cutting back on quantity since doc and I discussed how it can help with spasticity but also make me somewhat weaker. That was the problem with Baclofen, which helped with spasticity but took away some strength, especially over the long term. I am fortunate to have a lovely wife who makes healthy meals that my Dr. Bates approves of, with lots of greens and proteins. It helps to live two minutes away from the best greenmarket in the city. Trying to adhere to recommended protocol of Dr. Robert Lustig, a nationally recognized “anti-sugar” advocate who was on Alec Baldwin’s recent “Here’s The Thing” podcast (highly recommended). He advised us all to eat lots of browns and greens.

Come nine o’clock or so must remember to take second Ampyra of the day (every 12 hours). This can be a problem when I’m out or doing something social. The short of it is, once in a while, once a week or so, I forget. And if I forget, I do notice a balance/strength loss (perhaps it’s psychological, I don’t know). Oy!

Somewhere in the 9-11 pm zone, when I’m home, I will go to the living room to spend about a half-hour doing sit-to-stand exercises with my walker, maybe even take a few steps. Yo, I be walking again someday! Just have to keep working at it. I have braces to aid with this endeavor. Add 10 or 15 minutes to put these fuckers on. 

Afterwards, I will go to the bedroom and do upper body exercises with this stretchy, rubber device that attaches to the end of my bed. Three sets of four different exercises sitting in my desk chair. Hopefully The Daily Show is on to make them go faster. When I remember, I will put on a special boot to keep my left foot straight  (I’d draw it for you if my skills were worth a damn).

Afterwards or in the middle of sets, I prepare bed-time concoction of following: two Tizanidine, two Baclofen, two Mycophenelate, one magnesium tablet, one LDN (low dose Naltrexone), one Clonazepam. (Note: taking Tizanidine and Baclofen bad for strength during the day, excellent for sleep at night.  Prior to this regimen I’d been a notorious insomniac.)

In bed by 1 am. Guess that makes me a night owl or something…  Now I’m tired, I really gotta go to sleep. 

Oh, one last thing: middle of night, half-asleep, I reach over and take one more Clonazepam, Baclofen, and Tizanidine to ensure a good night’s sleep.

9 am: wake up, do it all over again.

If you have your own stories of these kind of adventures I sure would like to hear about them.

Thank you and have a superior week.  Stay cool!

Best Wishes,

Marc

marc@empirelifecoaching.com

 And for anyone with a hankering to hear the classic Beatles classic tune, go here:

http://www.youtube.com/watch?v=P-Q9D4dcYng

THE TRUTH ABOUT AVONEX

This blog may seem quaint or heart-breaking in light of recent developments regarding interferons.  http://www.nytimes.com/2012/07/18/health/research/multiple-sclerosis-drug-doesnt-stop-disability-study-finds.html?_r=1


“There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow.”

-Orison Swett Marden, American writer associated with the 20th Century New Thought Movement

First, a moment to vent about the excessive heat here in the Northeast. Cabin fever is setting in, and I am not happy. At least we have air conditioning, the Internet, and podcasts. Do you listen to “This American Life”? If not, I recommend checking it out. “Fresh Air” with Terry Gross is good, too, and Alec Baldwin has a great podcast called “Here’s the Thing”. But I digress.

So, recently I began taking Avonex again. (After ultimately losing an excruciating six-mont-long insurance  appeals process to get Rituxan, my doctor advised returning to Avonex, at least for the time being.)  Fourteen years ago, it was the first of many drugs I took to slow the effects of my MS, the first in a series of injectable/intravenous drugs (we always remember our first one, don’t we?). I can’t recall the details, but I must have stopped taking it in order to begin taking Copaxone, then Rebif, and on and on. After a while, you kind of lose track of all the disease-modifying pharmaceuticals. We invest hope and faith in them and then try to get on with our lives. Now, I suppose I have come full circle, back to Avonex. And they say you can’t go home again.

The first time I took Avonex, the drug triggered a severe emotional reaction that resulted in harsh anxiety more from tapering off of the oral steroids my doctor prescribed to alleviate the Avonex side effects. Have you ever tapered off a large amount of steroids? It feel like you are getting electrocuted. I was convinced the disease was progressing at an unprecedented rate. I joined a support group (“You Look So Good”), the only time ever, began to see a psychiatrist, took anti-depressants, and hit a severe personal emotional low. All while working a full-time job and trying to maintain a semblance of normalcy everywhere else in my life. Those were good times.

Fortunately, they lasted a few months and are far in the past. So, after the decade of Copaxone, Tysabri, Novantrone, and all the other junk I poured into my body, coming back to Avonex was going to be a piece of cake, right? 

It is Sunday night a few weeks ago, and I have gotten out the materials to take my first Avonex injection. Things have changed a bit. The drug company has devised the Avostartgrip: you attach this piece of plastic to the syringe so you can control the dose and taper up to the full dose over the first month: quarter-dose the first week, half-dose the second week, and so on.

