Traveling With MS as My Companion

image

I love to travel.

While I have never traveled outside the US, I have visited most of our states, and most of our major cities. I enjoy getting away, seeing other parts of the country, and appreciating how vast and beautiful our land is. When I am on a plane, I love looking out of the window seat at the vast expanse passing underneath on a clear sunny day, or witnessing the spectacle of flying over a city at night, taking in the lit landscape like a young boy gazing at a glorious Christmas tree. As an experienced air traveler, I have learned a lot about what not to do in terms of booking, connection times, how long it might take to get through security, and things of that nature.

Over the last few years the amount of traveling I have done has reduced significantly, not because of my MS, but because the opportunities aren’t as great. The only accommodation I made because of the MS was to arrive at the airport earlier and to give myself more time between connections, because rushing though the airport to make the connecting flight is impossible. Aside from those two changes, my game plan when it came to negotiating the airport, and general attitude regarding air travel, had not changed, until today.

Subconsciously, I knew that when the symptoms slithered into my knee, it was a game changer. After all, I have documented that it is harder to walk, and that my balance is significantly worse in previous posts. I was curious how or if it would change my airport experience in the days leading up to this morning’s excursion from Connecticut to Nashville, Tennessee. In my self proclaimed state of denial and stubbornness to plow ahead and not worry about the consequences, I vowed not to change a thing regarding my airport game plan in advance of this trip. Then, my wife asked this question, although it was really more of a statement: “You’re getting wheelchair assistance this time, aren’t you?”

When I booked the flight months ago, I declined that option, perfectly content to muddle my way through security, and be the first on the plane. But she wouldn’t let it go, so I thought about it and decided, why not? But honestly, I only relented because of the two braces that span my toes to upper thigh, and the hassle they might present going through security. So screw it! If it makes getting through security easier, I could temporarily swallow my pride.

I am so glad I listened to her, for a number of different reasons.

The first thing you need to know about our airport, Bradley International, is that it is not huge. Early morning, which is when I arrived, is the worst time to be there because of all the business travelers getting out on the first flights of the day. And this morning’s crowd was no exception. In fact, it was probably the busiest I have seen it in years. Lots of people, and lots of long lines.

But when I entered the airport today, I knew something was different. Pulling the rolling suitcase behind me was infinitely harder because I had to zig zag through the mass of people, and with my balance, I don’t zig zag very well anymore. After I gingerly made my way to check my bags and drag them to the X-ray machine, I parked myself on a chair, and gratefully waited for the wheelchair attendant to arrive.

The first thing I noticed after I requested wheelchair assistance was that my boarding pass was marked TSA pre-checked, which allowed me to bypass those long lines. As we weaved our way through the throng, I was happy that I didn’t have to get caught up in that mosh pit of humanity.

Going through security was easier for a couple of reasons. The first was that even though they had to wand me, given my leg was encased in metal, I didn’t have to fret over my wallet, watch, and other items being left unattended, because my wheelchair escort grabbed them for me while the TSA agent was doing their thing. The other reason was that, in my opinion, the TSA rep was, well, nicer. He did his job quickly, and got me out of there faster than the previous times I went through the process without the wheelchair. Maybe it was my imagination, but I felt a lot of empathy.

I didn’t really need the chair to get to my gate after I was through security, but I have to admit it was nice not having to walk that distance. This was further illustrated when I got to O’Hare, and walked to my connecting gate. I wasn’t in a hurry, and I could have waited for the wheelchair to arrive, but I chose not to. The trek took a very long time and I felt something I never experienced in an airport before: vulnerability.

You see, people inside an airport are clueless. They wander around, either looking at their phones, looking for their gates, looking for something to eat, somewhere to sit, or rushing through the crowd like a running back picking a hole to run through, and they are all oblivious to who or what is in front of them, in back of them, or around them. That is not a good feeling for someone with balance issues, so I simply steered to one side of the terminal and stopped or slowed down when someone threatened to invade my orbit, using my cane to secure my space if necessary. It felt like walking through a mine field.

Fortunately, the agent at my connecting gate told me a wheelchair would be waiting for me in Nashville, so I knew I wouldn’t be tempted to hoof it on my own when I arrived. It was a good thing too because while there were nowhere near as many people as there was at O’Hare, the walk was just as long, had more inclines, and the floor was carpeted, which tends to grab my foot more.

By the way, is it me or does it seem that the airport wheelchair attendants tend to be older, or smaller of stature? While I am average concerning height and weight, I am certainly not a lightweight, and felt bad for the two that got me because they had to strain a few times to get me where I needed to do.

Another thing that was different is that getting in and out from the window seat for a bathroom break during the flight was much harder, having to grab and hold onto the head rests on the seats in front of me to stay upright. Maybe I am going to have to get aisle seats from now on. And once I got to the aisle, the journey to the bathroom felt a lot more wobbly than it ever used to, and the aisle felt narrower. My hands were always on the seats on each side of the aisle because if we hit unexpected turbulence, I know I would have fallen across someone’s lap. I never felt that way before.

Getting on and off the bus that served as the shuttle to my hotel was harder, and as we approached the Opryland Resort, the bus driver described it as 57 acres under one roof and instead of thinking that was really cool, it seemed like another obstacle to contend with.

