Tell Your Mind to Shut Up

scream

The brain is an amazing organ, a super computer that far exceeds anything technology can fathom, and hopefully never will. On the medical front, numerous clinicians have told me it is the final frontier, the one true mystery that remains to be solved, certainly not in my lifetime. Perhaps never.

The brain controls everything, and is also a focal point for those of us who suffer from MS. Some of us have lesions on the brain, some of us have demyelination of the spine, and some of us have both. Today’s focus however is not on the physical aspects of the brain and how it relates to us, but the mental aspect. If we let our imaginations run wild and generate fear and anxiety about our present and future, we aren’t doing ourselves any favors. Simply put, we have to tell our minds to shut up.

Easier said than done, admittedly. We can’t change our DNA, or how we are hard-wired. Some of us are more anxiety-ridden, or prone to bouts of it, than others, while some are better at letting things slide. But nobody who has a chronic illness is exempt from thinking about the implications of their reality. Even those  who are more kumbya and better at letting things slide struggle from time to time, and I am a textbook example of that.

I’ve stated a number of times that my attitude is not to dwell on the what-ifs or the why-me’s, and I stand by that. I try to keep my condition at arms-length, and lock it inside a secure vault somewhere in the recesses of my mind. However, there have been and continue to be times where the doubts, which I call Messi*, break free of the vault and run amok. I can feel the physical fallout when that happens, and the struggle is to corral Messi and drag her sorry ass, often kicking and screaming, back into the vault, and double the locks.

For instance, when the symptoms first started to appear and I wasn’t yet diagnosed, I didn’t have a clue what was going on, but I knew it wasn’t good. One train of thought was that I might have ALS, which really freaked me out. It was actually a relief when I learned it was “only” MS.

Every time there was a new twitch or strange sensation, Messi started speculating on what it meant, and it was never kind. As my progression slowed with the help of a good neurologist and the drug/apheresis routine he placed me on, I came to terms with my condition. I set it aside and worked hard to not let it rule my life.

Still, when something changes, I hear Messi growling. For instance, when the progression rose above the knee and made everything harder, it was hard to ignore. I started doing the math, which went something like this: I’ve had this for ten years, and for the first two the symptoms progressed quickly, stabilized, then progressed again this year to where it is now. So that either means I’ve got another ten before I really have to start worrying, or it means that I’m wheelchair bound in two to three. Therefore, I need to do a, b and c. But what if it happens more quickly? What happens if I can’t work, etc., etc., etc.

Here’s another example: I do a lot of keyboard work, and have always been able to type quickly and accurately. I never look at the keyboard. Once I got MS, I noticed a more typos, but dismissed it because they didn’t appear to be too many to dwell on, and thought I might be noticing what has always been there because of this new thing I was dealing with. Now, however, I can’t type a paragraph, and sometimes a sentence, without a typo of some kind. In fact, I’ve made four of them in this one sentence before I cleaned it up.  Does this mean the MS is beginning to progress into my hands, or is my keyboard getting old and decrepit? If I go down that particular progression path, I’ll be a basket case. So I deposited this concern in a separate compartment inside that vault, and will address it during my next neurologist appointment.

One last example: I participate in a number of message boards for people living with MS. I view myself as a MS veteran, and consider it important to give back and share my wisdom and experience, particularly to those who have just been diagnosed. Being part of these boards makes me feel useful, and also provides ideas for things to write about in future blog postings. Unfortunately, it also makes me realize how better off I am compared to what I read. There are so many people who suffer far worse than me, and are dealing with a lot heavier shit that I am in terms of family, relationships and other personal matters that I never considered. Messi feeds on that, and is begging to whisper “that’s going to be you” in my ear over and over again, trying to make me a believer. I know I have nothing to worry about on the family side of the equation, but the physical part? I already knew that everything they mention is part of the deal, potentially. But actually reading what people endure and what it does to their lives is more agonizing and makes it real. That could be me. Who the hell knows?

So it is a constant battle to keep Messi locked away and sedated, knowing full well one trigger event could occur that will unleash her, and perhaps make her impossible to contain. I don’t doubt the unleashing part of that scenario, but I would like to think that I will eventually be able to reel her in, somehow. Like I said, we are who we are, and I am a glass-half full, eternal optimist kind of guy. That will be my saving grace.

After all, we can’t change the cards we were dealt. Bemoaning our fate only shines a light on what we’ve lost, and can lead us down the slippery slope of what an uncertain future might bring. This train of thought only serves to add more stress that will stoke our anxieties and often raise hell with our symptoms. It’s fruitless and self destructive.