The only problem is the pharmacy didn’t send syringes to go with the grips. They sent the Pen injectors. Now in case you are wondering, let me explain. It is impossible to fit the grip on to the Pen. It just isn’t meant to be; it physically cannnot happen. But I figured if the pharmacy sent these materials, they must know what they were doing. But the joke was on me because I spent about an hour trying to make it work, culminating with my pressing the button on the pen and spraying a full dose into the air. Fun, fun, fun!

After a few phone calls, the proper syringes were mailed, and now I’ve somewhat reluctantly returned to my Avonex routine, accepting that I am going to feel lousy the morning after (headache, fatigue, etc.). Oh, the adjustments, compromises, tweaking we have to make in our lives to preserve our function and abilities (and sanity). It can suck the big one but we gotta do what we gotta do.

Please, please stay cool, wherever you are.  Have a civilized couple of weeks!

Best Wishes,

Marc

marc@empirelifecoaching.com

P.S. The rockin' little number I was listening to 14 years ago still resonates today.

Medication by Primal Scream.  

Check it out here: http://www.youtube.com/watch?v=N4m-GZpbX_E

MS IS A PROGRESSIVE DISEASE

“Progress imposes not only new possibilities for the future but new restrictions.”

 -Norbert Wiener, 20th century American mathematician

prog·ress

1. a movement toward a goal or to a further or higher stage: the progress of a student toward a degree.

2. developmental activity in science, technology, etc., especially with reference to the commercial opportunities created thereby or to the promotion of the material well-being of the public through the goods, techniques, or facilities created.

3. advancement in general.

Progress, digress, regress. Trangress. So many gresses, but the one connected most to me is the first one – you know it, you love it: progress, progression, as in “I have MS, a progressive disease.” Most of my life I’ve been taught to associate progress with positive developments. The Pilgrim’s Progress was the first one. In Amazon, if you search books for progress, the first title to come up is The Progress Principle: Using Small Wins to Ignite Joy, Engagement, and Creativity at Work, very positive indeed. And as you can see, the majority of the definitions above are innovative and forward thinking. How sad then for such an upbeat word to take on such negative connotations in the context of our health and well-being. “Your disease is progressing.” Even if the words are never uttered by your doctor, they are floating in the air like a pink elephant in the room.

It all gets so confusing. When I was a child, my mom would say I was regressing whenever I acted younger than I actually was. (Occasionally, I still behave that way and it’s my wife telling me I’m regressing – some things never change.) The point is, I was going backward instead of forward. Progression was a good thing. I was supposed to be acting more mature. Too bad, then, that this word holds such negative implications for us MSers.

Now I sit here looking out the window from the seventh floor of my 15th Street apartment overlooking Third Avenue here in New York City. The view south is now partially obstructed by two ugly luxury high-rise buildings that were erected over the last few years. You can’t stop progress, right?  Though, truthfully, I guess you could move to a different neighborhood, even a state, where buildings do not block your view.

Wouldn’t it be great if, as MS progresses, you could just move to adjust your perspective of the disease?  Not functioning particularly well today? Balance a little off? Move to Brooklyn, overlooking Prospect Park! You’ll get a clearer view of your disease,you’re your overall quality of life will improve. That’s progress.

And so I dream. And in lieu of changing my location to improve my quality of life or functionality, I take the only legitimate action I have available to me: I consume prescription drugs and lots of them. I bring this up now because for the first time in my storied MS life, the insurance company had the audacity to reject a request for I’ve been told is the next best drug option, Rituxan. This after we halted Tysabri following about a year and a half and PML concerns.  Six months of applications and appeals all to get the middle finger. Happy days. Thank you insurance company, thank you state appeals process – for nothing!

Now I am off Tysabri and back on Avonex as the progression continues. Even if I can’t actually feel it, there’s usually something going on in my brain or on my spine. Because I completely trust my doctor, I’ve also added a drug he recommended, something called Mycophenolate, designed to help prevent transplant organ rejection. I realize I don’t have an transplant organ (good news for me!), but whatever works for MS, right? If I were an optimistic individual, I’d say the cocktail of meds I take every day is having a beneficial effect and is at least slowing down the - wait for it, here it comes – progression of my disease.

I hope wherever you are, your progression is slowing too. If you’ve found a way to stop it altogether, please let me know.

Have a great couple of weeks. Stay cool!