The fact is, it has been a year since my last trip, and everything is harder. When I was at the same meeting in Vegas last year, everything was just as spread out as it is here, and there was as much if not more walking inside the facility. But the difference between this year and last, is that last year I viewed that reality with a “no problem” attitude. This year’s attitude is more like “oh shit!”

I will never get on an escalator again with luggage in tow because I have one hand on the cane, another of the luggage handle and, unfortunately, no third hand to grab onto the escalator rail. Not a smart move for someone with balance issues. Nothing bad happened, but I would be lying if I said I wasn’t nervous. Why I didn’t look for an elevator is beyond me. That won’t happen again.

Now that I am here, I am sure I will enjoy my time in Nashville, but I know there be a lot of walking and standing, and I suspect that will take more effort than it used to. Then I will have to endure the return trip home. When I reflect on this trip once I am home, I doubt it will squelch my desire to travel again, but perhaps I will have to be more selective regarding where I travel to, or when my flight departs.

The one thing that I do know is that MS has definitely invaded the ease in which I used to travel, and that with time this will become harder. Perhaps a point in time it will come where traveling will become impossible.

And that would be a very sad day.

Balance

Balance

 

If you look up the word balance in the dictionary, you will find a variety of definitions and meanings, but there two in particular that interest me the most.

The first one, which applies to me specifically (and perhaps many of you), concerns physical equilibrium: an even distribution of weight enabling someone or something to remain upright and steady.

Of all the difficulties MS has presented, this one has been with me like a shadow from the beginning. At first, the shadow was small and barely noticeable. Now it is large and long, like those that  trail you when the sun is low in the sky towards the end of the day. This has also provided the biggest challenge I’ve had to deal with over the last ten years because, slowly but steadily, my balance has become more tenuous.

In what seems like a lifetime ago, I was a member of my college’s modern dance company. My motive for joining this group during my freshman year was to become more flexible and stay in shape for the upcoming baseball season (and to meet girls, I must confess), but I learned to enjoy the movement and creative aspect of the art, and stayed with the group through my senior year. During this period, I learned a lot about body mechanics, and this knowledge has become invaluable as my balance has eroded. One thing it did, although I didn’t realize it at the time, was teach me how to fall and roll without hurting myself. Needless to say, that has become a very useful skill. I also learned the secret to staying upright.

Marcy Plavin, our company’s director, always urged us to “find our center,” primarily because it provided a better form on stage and made our movements crisp and clean. Now, staying grounded in my center is what allows me to avoid crashing to the ground when my delicate balance is disrupted.

In general terms, my “center” is that spot just above the middle of the pubic bone, and I try to always keep my weight focused on that single spot. This isn’t an issue when I’m on flat terrain, because my body isn’t tilting in any specific direction, and my weight naturally settles there. It’s a different story, however, when I’m on terrain that is sloped, slanted, or flat but bumpy.

First of all, if my foot catches something, regardless of the terrain, it’s a recipe for disaster if I’m not aware of where my center is. Should I lurch forward, I can, with the help of my cane, quickly reorient myself and reestablish my center. As a result, my cane, which was once something I used occasionally, is always in my hand outside of the house. Otherwise, gravity will take over in these situations. I also need to be constantly aware of how my body is positioned, and instinctively react the moment my balance is compromised.

What is weird and infuriating, is what sometimes happens when I’m not moving.

If I’m on flat terrain and allow my mind to wander, I can sometimes stagger sideways if I unconsciously lean to my right. I’m sure this looks bizarre to anyone who witnesses it. They’d probably think I was hopelessly drunk or on something. While this rarely occurs, it does happen.

Most of the dangers that await me are outside of my home, and my yard is a prime example.

My house sits on a hill, and the downward slope has become increasingly difficult to navigate. Part of it because my foot drop has become so bad, that my foot is constantly getting stuck in tufts of grass. As a result I’m literally taking one step at a time, like an inch worm, when I’m out there. But I’ve also had occasions where I’m standing still, not moving at all, and still almost keel over. This used to happen only when the downward slope was on my weak side (the right), but I learned to manage this by transferring the cane to that side to have something to hold me up if I felt myself tipping in that direction.

Recently, going up a particularly steep grade has become treacherous. I have to force myself to lean forward when the slope is behind me because if I don’t, I can sometimes tilt backwards. Should this occur, it is the one and only scenario where I can’t recapture my center. This has occurred a few times, particularly around our pool that sits on a mound that has a short but steep pitch. When I’ve felt myself losing my center while standing on that slope, panic instantly sets in for the briefest of moments because I know that if I reach that point of no return, I will tip backwards, I won’t be able to brace my fall or protect myself, and could really wind up getting hurt. Fortunately, that hasn’t happened yet.

And this is during the summer, when the ground is warm and dry. I hate to wonder what the winter will be like.

To illustrate how silly this has become, even the act of correcting my posture, particularly if the motion is quick, sharp and I’m not holding onto a cane, or aren’t near a wall I can brace myself against, can cause me to stagger backwards.