I saw a question posted on a message board recently that asked if we mourned the person we once were. I didn’t like what the question implied, because the me who didn’t have MS isn’t dead. I wasn’t body-snatched while everyone was asleep and replaced with a clone. I’m still the same guy, albeit one who limps like quasimodo seeking sanctuary, is in danger of falling every time he gets on his feet, is in danger of falling down the stairs if he isn’t careful (two more typos corrected), and has a hard time putting on and taking off his underwear, socks and shoes every day. I still have the same values, the same feelings, the stuff that made me the unique person I am. The only thing that has changed is my perspective. I’m not terminal, for God’s sake.

I’m fine with the premise that, in the words of a fellow blogger, it is okay to not be okay. https://msgracefulnot.com/2017/11/28/its-okay-not-to-be-okay/

And, I don’t see that changing, as long as my mind doesn’t provoke Messi.

 

 

*Messi is a play on words, combining the term MS with mess, which it does with my head. I refer to Messi as she because, in my opinion, females have the knack for pushing men’s buttons. I also believe while they are the more protective species in the animal kingdom, they are also more vicious.

Sunshine and Rainbows

rainbow

I was taking inventory and skimming through the last few blog entries and almost depressed myself. “What a downer,” I thought, and was not pleased at the subliminal tone I felt I was portraying.  Not because what I’ve written isn’t true or honest, but because the mood of these entries struck me as sad, bleak and foreboding.

That was never my intent, you see. I want to convey my reality honestly, and not pull any punches in describing how hard and frustrating dealing with a disability can be. However, there is a yang to every ying, so I also wanted to convey that there has been a healthy portion of good that has been served with the MS. I saw that I may have strayed from that the last several weeks. My bad.

Now you may think, what good could possibly come with dealing with a condition that has turned out to be a lifetime sentence?  The answer is plenty, but you have to look for it because they are often little things, and they are often fleeting.

What has come through loud and clear in the ten years I’ve dealt with this, is that most people are good, kind and caring. That may be hard to believe given the events that have taken place across the globe and in our country, and the general mean-spirited vibe you get from watching and reading the news, or surveying our political landscape. I don’t deny that exists, but I believe it masks the true nature of the human spirit that I have personally experienced and witnessed through frequent acts of kindness and empathy.

These shine through in small gestures, like people opening doors when they seem me coming, or offering to help carry things if they see I’m struggling. We live in a very impatient world, where we get annoyed if our computers don’t boot up immediately, or if something we are streaming takes a few extra seconds. But people I’ve encountered don’t seem to mind waiting at the door for as long as a minute to open it for me when they see me limping their way, or offering an open seat on a crowded subway when it becomes available, even through they may have been standing longer than I have. And these are complete strangers.

Colleagues have taken it upon themselves a number of times to stand in long buffet lines to gather a plate of food and walk it to my desk without being asked (probably because they know I won’t) so I would haven’t to negotiate that distance or balance a tray of food in one hand and my cane in the other.

There are more examples I could provide, but you get the point. These small acts of random kindness, which occur almost daily, have renewed my faith in people and re-emphasized what I have always believed: despite our differences, people are generally good and kind in spirit.

The ironic thing is that, in all likelihood, this type of activity has always existed within my orbit, but I was too engrossed in something else to care. Now that I have to be aware of everyone and everything around me, it is as obvious as the nose on my face.

It’s a pity it took something like MS for me to appreciate it.

 

 

MS and Stress

alarm clock

Stress is a reality everyone endures in their lives and the triggers are numerous. Finances, kids, marriage, relationships, career, politics, love, hate, death and religion are a few that come to mind.

The issues that create stress in our lives are as unique as how MS affects us as individuals. What bothers you or causes pain in your life may bother me a little or not at all, and visa versa. Having said that, I think we can all agree that living with a chronic condition qualifies as a huge stress inducer. The ironic thing is that stress is one of the worst things possible for people with MS. But how can you avoid it?

Starting in 2005, I endured a two year period of intense and constant stress.  Up until then, I had been pretty good with managing stress and not letting it affect me, but what was unique about this siege was there were a handful of fronts I was battling simultaneously, and they were all hot button triggers for me. I could feel the stress consume my mind and body, but failed miserably in combatting it, or at least in taking better care of myself. Shortly after this battle ended, the symptoms appeared, never left, and I was diagnosed.

While I can’t prove clinically or otherwise that this caused my MS, I believe it to be true with all my heart. At minimum, it was a major contributor.

Once the symptoms impacted my daily life to a significant degree, I stopped stressing out about a lot of things. The fact that, unlike many people with MS, I don’t live in chronic pain, am not confined to a wheelchair, and am not struggling to make ends meet because my condition doesn’t permit me to work or perform well at my job, certainly helped. How can anyone not be frazzled by having to endure that? My symptoms are annoying, severely limit what I can do, and have forced me to change a lot in my life, but I don’t live with that kind of fear or torment. My reality gave me a very different perspective about life, and made a lot of things that used to bother me feel trivial and unimportant.

