Blizzard Brody Visits Connecticut

snow flakes

We had our second winter storm of the year yesterday. The talking weather heads wavered on their snowfall forecasts in the days preceding the event, but nobody expected Winter Storm Brody to morph into Blizzard Brody.

The flakes started flying in the pre-dawn hours and didn’t finish falling until late afternoon/early evening. Somewhere in the neighborhood of fifteen inches of snow fell. It was hard to determine how much we actually got because some areas had very little snow while others had drifts that were several feet high, compliments of strong, gusty winds, which whipped the snow around and created white-out conditions during the day. Needless to say, the wind chill was arctic. Fortunately, we did not lose power, which was my biggest concern because of the potential for freezing pipes.

As you know, I use these kinds of events as a measuring stick concerning my symptoms and progression. Snow removal of this magnitude had not been on the agenda for almost a year, so this experience would be a good way to gauge how I’m doing in terms of strength, balance, and general progression.  The verdict wasn’t good.

But it started out well. When I heard what was coming during the morning broadcasts, I heeded my wife’s advice to stay ahead of the storm, and cleared the sidewalks and the portion of the driveway our plow guy doesn’t touch before lunch. Our snowblower can handle a foot of snow or less, so if I waited until the storm was over before removing the snow, the blower might not have been much of a help. Getting rid of it in stages would make the evening removal a lot easier and less strenuous, or so I thought. Besides, I needed to remove the snow that had accumulated around the foundation and was threatening to cover the furnace vents, so if I had to bundle up to do that, why not stay outside and remove everything.

The task took a while to complete, but I came away from it in fine shape. Other than trying to open one of the doors that had been smothered in a snow drift, the task wasn’t physically demanding, and when I returned inside, I didn’t feel any different. Everything was working the same as it was before I ventured outside. So, when the snow finally stopped and it was time for round two, I expected nothing different. I knew there was a little more snow on the ground compared to the morning, but my son was going to do all the heavy work in the form of shoveling and getting rid of the stuff the town’s snow plows had dumped onto the sidewalk. All I needed to do was navigate the snowblower and clear the rest.

I was also better prepared, as I once again listened to the wife and wore both the AFO brace and the knee brace, which I didn’t bother with earlier. Everything was strapped on good and tight, so I felt confident that I wouldn’t have to worry about slipping or hurting myself.

It didn’t take very long to realize round two was going to be a struggle. Right from the start, the ankle kept turning to the right, and the knee followed. Planting the foot to get any push off of it became extremely difficult. The leg weakened quickly, and the balance followed. Like an inchworm, I was literally stepping forward with the good leg, and dragged the bad one behind it. With a little practice, moving straight ahead became easier, but turning and backing up was dicey. When the task was finally done about an hour and a half later, I couldn’t bend the leg at all. The weirdest thing was my bad leg actually felt shorter than the good one, perhaps because I couldn’t keep the ankle or knee straight. It was a good thing my son was there to do the shoveling, because I don’t think I would have been able to do it and remain upright. My balance was that bad.

When I finally made it inside, I had to sit on a chair to shed my winter garb, which was a first, and my wife had to remove my boots, also a first, because I could I couldn’t lift the leg, which was completely limp.

Fortunately, the snow was of the fluffy and dry variety, which made the job easier.  Having said that, my lower back currently feels like an alligator is chomping in on it, and my hip is barking. Both will feel worse tomorrow because the discomfort is always worse on the second day. Plus I had to do a little shoveling when I arrived home from work today, because tomorrow is garbage day, both of the containers were buried, and my son is not home.

Was last night’s experience the result of fatigue at the end of a long, busy day? Perhaps, but as I sit here twenty four hours later, the leg is still pretty weak, the ankle remains shot, and my foot is constantly drooping. I realize this sounds ludicrous, but I sometimes wonder if I’d be better off with a prothesis instead of a limb that feels like a lifeless piece of meat. At least I’d have more strength and better balance, or at least I think I would.

Is this a progression or simple weakness from a limb that isn’t used to working that hard? I have no idea, but suspect it’s more of a weakness issue because I have a similar experience when I get off the exercise bike after thirty minutes. At least I hope it is, because if this is my new normal, it is going to be a very long winter.

Temps are currently in the single digits and the wind, while not as brisk as yesterday, is enough to make the wind chill dangerous. It is bitterly cold out, so the snow will not be melting any time soon. I’ll need a week to recover from this episode and hope we don’t have another storm before then. And the next time it does snow, I hope we get less than a foot so it can be removed all at once instead of in multiple stages.

I know there will another big storm this winter, but pray we won’t have a repeat of four winters past, when it snowed every week for a couple of months, including one whopper of a storm that buried us with almost three feet of the white stuff. The piles of snow from the plow and snow blower became so high and wide that it got to the point where if it kept snowing, it would have been impossible to put it anywhere. Of course, that was four years ago, and my leg was a lot stronger than it is now, and my balance was infinitely better. If we were to ever have a winter like that again, I have no idea what we’d do.

Pray for hot rain, I guess.

 

 

The Hardest Part of My Day

dressed

I love sliding into bed at night. By that time, my body is tired and stiff from having to carry itself on one good leg throughout the day. My hip is sore, my lower back is barking, my foot is dragging terribly because I can barely lift it, and my knee won’t bend without a significant effort. In fact, it is ramrod straight, and almost feels like it is hyper-extended, although it doesn’t hurt.