The bottom line is that MS has stolen my physical balance, and has made it something I constantly have to battle to achieve a stalemate. It is the reason why negotiating stairs requires my full attention and concentration. It’s also the reason why the simple act of walking and standing has become a competitive sport.

The second meaning, which applies to us all, concerns mental and emotional steadiness: a condition in which the competing elements of our life are in equal or correct proportion.

This type of balance is the most difficult for me. Specifically, where is the line between being smart and taking care of myself, and giving in or giving up? Where is the line between between being cool and rationale about the disease and its future implications, and focusing too much on them and panicking? Is it better to stick your head in the sand and not worry about the what-ifs until you’re forced to, or to always think about them and plan for their eventuality. Do I need to concern myself with the prospect that all the drugs I’m taking could potentially shorten my lifespan, or is it better not to think about that at all, to focus instead on the quality of life, and how things are in this current moment?

I have my own answers to these questions and navigate according to that compass. I think I do a good job of maintaining an even emotional keel, and not get too high or too low. One could argue that I don’t take my condition seriously enough, but that’s how I roll.

What I  struggle with the most is the proper balance between sharing the fears I do occasionally have with my family and loves ones, and keeping them  to myself, which is my typical MO. After all, there isn’t a thing they can do to improve my condition, and sharing too much might unnecessarily worry them more than they already are.

But is that being selfish? Is it better to let them in on the secret that I am sometimes afraid of  where all this might lead? That I’m terrified of potentially living in a body held prisoner by this relentless beast, and of having to become completely dependent on them for everything? The thought that one day I might need help getting dressed, eating, bathing or going to the bathroom is my skeleton in the closet. Honestly, that isn’t living, it’s existing, and I don’t want any part of that. That, and the possibility that my condition will become a financial sinkhole that will destroy our financial security, is a cross I don’t want to bear.

I don’t obsess about these things, but they exist. I don’t dwell on them because doing so would destroy that emotional scale, tilting it heavily in the wrong direction. Maybe that’s why I try to keep them at arm’s length, in a blissful state of denial. I own this and keep it to myself because emotional balance is a very delicate thread. One unfortunate tug could unravel everything.

And that doesn’t help anyone.

 

For those of you who follow the blog, I will be away on a business trip next week and may not be able to submit what up to now have been weekly posts. Expect the next post to appear in two weeks

 

Is it Me?

pexels-photo-356079[1]

It is me, or do people you don’t know very well say “I’m sorry” if they ask what is wrong with (fill in the blank – with me it is my leg) and you tell them you have MS?

Is it me, or do the “I’m sorry” people end the conversation immediately, and try to discreetly move away as quickly as possible?

Is is me, or do you find all that annoying?

Is it me, or are more non disabled people using the handicapped toilets in public restrooms? Boy, does that piss me off (no pun intended). And when did being a large person become a disability?

And speaking of bathrooms, is it me, or does it seem like you are as far away as possible from the nearest bathroom when you need one and are at work or in a public place?

Is it me, or do more non-disabled people park in handicapped parking spaces than before? Either that or I happen to notice it more because when it does happen, the next available spot is a long walk from where I need to go.

Is it me, or do you hate the term “handicapped”?

Is is me, or do you have a greater awareness of other people who have a disability of some kind? I sure hope it isn’t because there are more of us than ever before.

And speaking of awareness, is it me, or are you more aware of your surroundings since you were diagnosed? I have to be, especially when there are a lot of people around, because one mistimed bump or stray cord laying across a floor might create an embarrassing fall.

Is it me, or do you find people going out of their way to open a door for you in a public place?

Is it me, or does that annoy you? Listen, I appreciate the motivation behind the gesture, and there are times, like when my hands are full, that I am happy for the help. But I’m not an invalid, and like to fend for myself most of the time. Is that being overly sensitive?

Is it me, or are you paying a lot more attention to healthcare politics than ever before?

Is it me, or are you more aware of your insurance benefits, and all the rules and regulations regarding getting services approved for payment, than before you were diagnosed? (Confession: this is a cheat question because in my line of work I have to know all this stuff. But I need to fill the page, and thought it was an appropriate question.)

Is it me, or do your parents (if they are still alive, or were alive after you were diagnosed) treat you like a little kid because of your disability?

It is me, or has your diet become a lot more important than it used to?

It is me, or does your body ache more when you get out of bed in the morning than it did when you went to sleep the previous night?

Is it me, or has the amount of medication you’re taking increased exponentially since you were diagnosed?

Is it me, or do you not bother to read all the literature that comes with those drugs? I typically don’t, and never have, because reading it can make you think the stuff you are about to take will cause something a lot worse than what you have. Aren’t lawyers wonderful?

Is it me, or do you not fully understand why some of the stuff you are taking is supposed to work?

Is it me, or do you discover that the stuff you are taking actually does work, but only after you stop taking it?

Is it me, or does it seem that most, if not all, of the options available to ease your symptoms involve pharmaceuticals?

Is it me, or do you appreciate friends and family more since you were diagnosed?

Is it me, or are there a lot of things you used to fret over that are no longer important?

Is it me, or did you begin thinking about your mortality much sooner than you could have imagined?

Is it me, or did going to the bathroom become a much bigger production than you thought possible?