Peace,

Marc

marc@empirelifecoaching.com

914-715-9496

MEMORY, LOSS AND KEEPING THE FAITH

“The backward glance is distorted by the lens of the present….Memory distorts memory. Is all memory simply the application of narrative to past events, and is it only human and coherent to do that work?”  Dana Spiotta, Stone, Arabia

When I read the novel Stone, Arabia last year, some passages about memory really grabbed me. The author remarked on how we can never actually remember anything perfectly. Because the narrator’s mother suffers from dementia, she is trying to piece together fragments from her own past. She appears to be saying that we are taking experiences and creating narratives, using words to describe them. To me, that is part of why no two people can ever remember anything exactly the same way. We each possess different vocabularies, histories, and contexts for what we see, hear, and taste. One person’s cold can be another’s hot even when the temperature is 60 degrees.

One of the more complicated aspects of coping with multiple sclerosis is that it can be tricky to put into words precisely what we are encountering. After all, so much of what we are forced to face comes down to the loss of things we once had in the past: of vision, touch, mobility, taste, and so on. To those of us in the know, we have an elemental sense of what is happening, but finding the right words to describe this experience can be woefully elusive. I suppose it can be a little like trying to describe what it is like to grow old. But unless you are going through it, you don’t really know what the experience is like. Mere words can be insufficient to describe what it feels like to live with the disease. Which is part of why the MS Society holds “you look so well” support groups. To the observing eye, there are no symptoms, nothing to put into words. But we know better, don’t we? Worse case scenario: on the inside we can actually be going through hell.

So when we try to describe our symptoms to our doctors in a way that accurately represents the disease, we use words in relation to what we believe “normal” used to be. Beyond the physical aspects of the disease, there are the emotional ones, too: the constant readjustments of our expectations. How do we put into words the aspects of the disease one cannot touch or see: the bitterness, the anger, the frustration that can be a regular part of living with MS?

This most often arises from the “not knowing” what our futures will hold. Unless we are in therapy (been there, done that), we are left to ponder the future of our fates in relation to our pasts. We can have conversations, the words circulating around in our heads, about what we once had, where we are now, and what the future holds for us. Ah, yes, the “future.” I don’t have these thoughts all the time, mind you, but I feel we MSers have them more than “regular” folks, mainly because the future is so uncertain. In what condition will I find myself next year, in five years, or ten years? These thoughts can be quite daunting, even if the future of research and pharmacology looks brighter and brighter.  

What are my limitations? How long will I be able to walk to work, ride my bike, throw a ball around with my kids. I never thought him much of a philosopher, but Billy Joel sang some meaningful words back in the day, “the good ole days weren’t always good and tomorrow’s ain't as bad as it seems.” 

We shouldn’t harp on what we’ve lost and try not to fret about what is going to happen tomorrow. We’ve got to live in the moment and make the best of the time and situations we still have. An old Latin phrase, carpe diem, works best for me: seize the day!

Have a good couple of weeks. Stay cool!

Peace,

Marc

Billy Joel’s Keeping the Faith

http://www.youtube.com/watch?v=U2pU0QJkMck

MS MEMORY AND WHAT I LOST

“The backward glance is distorted by the lens of the present…Memory distorts memory. Is all memory simply the application of narrative to past events, and is it only human and coherent to do that work?”  Dana Spiotta, Stone, Arabia

When I read the novel Stone, Arabia last year, some passages about memory really grabbed me. The author remarked on how we can never actually remember anything perfectly. Because the narrator’s mother suffers from dementia, she is trying to piece together fragments from her own past. She appears to be saying that we are taking experiences and creating narratives, using words to describe them. To me, that is part of why no two people can ever remember anything exactly the same way. We each possess different vocabularies, histories, and contexts for what we see, hear, and taste. One person’s cold can be another’s hot even when the temperature is 60 degrees.

One of the more complicated aspects of coping with multiple sclerosis is that it can be tricky to put into words precisely what we are encountering. After all, so much of what we are forced to face comes down to the loss of things we once had in the past: vision, touch, mobility, taste, and so on. To those of us in the know, we have an elemental sense of what is happening, but finding the right words to describe this experience can be woefully elusive. I suppose it can be a little like trying to describe what it is like to grow old. But unless you are going through it, you don’t really know what the experience is like. Mere words can be insufficient to describe what it feels like to live with the disease. Which is part of why the MS Society holds “you look so well” support groups. To the observing eye, there are no symptoms, nothing to put into words. But we know better, don’t we? Worse case scenario: on the inside we can actually be going through hell.

So when we try to describe our symptoms to our doctors in a way that accurately represents the disease, we use words in relation to what we believe “normal” used to be. Beyond the physical aspects of the disease, there are the emotional ones, too: the constant readjustments of our expectations. How do we put into words the aspects of the disease one cannot touch or see: the bitterness, the anger, the frustration that can be a regular part of living with MS?

This most often arises from the “not knowing” what our futures will hold. Unless we are in therapy (been there, done that), we are left to ponder the future of our fates in relation to our pasts. We can have conversations, the words circulating around in our heads, about what we once had, where we are now, and what the future holds for us. 

