All I Want For Christmas

Santa

With apologies to Donald Yetter Gardner

All I want for Christmas

Is my two good legs

My two good legs

Just my two good legs

Gee, if I could only have my two good legs

Then I could say goodbye to needles

 

It seems so long since I could say

May I have the pleasure of this dance

Gosh, o gee

How happy I’d be

To walk without annoyance

 

All I want for Christmas is my two good legs

My two good legs

Just my two good legs

Gee, if I could only have my two good legs

Then I would be a happy camper

 

Back when I had two good legs

There wasn’t anything I couldn’t try

But now when I exert myself

It makes me want to cry

 

All I want for Christmas is my two good legs

My two good legs

Just my two good legs

Gee, if only could only my two good legs

My spine would have all of its myelin

Then I’d could embrace every season

Then I’d feel blessed beyond all reason

 

MERRY CHRISTMAS EVERYONE. I hope Santa treats you well, that you are surrounded by love, and bathed in happiness.

 

 

 

 

 

 

 

 

 

 

Ice

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I’ve never been a fan of winter. Having lived in New England for most of my life, I do enjoy having four distinct seasons, and I love the sight of the snow falling outdoors, provided I don’t have to commute in it. White Christmases are wonderful, but those have been a hit or miss proposition over the years. Before MS entered my world, I enjoyed frolicking in the snow, engaging in snowball fights, sledding down a steep hill, and even removing snow from the driveway and sidewalks, at least some of the time. I don’t mind the chilly temperatures. but could do without the bitter cold and wind. The truth is, once the Super Bowl is over, I’m ready for spring, but February and March seem to last forever.

Getting around during the winter could be cumbersome at times, but it was never unmanageable.  Over the last several years however, clearing portions of the driveway and sidewalks have become progressively more difficult. So has been getting around on a snowy terrain. Nonetheless, there wasn’t anything winter could throw at me that I couldn’t handle, until this year, that is. There is an old foe that I have succumbed to, whom I no longer bother trying to challenge. That foe is ice.

Ice has become the bane of my winter existence. We rarely get ice storms, but the snow invariably leaves frozen stretches on my driveway and sidewalks regardless of how well they are plowed or cleared. Plus, the snow often turns into slush, which freezes easily.  Worst of all, the snow on or surrounding these surfaces melt during the day and re-freeze at night, leaving a flat, frozen, and often invisible slick of black ice that can easily take me down. And if there is a melt followed by a long stretch of subfreezing weather, the ice can linger for days, but I digress.

We received our first snowfall of the year last week. It wasn’t a large accumulation, and the snow was easy to remove. The next day was clear, the sun was bright and a lot of the snow melted. When the sun set, the temps dipped below freezing and the standing water froze solid. I ventured outside the following morning to move something in the back yard, and had to cross the driveway to do it. On my way there, I mistakenly stepped on one of those frozen slicks and stopped dead in my tracks.

I used to be able to simply shuffle my feet along an icy surface to get where I needed to go, but the deteriorating balance has made that more difficult. What little strength or control I have in the bad leg is rendered moot by a slick surface, and the good leg, which handles most of the body weight, tends to slide more on icy surfaces because of the weight it handles. If that slides out from under me, I would lose complete control and the results would be both comical and ugly.

Unfortunately, I was on a slanted surface, and I soon learned that negotiating icy surfaces that are even remotely slanted is impossible. Gravity takes over, my body starts leaning, and my feet started sliding. Even my cane was rendered useless because rubber-tipped canes have no traction on ice.

I was literally stranded on what looked like a four by four section of driveway, and I was completely helpless and vulnerable. I couldn’t crawl, because that meant I would have to move my feet to get onto my knees, but if I did that, they could slide out from under me. I couldn’t gingerly slide my feet either because the bad leg was on the downhill slide of the slant and kept moving in that direction. I could see myself doing a split on the ice, tearing my groin and hamstrings in the process, howling in pain.

After the initial panic subsided, I saw that all I had to do was reach over, plant the cane into a small pile snow that was within arm’s reach at the edge of the driveway, and pull myself off across the remaining two or three feet without having to lift my feet off the ground. Once I was on solid, snow covered ground, I waddled a few feet down the snowy lawn until I reached a flatter, unfrozen section to the driveway, and made my way back into the house.