Is it me, or did going down the stairs become potentially life-threatening?

Is is me, or does the same thing apply to taking a shower?

And since we are on the subject of hygiene, is it me, or can you no longer wash the bottom of your feet?

And, is it me, or do you not even think about taking a bath anymore because you won’t be able to get out by yourself? Or because of what the heat of the warm water might do to your symptoms?

Is it me, or is condo-living starting to sound pretty good?

Is it me, or has walking on a snow covered sidewalk, driveway, or parking lot, become like walking on a tight-rope, or in a minefield?

Is it me, or do you only fall when you aren’t paying attention?

Is it me, or do you want to crawl into a hole and disappear when this happens in public?

Is it me, or can you gain weight more easily than you used to?

Is it me, or do steroids make you ravenous?

Is it me, or do you bleed more easily from all the drugs you take?

Is it me, or were you resistant in the beginning to accept help because of the misguided notion that you would be giving up your independence?

Is it me, or has that shit stopped?

Is it me, or do you think that your spouse and kids were somehow cheated because of your disability?

Is it me, or do you feel profoundly guilty that you can’t do as much around the house as you used to, and your spouse/family have to pick up your slack?

Is it me, or are you doing more than you probably should because you try to minimize the slack they have to pick up?

Is it me, or has daily life become a lot more expensive since you were diagnosed?

Is it me, or do hallways seem overcrowded when another person enters your space?

Is it me or do you no longer walk in the middle of a hallway? I’m always off to the right side, hopefully with a handrail or a wall within easy reach.

Is it me, or are airports a lot more intimidating?

Is it me, or does it take you longer than thirty seconds to get into a vehicle?

Is it me, or do you avoid support groups. I think I don’t go to them because I don’t believe I’m that bad off, and seeing others who are would scare the hell out of me. It’s that denial thing I keep talking about. Who knows, maybe I’d be pleasantly surprised.

Is it me, or did you become a expert on all matters related to MS within a very short period of time?

Is it me, or isn’t a lot or this really comical?

Is it me, or doesn’t a lot of this really, REALLY suck?!

 

FYI: One of my readers, whose mother has progressive MS, started a company, in part to  help her mom stay independent and as safe as she possibly could, with help, of course. She sent me a link ( http://www.helpmedicaldevices.com ) to the company. I checked it out. While it lists a lot of stuff that might be better suited for frail seniors, there is also a lot on the site that people with MS-related mobility issues could find helpful, so I thought I would pass it along.

 

 

 

Diet: Crossing the Rubicon

tape-fork-diet-health-53416

I need to lose weight.

For the last several weeks, I have been trying to watch what I eat, and this got me thinking about MS diets. Shortly after I was diagnosed, I asked a naturopath if she had any recommendations regarding a diet that was good for MS, and she responded by handing me a piece of paper that had a number of recommendations.

Among those was that I eliminate all milk and dairy from my diet, most breads and grains, all red meat, and high fat foods, meaning snacks. Alcohol was frowned upon as well. It was so onerous and restrictive that I tossed it in the garbage because there was no way in the world I was going to subject myself to that.

Back then, I was still fairly mobile and active. I was happy with my weight and was in fairly good shape. I already ate a lot of fruits and vegetables, which was strongly recommended, didn’t eat a lot of red meat or a lot of high-fat foods, and wasn’t a big bread guy. As far as I was concerned, my diet followed a lot of what that sheet of paper recommended, so why bother with anything new?

Now, as I’ve gotten older and have become less active, what I eat has become more important. Not because of my symptoms or progression, but because it takes much more effort to drag this carcass around than it used to. So losing a few pounds to lighten the load makes all the sense in the world.

I’m not large by any means, but the sad reality is that the numbers staring up at me from the scale have gotten uglier, are getting close to a number I can not tolerate, and my clothes have become a tad snug. It feels like I’m trying to fit seven pounds of sugar into a five pound bag, and I don’t like that. I also hate the idea of having to buy more clothes because I don’t have the willpower change this situation, and that is usually all the motivation I need to start losing weight.

But I digress.  It has been many years since I discarded that sheet of paper, so before I took the weight loss pledge, I went back on line out of curiosity to see what kind of MS diets exist, and whether any of them would help me lose weight and help my symptoms in the process. While I am sure what follows is not an exclusive list, this is what I found:

The Paleolithic (Paleo) Diet:  A high protein, high fiber diet, similar to those of our prehistoric ancestors, which is why this is also known as the Caveman Diet. I’m not a huge protein guy, so let’s see if there is better fit.

Wahls Diet: Contains some of the Paleo diet, but eliminates all grains, legumes, dairy and eggs. Not for me.

Gluten Free Diet: I think this one is pretty well-known and self-explanatory. We’ll just move onto the next one because I’m not ready to go there.

The Swank Diet: A low fat diet that eliminates all red meat. I don’t think so.

Mediterranean Diet: A low fat diet that emphasizes fruits and vegetables, monounsaturated fats (like olive oil), fish, beans, nuts and whole grains (foods rich in omega 3 fatty acids), limited amounts of red wine and dairy. Now here is something I could easily do, primarily because I already follow most of this, except for the fish part. But will it help me lose weight?