Ah, yes, the “future.” I don’t have these thoughts all the time, mind you, but I feel we MSers have them more than “regular” folks, mainly because the future is so uncertain. In what condition will I find myself next year, in five years, or ten years? What are my limitations? How long will I be able to walk to work, ride my bike, throw a ball around with my kids. These thoughts can be quite daunting, even if the future of research and pharmacology looks brighter and brighter.  

I never thought him much of a philosopher, but Billy Joel sang some meaningful words back in the day, “the good old days weren’t always good and tomorrow’s not as bad as it seems.” 

We shouldn’t harp on what we’ve lost and try not to fret about what is going to happen tomorrow. We’ve got to live in the moment and make the best of the time and situations we still have. An old Latin phrase, carpe diem, works best for me: seize the day!

Have a good couple of weeks. Stay cool!

Peace,

Marc

marc@empirelifecoaching.com 

Billy Joel’s Keeping the Faith

http://www.youtube.com/watch?v=U2pU0QJkMck

Billy Joel’s Keeping the Faith

http://www.youtube.com/watch?v=U2pU0QJkMck

THE GREYS OF LIVING WITH MS - A TWIST OF FATE

It seems like everywhere I turn these days I see grey: the erotic novel 50 Shades of Grey is a monster best-seller that Saturday Night Live poked gleeful fun at this past weekend (see below), and Liam Neeson’s film The Grey arrives on video this week. Is it a coincidence then that my mind has been turning around the color grey and its relation to multiple sclerosis? Or some kind of destiny?

Let me begin by explaining that when I was younger (I am 47 now), I found it easier to reduce my understanding of issues and relationships to black and white. One politician was good, and another was evil. If a marriage ended, it had to be one person’s fault, the other the victim; I didn’t have a sense of mutual culpability. It sure made life easier: I didn’t have to analyze or understand the greater complexities of life. 

I believe I turned a corner when my wife’s co-worker’s family was described a few years ago as perfect, devoid of any problems. It just didn’t seem possible to me: how could a family not have problems, how could everyone be perfect? Now I’m not saying I wished this on anyone, but when a divorce recently rattled the family, I wasn’t especially surprised.  Life doesn’t usually spare a family from some measure of pain or adversity. Very few just get off, have a “white” life. After thinking it through, I realized, sure, some have it harder than others, some easier, but generally life is grey (even amid the spectacular color of spring here in the Northeast).

This is a long way of saying that for those of us with MS, life can be greyer than it is for people who don’t have to live with a chronic disease. We get to ask ourselves questions like: Has the disease made me a better person? Is it a gift that has afforded me an opportunity to grow in ways I never would have otherwise? Like many of us these days, I do a fair amount of reading on the Internet and regularly encounter this attitude, one I cannot embrace. There are many people sharing quotes about perseverance, pictures of  kittens and positivity.  On the one hand, I get it: If it doesn’t kill you, it will make you stronger. On the other hand, I can’t get all mushy about a disease that picked me. I played no role in the decision-making process that led to my contracting the disease: it was just, as Bob Dylan said, “a simple twist of fate” (see below). I didn’t choose MS; MS chose me.

The flip side of all the positivity on the Internet is anger about the disease that has changed our lives in so many unexpected ways. But I personally find anger to be a negative energy, counterproductive to the way I want to live my life. Which isn’t to say I don’t get angry about it. I get pissed off, no question. I just cannot let my anger be a guiding principle.

A couple of years ago, an MS friend directed me to an exclusive on-line group for people with the disease. They took pride in saying it was a “unicorn-free zone,” no new-agey optimism allowed. To be fair, the group was a place where people could vent about the challenges they had to face, not a bad thing to be sure. Perhaps I misunderstood the group’s mission, but there was so much negativity and snarkiness that I ended up feeling bummed. Needless to say, I eventually lost interest. Didn’t Woody Allen use a quote from Groucho Marx in Annie Hall to describe his love life, “I wouldn’t want to join a group that would have me as member”? Well, that group anyway.

Unfortunately, we can’t quit the MS club. We each have to find ways within the boundaries of black and white to cope with the challenges brought about by the disease.  I don’t use the word grey in the context of MS to say MS makes life colorless. Not at all. It just makes it even more complicated. The way life would be without the disease but more so.

So keep fighting the good fight. Make every day count!

Peace,

Marc

914.715.9596
marc@empirelifecoaching.com

Bob Dylan Simple Twist of Fate
http://www.youtube.com/watch?v=7-YjEGyaRGc 

50 Shades of Grey/SNL 
http://newsroom.mtv.com/2012/05/07/50-shades-of-grey-snl-saturday-night-live-video/

ACCESSIBILITY ABSURDITY

Accessible: easy to approach, reach, enter, speak with, or use.