When I slide under those soft, warm covers,  I can feel my body exhale and melt into the mattress. It feels like I’m weightless, and this poor body, that has trudged and wobbled around all day, finally has a chance to lay prone and release the pressure that has coiled inside it.

The flip side of this is that I have to drag my ass out of its warm cocoon the following morning, which is often the most difficult accomplishment of the day.

First of all, it’s a struggle moving in bed, other than the periodic leg twitching. Turning onto my side is an endeavor, particularly when I turn to my left. The only way I can accomplish that is to reach across the mattress, grab onto its side with my right hand, and literally pull myself onto my side. Turning to my right is easier, but instead of grabbing the mattress, I have to tuck my right arm behind my back and flop over onto my side, like a fish out of water. I therefore have a tendency to sleep on my back all the time, which has forced me to sleep with a pillow under my knees to prevent my back from getting sorer and stiffer, which further complicates the turning process.

So by the time my alarm alerts me to the new day, my body is fully rested, but it also feels like it’s one hundred years old. You see, I can’t just sit upright from a prone position anymore, and as I have already mentioned, turning on my side isn’t as easy as it sounds. Getting out of the left side of the bed is almost impossible, so after I turn to my right, I literally have to shimmy my lower half to the side of the bed, push myself upright, then gently grab the bad leg and place it on the floor. The good leg easily follows.  That’s the simple part.

My leg is the weakest first thing in the morning, so I feel like a newborn colt when I stand for the first time every day. They are also unsteady and, like the colt, it looks as if I am learning to stand and walk for the first time. Compound that with poor balance, which is also at its worst first thing in the morning, and I’m sure I look like a staggering drunk as I make my way to the bathroom. I literally have my right hand on the wall from the time I get out of bed until I reach the bathroom, and there have been many times where that short distance from the bed to the wall almost ended in failure. It feels like gravity is doing it’s best to suck me down onto the floor, but it hasn’t happened yet.

I am a lot steadier when the morning bathroom routine is completed, but the limb is still very weak. The next mountain to climb is getting dressed. Getting my clothes on above the waist is a piece of cake, but not so much with the lower half. Underwear used to be an issue until I learned that the easiest way to get them on was to simply grab the bad leg by the ankle and place it where it needs to go. Same with the socks, but there are two complicating factors in play.

The first is that I am not flexible at all, and I don’t think any amount of stretching, which is hard to do in the first place, will change that. If you have ever strained your lower back, you how difficult it is to put any article of clothing on your legs or feet. That’s how it is for me, minus the searing back pain. Some mornings, the body is so stiff that it feels like the act of getting my leg high enough, and bending my body forward enough to get my socks on, will result in a hernia, a rupture, or a complete blowout of the lower back. Maybe all three.

Then there is the balance issue. Most people think that balance is an issue when one is standing, but it can also be a problem when you’re sitting. When I’m getting dressed, if my butt is to too close to the edge of the bed, and I’m leaning forward a little too far, gravity will take over and I’ll crumple to the floor. Falling is embarrassing enough when you’re upright, but falling when you are already sitting down would be the ultimate humiliation, even if nobody is there to see it. It hasn’t happened yet, but I have come close several times. Mostly when my mind is somewhere else.

So now the chore is almost complete. I am fully dressed and ready to take on the new day, but before that can occur, I have to take my first trip down the stairs. This is the most perilous thing I do all day, not only because of the unsteadiness, but also because I have my socks on, which tends to make the wooden stairs feel very slippery. Plus, it is dark, so I make sure to count every one of those fourteen steps until I reach the ground floor. One hand is firmly on the rail and the other is sliding along the wall when I make that trek, which helps not only maintain my balance, but will keep me upright if the foot slips or the knee doesn’t bend and I lurch forward unexpectedly. As you can tell, I fear falling down those stairs. I don’t think it will ever happen, but I believe that if I were to ever suffer a life-threatening MS related mishap, falling down those stairs would be the most likely scenario.

Once I’m downstairs, all I have to do is get my stuff together for the ride into work, followed by the final act of putting my shoes on and tying them, which often takes two or three attempts. You see, the AFO brace I wear is in that shoe.  I have to hold the leg by the calf and aim my toes into the shoe. Once they are in, I can lean forward, hold the back of the shoe with my fingers and slide the rest of my foot in, before I tie the strings. I’m sure this process looks very odd to someone who witnesses it for the first time.

Now I’m golden. The stiffness that existed twenty minutes earlier is gone, and my strength and balance is starting to come back, although it will take another hour or so to reach maximum capacity. I’m ready for the day and all that comes with it.

By day’s end, the body is once again tired, ragged and spent. I’m off my feet for most of the evening after dinner and the evening chores are done. My rocker recliner calls and welcomes me as I watch television with my wife. Once it is time to turn in, the legs protest having to carry my 190 plus pounds once again. It actually feels like a thousand pounds, but I shuffle up those stairs one last time to start the bedtime routine, then slide under those blessed covers and let the tension melt away. It has become my favorite time of the day.

I wish I could say the same thing about the next morning, but one has to look at the bright side. At least there is a next morning.

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