As I was looking this stuff up, I noticed a link that listed seven foods someone with MS should avoid. Those were: Saturated and Trans Fats (thanks for being specific) cow’s milk, sugar, sodium, gluten and refined grains. Bland, bland, bland.

To complicate matters further, information provided by the National MS Society (see https://www.nationalmssociety.org/Research/Research-News-Progress/Diet ) implied that many of the recommendations I’ve already shared are either scientifically inconclusive, or that more research is needed.

As you can see, one diet says do this, and another says no, don’t do that. They contradict one another, so no perfect “MS Diet” exists, which shouldn’t be surprising. After all, while we may experience similar things, everyone different is in terms of our symptoms and progression. Certain drugs work better for some than for others, and I am sure the same applies to diets.

Besides, diet is only one component of a comprehensive health regiment we need to embrace. Getting enough sleep, regular exercise, not smoking and avoiding stress (more on that in a future post) are equally important.

I fail miserably on the sleep front. I wake up too early in the morning, and go to bed too late at night. It is almost 10:15 PM as I’m writing this, and my alarm is set for 4:45 AM. You can do the math, and this is a typical weekday evening for me.  The weekends are better, but don’t compensate for the 5 to 6 hours I get most weeknights. I get scolded a lot for this egregious habit, but this is a routine I developed a long time ago, and habits are hard to break.

Ditto for regular exercise. I have a wonderful piece of exercise equipment in my cellar that I spent big bucks on a few years ago, because it was the only item that would work my entire body that I could actually use. I did use it frequently in the beginning, but that routine was soon interrupted for some unimportant reason, and I have never gotten back onto the wagon.

I don’t smoke, so at least I’m doing something right.  Some will say that I shouldn’t drink either, especially when you consider the IV chemo drugs I’ve taken over the years to slow the progression. Those can do a number on your liver, the argument goes, so why compound it with alcohol? I don’t happen to see it that way because MS has deprived me of a number of things I enjoy, so this is one thing I will continue. In moderation, of course.

See how I’ve strayed off the subject of me needing to lose weight? That’s because this time around, I’m having a really hard time shedding pounds. Ten pounds is my goal, and fifteen would be ideal. This shouldn’t be hard, because the last three times I’ve committed to dieting, I lost 1 to 2 pounds a week on average. So far, I have lost a whopping two pounds in five weeks. BFD.

I know what I’m doing wrong. First, I need to stop snacking at night. But it seems the only way I can do that is to go to bed early, because I can’t eat if I’m sleeping. This would also provide the added bonus of  getting more sleep each night. My problem is that I like to unwind in front of the television at night, usually watching the Red Sox (who are really pissing me off at the moment) which lends itself to craving something salty to eat. Also, I don’t think I’m over-indulging as far as snacks are concerned, and I tend to crunch on items that are low-fat or low on Weight Watcher points (my diet of choice). Unfortunately the scale says otherwise, although it isn’t as if the numbers keep climbing. They just aren’t moving.

Number two, I need to, as my father was fond of saying, get off my dead ass and onto my dying feet, and reintroduce myself to the recumbent exercise machine. It will help my overall fitness, muscle tone, cardiovascular system, and mitigate the fallout from snacking. All I need to do is take that first step and start a routine, because I am a creature of habit, and routine becomes habit. Seems simple, doesn’t it?

The third thing I should do is eliminate alcohol for a while. Not because I drink a lot (I don’t) or because it’s healthier for me or better for my MS (which could be true), but because it puts weight on me faster than anything else. Wine, beer or the hard stuff goes to my waist line faster than salami, pepperoni, cheese or anything like that. Plus, when I do have something to drink, it tends to make me want to eat something. Funny how that works.

All of this makes perfect sense. These three simple things are interlocking pieces of a weight loss puzzle that fit together seamlessly and will provide the result I desire.  Unfortunately, the spirit is willing, but the flesh is weak. Do I  have to reach a point where I am completely disgusted with myself before I kick things into gear?  Let’s hope not.

I just need to get my shit together, do what I need to do and stay the course. There is no question in my mind that doing so will get me to where I want to be in two to three months. Then the problem becomes maintaining it, which is a completely different animal.

But let’s cross that bridge when we get there. Meanwhile, wish me luck.

 

MS Gear, and What I Most Dread

gear

As a person whose symptoms impact my mobility, I’ve accumulated  some gear over last decade.  They are placed side by side in the accompanying photo, in the order in which I obtained them.

My first noticeable symptom was a droopy foot, which tended to drag across the floor when I walked. An AFO brace solved this dilemma. It gave my foot a permanent lift, which helped prevent me from stubbing my toe on the floor or having it get stuck in the carpet, which could result in a fall. I still use this today, although  the Velcro straps and padding have to be replaced occasionally.

As my foot and ankle became weaker, I purchased a cane. At first, I only used it when I was outdoors, because that was where I ran the greatest risk of spraining an ankle or stumbling over something that might cause me to lose my balance. Now my balance is shot, and I use it all the time when I am not in my house. I can walk without it as long as I am on a flat surface, although it is a struggle over long distances, but I use the cane more as a way of keeping my body from listing to the left, and also to help take some of the pressure off my back and hip. I have three that I use now.