 

The above definition is from dictionary.com. I looked it up before I began writing this blog just to make sure I understood the term properly. How often have you seen signs for something that is accessible or even called a theater, restaurant, store, fill in the blank, and are told, ” yes we are accessible,” only to arrive at your destination to discover that they are not accessible at all or only accessible under the most ludicrous circumstances possible? More than once, I have had to navigate through garbage or storage under humiliating conditions to gain entrance to a restaurant. I have gone up or down ramps that made me feel as though my life was in danger, at angles that surely would've impressed extreme sports enthusiasts. I am a pretty easy-going guy and it can take a lot to get my blood boiling, but all I can say is, living with multiple sclerosis has the potential to really raise one's temperature.

Last week, we were sitting on the bench outside of Mud, one of our favorite java joints, enjoying iced coffees in the warm spring sunshine when I felt the urge to use a restroom. As much as I love the coffee, Mud is unfortunately not accessible (an immense step at the entrance). I needed to act quickly. MS and bladders, man oh man. There was a Starbucks on the next block and, since New York lacks public restrooms, I headed straight there. The only problem was, since everyone else uses Starbucks as a public toilet, there was a line six people long when I got there. I remembered that our favorite Ukrainian restaurant, Veselka, was across the street; they have a "disabled" bathroom, so I headed straight over there. Except, my scooter was too big for the space. After a minute or so of trying to force my scooter to fit, I accepted the reality of having to go back to Starbucks and get back on line. Fortunately, a woman who had been right behind me on the line before very kindly let me go ahead of her. Disaster averted!

Last year, I read about a new restaurant in my neighborhood, Redhead's. The review said it was exceptional and, to me, the food sounded altogether appealing: Southern food updated for New York sensibilities. They told me over the phone they were accessible. When Alida and I arrived, there was a step about a foot high I guess I was supposed to navigate over on my scooter (maybe I could fly?). Who in their right mind could think getting over a step like that made the restaurant accessible? I cruise around my neighborhood often and find myself dumbstruck by the amount of restaurants and stores with only a three or four inch lip that could easily be adjusted for a smooth, straight entry. The powers that be, however, never think about a simple adjustment that would make my life and many others like mine so much easier.

They won't get my business, but that's not the point. In a modern city like New York, these issues should not exist. Heck, they shouldn't have to exist anywhere. It boggles the mind when a rinky-dink little deli or drugstore has gone to great lengths to adjust their entrances but a chichi restaurant will leave its entrance untouched and therefore inaccessible. My mom says I should write to the newspapers to let them know about this discrimination and the issues with insurance companies, too (don't get me started on that one). So many indignities, so little time.

One of the greatest shocks I received occurred a few years ago when a classic Hitchcock film was playing at the Ziegfeld, one of the last remaining movie palaces in New York City. Excited about seeing the film, and since I had never been there with my scooter, I called the theater in advance to make sure I could get in. To my dismay, they did not have a disabled entrance nor did they adjust any of their many doors in order for someone like me, or perhaps you, could get in and go to the movies. The ultimate fuck you! Needless to say, it can feel disheartening when simple pleasures in life are eliminated as a result of the clumsiness, thoughtlessness, disrespect, and/or bone-headedness of able-bodied individuals. 

We become especially sensitive to these exclusive situations. I go down beautiful tree-laden streets in historic neighborhoods and become acutely aware of the fact that, even if I wanted to, getting into any of those houses/buildings is an out and out impossibility. It sure makes me feel grateful for the ramp they built into my building a few years back. And I shudder to think about what things must have been like in the years before I required a scooter. Fortunately, these days inaccessible buildings are the exception rather than the rule. 

And while New York is one of the better cities when it comes to corners that have been adjusted for scooters and wheelchairs, there are still those moments when one is scooting along at a good clip and you suddenly come upon one of those old foot-high corners that has not been adjusted. It feels like a slap in the face. You don't have to think too hard about "what if" I accidentally went flying off such a corner.  One thus becomes used to memorizing the problem corners and adjusting routes accordingly. Except when you forget and get stuck, forced to go back a block and off the curb of the previous corner.

So what is the moral of the story? We need to be resilient; we need to be strong in the face of adversity and inaccessibility. Because we never ever know when it's going to look us straight in the eye. I don't know about you, but getting out there and facing and overcoming these everyday challenges, however miniscule, frustrating, or annoying, is still a darn good reason to get up and out the door in the morning. It sure beats staying inside all day wondering about "what if?"

Have a great couple of weeks.  I hope you can enjoy the spring wherever you are.

Best Wishes,

Marc

Marc@empirelifecoaching.com

Bonus information for New Yorkers:

FYI, this is what I came across at ehow.com regarding rules for restaurants that make the issue even murkier:

“Where problems arise for disabled, and specifically wheelchair-using patrons is in buildings constructed before 1990. The ADA requires what has come to be described as ‘reasonable accommodation.’ What may seem reasonable may or may not be realistic, and, try as they may, some building owners are unable to provide full accessibility.”