Don’t get me wrong, I’m not Mr. Cool, Calm and Collected. A few things remain that I get stressed over, stubborn remnants of my core personality. The one thing I know for sure is that when stress begins to pluck my nerves, my MS takes notice. Stress exacerbates my symptoms, and I can feel it happening. My leg feels flushed, as if what little strength remains is being drained. The limb dangles, flops, and sometimes feels like it doesn’t even exist. I feel like an amputee whose prosthesis is missing, and I have to get from point A to point B without anything for support. When this happens I find a place to sit, close my eyes, and try to focus on my breathing until I can feel by pulse subside and body relax. Normal feeling usually returns shortly thereafter.

Obviously, dealing with PPMS has added to my list of stress triggers, but not in the way you might think. I don’t stress over wondering about how I will feel a year, five years or ten years from now, if I will be confined to a wheelchair, if it will spread to other parts of my body, or if pain will begin to have an intimate relationship with me, because I honestly don’t think about that stuff. Not very often, anyway.

What bothers me is the wondering. What gets my mind going is when I feel something I haven’t experienced before, and wonder if this is the start of what will take me down one of those paths.

I don’t know a lot about RRMS because I never had to deal with it. What I know about that strain is from what the people who do have it tell me, or from what I read. And from what I gather, when a flare is underway, it is as subtle as a sledgehammer. There is no debate or question about what is going on. It is crystal clear and obvious.

My PPMS was never like that. My flares aren’t flares in the typical sense, but are often a subtle loss of function that becomes permanent. For me, it has been a slow and gradual process. The problem is, everyone has more aches and pains as they get older, or develop something that is more age-related than anything else. So if you get a twinge here, or something feels funny there, it’s hard not to wonder whether or not it is MS related.

When I’m on my feet a lot, walk a lot, or do some physical work outside, it isn’t uncommon for me to lose feeling in my toes, have my hip or back ache terribly, or have the leg feel like mush. If that feeling lasts longer than usual, my mind immediately wonders if this is the beginning of something bad. My rational mind is saying, “now Steve, this happens all the time. Take a chill pill and ride it out. You know how this song goes.” However, my emotional side doesn’t want to hear that. It wants to hop on the panic slide.

If you have read this blog, you know that I’m pretty good at compartmentalizing things, and so far I’ve done a good job at not taking the full ride on that panic slide. Maybe that’s because nothing catastrophic has occurred. I’ll lose a small piece of something, mourn it, say oh well, it could be worse, them move on.

Recently however, I can’t escape the nagging feeling that the progression has been moving a little faster than in the past, and worry that this might become a trend.

Last week, I described my travel adventure, and the one take-away from that trip is that, in all likelihood, I will avoid those kinds of meetings again. The facility was too big and spread out, the distance from my room to all of the meeting and gathering places was significant, and those excursions had to be made several times a day. I also had a much harder time negotiating big crowds. You see, it is really difficult to have a cane in one hand, a drink (or food) in another, and negotiate a sea of arms, legs and bodies belonging to people who are enjoying themselves and aren’t aware someone with terrible balance is nearby, and that bumping into him by accident could cause an embarrassing scene. Why should they? As a result, I stayed in my room more than I had in the past.

So, I’ve decided it might be better to connect with friends by going directly to their home towns, or having them visit me, instead of dealing with the obstacles last week presented. I can manage the airports. It’s the other stuff I can do without.

Here’s another example of why the progression train might be picking up steam. There are a few interior and exterior doors in our house that need repainting, and painting is one of the few things I can still do, and I enjoy doing it. But over the last few weeks, I’ve noticed painting isn’t as simple as it once was. Bending, squatting and twisting to get in a corner, or reaching up to get a high spot, take a lot more planning and effort. The task it is harder to complete, takes longer, and isn’t very enjoyable. That really sucks.

Have you ever woke up at night, not know what time it is, and heard the tick, tick, tick of your alarm clock? You can’t see what time it is, can’t remember if you set the alarm, and wonder when or if the alarm will ring. This describes the way MS causes me stress.

Do the episodes I’ve described mean this is finally it, that I’ve hit the downhill side of my MS curve? I hear the ticking, but I’ve been aware of the ticking the moment I started taking the hard-core meds. What drives me nuts is wondering if all this this means that the alarm to my personal Doomsday Clock is going to ring soon.

I certainly hope it doesn’t.

 

 

 

 

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.

 

 

 

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

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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.