By the way, if you need one, and want something with more fashion and style than the shiny metal variety with the grey plastic handles, you can’t beat the selection offered by The Fashionable Canes web site.

Next, after a lengthy battle with my insurance company to get the purchase approved, came something called The Walk Aide, which is a device that I strapped onto my leg below the knee. The Walk Aide sends electrical impulses down the leg, which lifts the foot.  This was a godsend when I first started using it. I didn’t need the foot brace or the cane, and I could literally jog with it. Unfortunately, once the progression reached my knee, it rendered the Walk Aide useless because my entire leg was screwed up, not just the foot and ankle.

Once the symptoms reached my knee, and made the joint feel like a hinge without any screws to hold it together, I obtained a knee brace brace. When I first strapped that beast on, it felt bulky and unnatural, but this changed after a few weeks, and I hardly notice it now. When I am at work, or am going to be in public for any length of time, I wear both the AFO and knee brace.

It takes about ten minutes to get both of these on or off, and is a bit of a production. The most maddening thing in the beginning was that both items had Velcro straps, which kept getting stuck together. I didn’t know which one belonged to the AFO or the knee brace, and wound up mistakenly taking some of the straps completely off the knee brace. Unfortunately, I never bothered to see how they were attached in the first place, so it took a lot of trial and error getting Humpty Dumpty back together again, stretching my patience thin. It was a good thing no sharp objects were within reach.

When I am in full battle regalia, my right leg is covered or supported by something from my toes to just below my crotch, and I have a cane in my left hand. Maybe I’ll wear a full suit of armor some day. Wouldn’t that be a sight for sore eyes.

I know the odds are not in my favor on this, but what I am trying to avoid is having to add the dreaded wheelchair to this list. Or as least defer it for twenty years or so.

Why do I find the prospect of wheelchair so alarming? Realistically, it would make getting around much easier, provided the environment I’m in is wheelchair friendly. Not having to walk so clumsily might also be easier on the back and hips, which constantly bark at me. Maybe I’d find it more palatable if I only needed or used it some of the time, where it was an option instead of a requirement.

Does what the wheelchair symbolizes bother me the most? A little piece of me dies every time the symptoms progress, because the functionality that is lost doesn’t come back. I know that. But there is something about walking on your own two feet that gives you a sense of independence you don’t realize is there until it becomes threatened. Will having to  rely on a wheelchair signify that I have lost the battle, that MS has gotten the best of me, and that the me who used to golf, go for walks, ride a bike, mow the lawn, and take care of all of the yard work, is dead?

No, that’s silly, because the truth is that I can’t do most of that stuff now, and haven’t been able to for years. But, my mind tells me the potential is still there, because I still have the use of my legs. In fact, I still do some outdoor work, and shovel snow. I can still vacuum the house, and clean bathrooms, although not very well. I’m running errands all the time. I push myself to do these things, in part to prove to myself that I still can, but to also feel useful.  If a wheelchair entered the picture, will all of that be gone?  I know the only way I will sit in one of those fucking things is because I have no other choice. How useful will I be then?

I hate being less than whole, and I hate being dependent. It’s one thing to have that happen when you’re really young or really old, but I’m neither. I should be at the stage of my life where I should eagerly plan for retirement, and look forward to the options that come with those years, instead of worrying about becoming a burden to those I love, and drain my finances in the process. All of these certainly impact why I find the idea of a wheelchair so abhorrent, but one reason stands above all.

I mentioned in a previous piece that I keep the fact that I have MS at arm’s length. I know it’s there, but have conned myself into thinking it isn’t that big a deal. I know it can get worse, and am aware of the other nasty symptoms I could come down with. I have blinders on when it comes to all that however, because the fact is none of it currently applies.

The reality of a wheelchair would burst that bubble, and shred my comfy cocoon of denial. I’d wake up one morning and realize, “Holy Shit! I’ve have MS!” Plus, it would make daily living much more complicated, and I have enough complications in my life.

I’m the stubborn sort though, so what will happen is there will be a period of grieving, then I’ll make lemonade out of the lemons dumped in my lap. My glass is always half full, you see, so something positive will come out of it. Maybe I’ll enter wheelchair races to…….well, just because.

I’ll figure something out. Resiliency is important when MS is your constant companion. I’m sure as hell not going to be someone who is miserable to be around.

I just hope that I don’t have to worry about it any time soon.

 

POST SCRIPT TO THE ACCESS TO HEALTHCARE PIECE: Congress is as it again. It is very possible that the latest proposal, which is to eliminate the Affordable Care Act and replace it with block grants to the states, will come to a vote next week. The only way that will occur is if the votes are there to pass it by a simple majority vote. If passed, this in all likelihood will allow insurers to have pre-exhisting condition clauses, effectively excluding us from the market. If that doesn’t scare you it should. If you don’t like this development, please make sure you let your Senator know ASAP, particularly if he or she is a Republican.

 

MS and Access to Healthcare

medications-money-cure-tablets-47327

I normally avoid writing anything that can be considered remotely political, but I’m making an exception in this case because living with a chronic condition, and having unfettered access to healthcare, is not a political issue. It’s a moral and ethical issue.