Read more:

'Wheelchair Accessible' New York City Restaurant Guide | eHow.com http://www.ehow.com/about_4691739_new-york-city-restaurant-guide.html#ixzz1t0vfwJ8G

Also in Metropolis Magazine regarding restaurant accessibility, from two year’s ago:

“This is all to say that it’s a somewhat complicated process, designed to accommodate a variety of interests. And while the vast majority of existing city housing does not have to meet accessibility standards, anything built in the last twenty years or so, and any future construction, does.”

Read more:

http://www.metropolismag.com/pov/20100304/accessibility-watch-navigating-new-yorks-building-code

THE PROBLEM WITH ELEVATORS AND IGNORANT PEOPLE

This is a blog in two parts, though you will see they are thematically related. Needless to say, the adjustments we often have to make as a result of living with our disease can be head-spinning!

PART I

Remember the Peanuts movie from the ’70s, Snoopy Come Home, where Snoopy kept trying to go to places like the beach, the park, the library, etc.? And every time, he encountered a sign that read, and a voice that intoned, “No Dogs Allowed.” (see YouTube clip below). That is often the way I feel lately when I go places where able-bodied people can climb stairs and reach their destinations with relative ease. When an elevator is broken, as was the case several times recently, I felt a little like Snoopy appeared in the movie: angry, annoyed, and agitated. 

Two weeks ago, I went to the gym to discover the elevator was out of order, which meant I could not get to the second floor where all of the Nautilus machines that are important to my regular workout are located. No elevator, no workout. Readjustment again, which is kind of like living with MS in a nutshell.

Then on Sunday I went over to the movie theatre early in the day to buy tickets for a late afternoon show of The Hunger Games. I’d loved the book and was enthusiastic about seeing the well-reviewed film. When I arrived, the fellow by the automated ticket machines pointed to the broken elevator. Well, those plans went out the window pretty quickly. I realize it’s not personal, but there seems to be a sign only we can see: "No Crips Allowed."

PART 2

One of the perks of being disabled and using a disability device is you are entitled to discounts to theater, some concerts, and other forms of live entertainment. So last week, Alida and I saw Death of a Salesman on Broadway. Typically, when we go to a show, there is a space where a seat was removed that allows me to park my scooter and stay there throughout the show, no problem. Well, Death of a Salesman is running in an ancient theater, and the seats have not been adjusted to accommodate mobility devices. As a result, I had to transfer to a seat. This meant: I also had to navigate two small steps, unexpected but manageable.

This left the issue of what to do with my aisle-blocking scooter. Let’s just put it this way: you’d have thought I was the first person to ever enter this theater in a scooter or wheelchair. After I got into my seat, the couldn’t-care-less usher pointed to a space behind the back of the orchestra seats and told me to park it there, which Alida did. After we were finally settled in, another theater staff member approached me to say (in a not particularly sensitive or friendly way) that I couldn’t leave my scooter where it was; it needed to go all the way down the hall to a space on the side of the orchestra. Well, we flat out refused despite the guy’s forcefulness. It just didn’t seem right. Eventually, the kind house manager showed up and offered to move the scooter for us, which we greatly appreciated. This is what should have happened in the first place! 

But the story doesn’t end here. At intermission, another equally clueless usher told me I needed to move the scooter yet again because it was blocking the exit door. At least we could say the manager put it there. All along, there was a feeling that everyone thought the disabled person (me!) was able enough to move his own disability device and then walk back to the seats. Like I was just being difficult to piss them off. Seriously? Talk about ignorant and disrespectful. What would they have done had I been traveling solo? I shudder to think. I’m lucky to have been with Alida, but she (or anyone else I happen to be with) shouldn’t be forced to move my scooter because of an organization’s incompetence and poor planning (which I’m guessing is a violation of ADA).

All of this goes to show you that things are rarely as straightforward as we want them to be. We constantly adjust and adapt to circumstances beyond our control, scenarios able-bodied people never have to face. Sometimes it is a wonder we even get out of bed in the morning. And yet we do. Because as problematic as life with MS can be sometimes be, it’s the only one we’ve got, and there isn’t a doubt in mind that it is worth living.

By the why, Death of a Salesman was excellent, Philip Seymour Hoffman as Willy Loman superb. You’re going to have to wait for my response to The Hunger Games (the elevator should be fixed by now!).

Next time: when the word “accessible” doesn’t mean “accessible.”

Have a great, productive couple of weeks!