When efforts to “improve” the Affordable Care Act captured the spotlight earlier in the year, I could not believe Congress was seriously considering giving insurers the option of waiving the requirement that forced them to provide coverage for people with pre-existing conditions.

Don’t they know that treatment for something like MS can make the difference between living a productive life versus becoming dependent on Medicare disability or even Medicaid, which would cost taxpayers more long term?

Don’t they know that nobody chooses to be in this position, and how vulnerable we are to their political whims?

Don’t they know that even with good health insurance, the out of pocket costs for many of us can be daunting?

Don’t they know that one of the leading causes of personal bankruptcies are overwhelming healthcare bills?

Don’t they know that nobody, save for perhaps the very wealthy, can foot the bill for the treatment we need to halt or slow the progression of our condition?

Are they that blind? Even worse, are they that ignorant or mean-spirited?

Listen, I’m all for reigning in healthcare costs and government waste. I know there are a lot of people who feel government should not be intruding into people’s lives and dictate what they or businesses should or shouldn’t do. But I don’t think it is a stretch to say that anyone who feels that way would change their tune if they were in our position.

Quite frankly, if our elected officials in Washington all had chronic health conditions like MS, access to healthcare would not have strings attached. It would probably become law in a heartbeat.

Our treatments can be very expensive. Without health insurance, there is no way in the world I could get the care I’ve received over the last decade. Seriously, having to pay for one month of treatment would be disheartening. As it is, my yearly out of pocket medical expenses are significant, but what choice is there? Is it right to put someone in a position to make a choice between eating and getting the healthcare they need?

Health insurers will say otherwise, but their primary goal is to make the largest possible profit. They want their premiums, but they also want to pay as few claims as is legally possible. I admit to being biased about this, because I have worked in the healthcare revenue cycle arena for over thirty years. But I do know what I am talking about.

It’s complicated enough to get approval for treatment, and getting the bills paid. Insurers play games all the time, trying to avoid paying a claim or denying treatment that should be covered, often putting patients in the middle and causing undo stress in their lives. If you have doubts, someone who once worked for a large health insurance company, and was responsible for processing and paying medical claims, told me (he was out of the industry by then) he had a monthly denial quota to meet. In other words, his unit had to deny claims, regardless of whether the denial was valid, to hit his number.

I’ve endured a few of these games myself, and it took weeks of persistence on my part to get them to overturn a decision that was wrong to begin with. Fortunately, I had the knowledge to cut through the bullshit and run-around I was getting. And if that didn’t work, I knew who to contact in the state to intercede on my behalf. I can only imagine what it would have been like had that not been the case.

Healthcare is big business, and everyone wants their piece of the pie. The discussion over pre-existing conditions pissed me off because regardless of the rhetoric, this entire debate was about greed, not common sense.

This is not meant to be a commentary about how expensive healthcare is. I think everyone would agree the costs are insane. It is not a critique on what is wrong with the system (a lot), or who should pay for what. Nor is it a recommendation that everyone should be required to have healthcare coverage, although I do have a strong opinion about that. I am not advocating anyone should get a free ride either, because I don’t think we are entitled to anything.

What I am saying, is that if you give health insurers the choice of deciding who or is not eligible for coverage, and/or give them the option of pricing the coverage for those with chronic conditions, they will not do the right thing. Instead, they will either say you can’t be covered, or set their rates so high that nobody could afford them. So don’t put us in that position. The only thing we are entitled to is to have the same access to coverage, and the same financial obligations, as those who aren’t living with something like MS.

Fortunately, it appears that this storm has passed, but I don’t think the issue is dead. Each and every one of you should stay on top of it, and e-mail your senator and congressperson, letting them know how you feel on matters as they develop.

You voice could make a difference between getting access to the care you need, or be shit out of luck, unable to afford what you need, and left hoping your MS will be merciful and leave you alone.

I think we all know how that would work out.

The Indignities of MS

sadness

MS is humbling because it makes you less than whole physically. My philosophy has always been that it is what it is, and to roll with the punches. Some of my symptoms are obvious to anyone who sees me, some are not, some of them piss me off, while I have to laugh at others because you can’t make this stuff up.

The most obvious of these is the way I walk. My gait, if you want to call it that, is slow, ponderous, and spastic. How slow? Let’ s use a driving analogy.

Imagine you are cruising in a convertible on a picturesque summer afternoon, enjoying the sights on a lovely country road at the posted 50 MPH speed limit. After navigating a bend in the road, you suddenly have to hit your brakes because some asshole in a junky car that is leaking oil and spewing noxious smoke, is puttering along at 30 MPH. You can’t pass the car because it is weaving from side to side, and sometimes crosses the double yellow line. You curse out loud because that idiot has just ruined your vibe.

Well, that idiot would be me. I am simply incapable of walking with any pace. If I try, I will most likely wind up flat on my face. I have to concentrate with every step I take, particularly at work, because if I don’t, I could wind up in a crumpled heap.

When most people walk, their legs stride forward and backwards in a straight line, and when they plant their feet, the toes are pointing straight ahead at twelve o’clock. We take our mobility for granted, and don’t even think about the mechanics of it. My affected leg does not move straight ahead. It moves in a semi-circular motion. I use my hip to help swing it around and forward. When I plant my foot, it isn’t pointing straight at twelve o’clock either. It’s more like two o’clock.