Peace,

Marc

marc@empirelifecoaching.com

Snoopy Come Home:

http://www.youtube.com/watch?v=WUMAECmL6WA&feature=relmfu

MS, FRIENDSHIP AND THE TIES THAT BIND

So many faces in and out of my life

Some will last
Some will just be now and then

Life is a series of hellos and goodbyes

I'm afraid it's time for goodbye again – Billy Joel, “Say Goodbye to Hollywood”


One of the most significant aspects of coping with the effects or mere fact of multiple sclerosis in our lives is the reaction of the people when they learn we have it. The response from individuals close and far can vary widely. I’ll never forget when I was at my last job, following a day out sick as a result of a high, debilitating fever, I decided to tell my boss (the woman who hired me about six months before) that I had MS. I hoped she would be sympathetic to my situation.  Instead, she made it about herself ("How could I do this to her?") and was shocked that I hadn’t been forthcoming in the first place. Our relationship had always been turbulent, but after that incident, there is little doubt in my mind that she treated me differently, in a negative way. Unfortunately, we always have to worry about how people in all areas of our lives -- supervisors, colleagues, friends, relatives, neighbors -- will respond to discovering our "dirty little secret."


Many years ago, shortly after I was diagnosed, a friend from college with whom I had always been very close reacted to news of my illness with shock and confusion. My wife is convinced he couldn't cope with the fact of my disease. Our relationship deteriorated quickly after I told him about it. Though we'd been best friends for many years, we fell out of touch very quickly thereafter, despite his living just a few hours away. Clearly, physical distance was not why we went our separate ways, a fact that still pains me today.


I’ve been pondering the general nature of friendship as a result of recently reconnecting with another old college friend via Facebook. When we got together for lunch the other day, we picked up precisely, and reassuringly, where we had left off some 24 years ago. I was extremely grateful that my obvious disability didn't freak him out (I did prepare him on the phone, but still). Despite my general comfort living with the disease, you never know for sure when it is safe to divulge. And so much depends on who you choose to tell; from my personal experiences, some people can handle this news; others, not so much.


Those of us living with MS have to accept whether or not to share a unique, often damaging, secret with friends, family, co-workers, even if we "look so well." For many of us, it can feel as though we are, as the cliché goes, "circus clowns smiling on the outside but in tears on the inside." By letting the metaphorical cat out of the bag, our vulnerability reveals itself. We are faced with choices about who we can and cannot tell about our disease; in the process, we learn important lessons about ourselves. Still, it can also be liberating to find out who our true friends really are. And we can make new friends, too, by joining a community of MS patients either locally or via the internet. Whatever would we do without the electronic superhighway?


Enjoy the spring. Keep fighting the good fight.


All my best,


Marc
marc@empirelifecoaching.com
914.715.9496

"Say Goodbye to Hollywood"
http://www.youtube.com/watch?v=47PtUvHIQpk

VIAGRA: SECRET REVEALED

“Medicine sometimes snatches away health, sometimes gives it.”
 - Ovid 



Multiple sclerosis is the disease that keeps on taking. It takes away our mobility, our basic functions, touch, feel, bladder control, and diminished sensations.  We take medications to treat the symptoms, to prevent the progressive disease from progressing.  Sometimes, the side effects of these drugs can be more severe than the disease itself.  Oh man, when I was on steroids (prednisone, dexamethosone, oral, intravenous), it really sucked: the sleeplessness, the withdrawal, the highs, the lows, the feeling that I was being electrocuted.  We can invest so much faith in these medications, hoping upon hope that maybe, just maybe, they'll be beneficial.  I just finished a year-and-a-half tour with Tysabri.  Did it work or didn't it?  I couldn't say for sure, but my doctor was concerned about PML (the scary brain infection).  Onward ho to Rituxan.



Occasionally, we get a little something back, as evidenced by the following experience: When it comes to intimacy, the disease has caused what is, from my understanding, a not uncommon effect on my sexual function.  What is the number they name in the ad for men who live with the issue, MS or no?  20,000,000 men are using it, this little pill called Viagra.  Add this one to the long list of medicines and treatments I never expected to be using.  The affliction it treats is commonly known as ED (erectile dysfunction).  I didn't know the official name for it until I heard an ad on the radio a while back talking about a remedy for "ED."  The reason I am going public with this secret is that I recently noticed an uptick in over-all function (not just down there) whenever I use Viagra.  I even notice a little more energy the next day at the gym.



So, being the modern guy that I am, I went on the Internet and Googled "Viagra MS" to see if there is anything to my little theory and, lo-and-behold, what did I find but the results of a study on mice published last year describing the benefits of Viagra for restoring function.  Read about it here: http://www.sciencedaily.com/releases/2011/05/110519090354.htm.  Of course Stu at Stu's Views and MS News was on this one last year shortly after it was published: (http://wwwmsviewsandrelatednews.blogspot.com/2011/05/viagra-could-reduce-multiple-sclerosis.html). Beginning this week I'll be taking a generic form of Cialis, a daily pill that contains the same active ingredient (tadalafil) as Viagra to see if I can get the benefit all the time.  What this means for women with MS I am not entirely sure.  



My other little secret: I am tapering off Baclofen.  Why, you ask?  Well, I got thrown out of whack when I slept through the night.  Usually, I take a Baclofen along with Tizanidine and Clonozepam when I wake up in the middle of the night.  Instead, I took the combination when I woke up.  Five hours later I went to physical therapy and had the best session I've had in months, since last summer.  Crazy, right?  Then I remembered the reason I stopped taking Baclofen many years ago: It made my legs heavy and, thereby, more difficult to walk.  I will live with a little more spasticity if it might make it easier to walk.



Here's the thing: we're always hoping to somehow get better, even completely recover, as unlikely as the possibility can sometimes seem.  Our anxieties can interfere, too. We may be willing to try anything, hoping to improve our condition – or nothing at all, out of fear or denial.  We each have our own ways of coping.  Myself, I've always kept an open mind. Hey something's got to work, right?  And I am fortunate enough to have a doctor I can trust like a brother.  But in the end, we must be our own best advocates and remain aware and informed in order to make decisions that keep our best interests in mind.

Be well,

Marc
marc@empirelifecoaching.com

IT'S NOT YOUR FAULT, IT'S NOT MY FAULT


"Do not think of your faults, still less of other’s faults; look for what is good and strong and try to imitate it. Your faults will drop off, like dead leaves, when their time comes."
- John Ruskin, English writer and critic of art architecture and society (1819-1900)



Many years ago, when I was still part of the 9 to 5 world, I was going up in the elevator to work when a woman, a complete stranger, asked me why I was using a cane. Usually I am uncomfortable with such bold invasions of my personal space. However, on this occasion, I told her directly, “I have multiple sclerosis.” Her response surprised me: she said, “it must be so hard for your mother. I know because I have a child with a disability. We feel so guilty for bringing you into the world.” Wow - not the response I had been expecting.

My disease can be extremely difficult for my mother to cope with. She often acts so responsible because of the monumental challenges I face on a regular basis. 

On the one hand, I am fortunate to have a person in my life who cares about me so much. My mother is wonderful, a considerable part of why I am the strong, determined individual I am today. But her concern has its own consequences that I am certain she never intended. While we have a mostly honest, open relationship, we each protect one another. For instance, when I am facing some of the most severe difficulties of my disease, I never want to tell her all of the most painful details because I know she’ll end up worrying even more than she already does.

Conversely, I know she has problems of her own (her husband, my dad, passed away last year; and she has chronic back and stomach troubles, which she never fully reveals to me, among other issues). She is primarily concerned with preventing me from worrying or stressing more than I have to. She realizes stress can be a factor in the evolution of MS, and she doesn’t want to say anything to adversely affect me. While I understand why she does this, I don’t want to be protected just because I have a disease.


 
If the finger of responsibility has to get pointed at anyone, I suppose it should be pointed at myself. Back in high school when I was a senior, I had a girlfriend who was older than me and a freshman in college. I visited her in the fall of her first year away and found out she had been cheating on me. The shock of the situation caused me to sleep in the bed of one of her friends who had not washed his sheets in weeks, during which time he had mononucleosis.
 
Many of you know about the triggering affect mono can have on multiple sclerosis. When I look back on this time and the fact that I, too, came down with mono shortly thereafter, it seems especially clear how the disease was launched in my system. So I can blame my ex-girlfriend with a friend whose bed I slept in back then and take some responsibility myself, but the reality is that I developed MS truly and somewhat randomly. I was predisposed to it anyway, right? It has been the hand I’ve been dealt. I have come to terms with it, for better or for worse, over the course of living with it for over 20 years. It’s still amazing to think: Wow, one simple, innocent moment can have such a devastating impact on the rest of one’s life.

  

As much as I ask my mother to stop worrying, and convince her I am going to be all right, she just can’t do it. And I feel guilty, too, for having this impact on someone I care about. So, mostly out of love, we protect one other from the worst aspect of each other’s lives. But, truthfully, the worst facts do get revealed. They are unavoidable. Even though we don’t want to hurt the ones we love, we can't live in complete and utter denial and secrecy even if we want to. The truth always wins out.



Without question, living and coping with multiple sclerosis can affect everything, especially our relationships. It ends up shaping our lives in unexpected and mysterious ways. None of us asked for this, and so we are constantly adjusting, physically and emotionally. Some relationships suffer. One of my best friends from college drifted away, unable to cope with the effects of the disease on my body. His loss. We learn who our true friends are. And if we keep ourselves open, the disease can also introduce us to people and experiences we never would have expected. I have friends now, as a result of the disease, who are very important in my life. With that said, just because a person has MS, doesn’t mean they will automatically be compatible with you. People who are annoying are still going to be annoying.



So my mom and I will continue our dance, the one brought about by MS. And we will adjust, as we have over the course of living with it, to the physical and emotional hardships we face, part of a family who possesses the facilities to support one another and, most of the time, to navigate the complex challenges raised by the disease.

Thanks and be well,

Marc
marc@empirelifecoaching.com