In addition to this, my foot droops like a wet dish rag. At first the foot drop was minimal, and I could curl my toes upward to prevent stubbing my toes. Now I have a hard time doing even that, and I just don’t stub the toes anymore. Sometime it’s the ball of my foot that gets stuck. Walking outdoors in bare feet is risky, particularly if I am walking on blacktop or a sidewalk, because if I am not paying attention and taking it slow, I will drag my toes and peel the skin off in the process. That has happened on many occasions.

I am sure that anyone who doesn’t know me, and sees me coming or going, must wonder “what the hell is wrong with that guy?” If I didn’t use a cane, they would probably think I was wasted on something.  If I were to ever get picked up for speeding, and was asked to walk a straight line, I’m sure the authorities would think I was drunk as a skunk because I never walk in a straight line, even with a cane. My house is on a slanted piece of property and is hilly in spots. If I walk out back to my pool deck and don’t have my cane, my arms sometimes flail out to keep my balance against the slant of the hill. It must be a site to behold.

Falling anywhere is embarrassing, even when there is no one around. But having it occur in public is the ultimate humiliation. This has happened twice. Once was in an airport concourse several years ago, where I was in a rush to reach my connecting plane because of a late arrival. The second time occurred early this year. We were looking at a college, I was in an unfamiliar room, and had to get to a bathroom (more on that later). Rather than navigate through a crowd that was substantial, I took a shortcut to circle around the assembled masses. Unfortunately, there was a single step along my route that I did not see. My foot hit the base of the step, and I fell like a cut tree. My cane couldn’t save me either time.

Nothing but my pride was hurt in either case, and in both cases adrenaline must have kicked in because I bounded upright as soon as I hit the ground, walking away like nothing happened with hardly a limp. I wish I could bottle that stuff! Getting away without a fuss didn’t work at the airport, as personnel swarmed from unseen places to make sure I was okay, and insisted they escort me to where I was going via a wheelchair. At least I made it to the gate with time to spare.

The one thing I have learned by these mishaps is the public does not not handle the site of a grown man falling down very well.

I always assess my surroundings, and take note of where the walls are, or where there might be something to lean or grab onto. That’s because there are even times when I have a cane, and am paying attention, that I trip myself up. You see, my balance is terrible, and if I don’t maintain my center of gravity, I will crumble.

Sometimes at home, when I’m standing up and not using my cane, I put too much weight on my right leg and my ankle bends painfully. There are also times when I am walking and my knee doesn’t bend at all. When that happens, it feels like the leg will bend backwards.  So having something nearby to grab onto or use as a brace is important.

One other casualty of my MS concerns bodily functions. Bluntly put, if I have to go, or feel the urge coming, I need to act immediately because my ability to hold things is shot. You see, I can’t clench and walk at the same time. When you think about it, this poses a real dilemma.  I can mitigate this a little by wearing absorbent pads and having a urinal in a car, but at some point the dam will break. And there isn’t anything you can do to hide a number 2 mishap, so it is better not to even try to tempt fate. Fortunately neither of these have occurred, but I always make a point of learning where the restrooms are when I’m in a strange place.

On several occasions, I have had to use the woman’s restroom (the single toilet kind) because I was desperate and nothing else was available. I’ve often wondered how commonplace this might be among people with MS. One of those times, someone was waiting outside the door as I emerged. I got a strange look, but ignored it, held my head high, and walked away as if nothing happened. Better to be embarrassed that way than the other.

There are a number of other little things. Since I have a hard time suppressing the need to go to the bathroom, it shouldn’t come as a surprise that this also applies to flatulence. So, on occasion, I toot when I walk, and sometimes something will unexpectedly sneak out when I am among a group people. When that happens around people I don’t know very well, I try to make a quick escape because I don’t want to see the look on anyone’s face if a fragrant aroma emerges. I might break out laughing.

I can’t wash my feet in the shower, and I have a hard time putting anything on or taking anything off my right foot. As a matter of fact, putting any type of clothing from the waist down is hard, any it takes me a lot longer to dress than it used to. I can’t stop on a dime, so if someone cuts in front of me or gets in my way while I am walking, I get up close and personal with them.

I can’t stand in place for sustained periods of time, and turning from my back onto my left side when I’m in bed is impossible without grabbing onto the mattress to help pull myself over. Walking on a sandy beach is cumbersome because my foot keeps getting stuck in the sand. I REALLY have to be careful going down the stairs, because if I miss a step, or my knee doesn’t bend and I lurch forward, I could literally fall and kill myself. I therefore make sure one hand is grabbing a handrail at all times.

It isn’t all bad though. I get the primo parking spaces, compliments of the handicap tag I have hanging on the rear view mirror, and I am one of the first onto any plane I fly. I consider myself independent because, God forbid, if I found myself on my own, I know I can still take care of myself. But the truth is I can’t do many of the stereotypical “man things” husbands and fathers normally do around the house or with their kids, and I am much more dependent on my family and people in general.

And that is the greatest indignity of all.