With ice, every step is an disaster waiting to happen. It snowed again yesterday and left a thin film on the driveway and sidewalk. When I went to get the mail, I swear I heard the theme from the movie Jaws playing in my head, except the slick sidewalk was lurking  instead of a Great White Shark. It didn’t bite me this time because the snow that covered parts of the walk did not have an icy foundation, and my feet could easily grip the snowy surface.

Public parking lots and sidewalks are even worse. At least I can to a certain extent control how well my home base is maintained when it comes to snow and ice removal, but all bets are off in pubic areas. At least the handicap parking areas are close to most entrances, provided some yahoo hasn’t decided to take the last open spot to park in because there wasn’t an open space nearby.

I once toyed with the idea of  moving to a warmer climate when my working days are over, but as much as I dislike being cold and dealing with the snow, heat and MS are not a good match, so I don’t see myself leaving New England permanently. Maybe finding a more temperate place to live from January through March is the next best thing.

Either that, or I need invest in a lot of driveway salt. Maybe wearing a helmet, shoulder, elbow and knee pads when I venture outside would be a good idea too!

Thanksgiving Inventory

Thanksgiving

Living with MS can be frustrating, grueling and depressing. Having said that, there is more good than bad in my life, and I thought it appropriate during this traditional time of the year to recognize and give thanks to everything that is good in my life, and keeps me going.

I am thankful for my family, who loves me, supports me, has never thought of me as damaged goods or anything less than I have ever been. The same applies to my friends, from Maine to Southern California, from Florida to Washington, and all points in between. Thank you all.

I am thankful for my colleagues at work, who are an extended family and have never treated me with pity, or expect anything less from me than they would expect from themselves.

I am thankful that I can still work full time be productive, and provide financial support for my family.

I am thankful that I can still walk, exercise, drive, get around (albeit with some difficulty) and lead a mostly normal life.

I am really, REALLY, thankful that I don’t live with pain.

I am thankful for my neurologist, who has limited my progression and kept it at a glacier-like pace.

I am thankful for modern medicine.

I am thankful that I am not afraid of needles.

I am thankful the sight of blood doesn’t freak me out.

I am thankful for those of you who read and follow this blog, for your comments, encouragement, and friendship.

I am thankful for all of you who have read my manuscript and helped me get it to the point where (hopefully) 2018 may be the year it gets published.

I am thankful that my parents, who have been gone for two years and whom I miss dearly, both lived to a ripe, old age and were able to see my son grow into his late teens. I am grateful for everything they taught me. I am thankful that they did not lose their mental or physical sharpness like a lot of people their age, and that they did not linger or suffer.

I am thankful for seeing the Red Sox win not only one, but three world series championships during my lifetime.

I am thankful for being on this side of the dirt.

Happy Thanksgiving everybody. I hope you all have a happy, healthy and joyous holiday season.

The Auto-Immune Irony

illness

The symptoms were subtle when I was first diagnosed, but after a few years into my battle with MS, the progression became steadier, and I began to use a cane whenever I left the house. The interferons I was injecting myself with weren’t doing a damn thing, and I had become dissatisfied with my neurologist because he appeared unsure about how to proceed. In fact, he once called another neurologist to confirm a thought he had while I was in the office with him. This didn’t inspire a lot of confidence, so I decided to make a change .

I work for a large health system, and when I asked my boss if he knew anyone in the MS field I should consider, he deferred to the organization’s Medical Chief of Staff for a recommendation, and was given the name of a neurologist close to where I work, who was reputed to be one of the best clinicians in the state. I made the switch, and later learned that he was the guy my former neurologist had called that day.

During our first appointment, he declared I should change medications, which made me happy. I had come to hate injecting myself, particularly when I didn’t notice any improvement whatsoever on the progression front. In hindsight, I don’t know why I agreed to take them in the first place, because I knew they were designed more for the relapsing remitting (RRMS) kind, than the progressive kind I had. Tysabri wasn’t an option because the blood test he ordered when I scheduled the visit indicated I had the JC Virus. After listing the options available to me, he recommended I start monthly infusions of steroids and a chemo drug called cytoxan.  Shocked might be too strong a word to describe my initial reaction, but I was definitely surprised and confused. I mean, how in the world would a cancer drug help me. It seems silly now, but all I thought about at the time was getting sick and having my hair fall out, and asked him if I would have to deal with that.

He assured me the dose I would be getting wouldn’t cause those side effects, and I would be given an anti-nausea med just in case. When I asked why he believed this was the appropriate way to go, he explained that MS was an auto-immune disease and described what that meant. To paraphrase,  my immune system had run amok, and my body was cannibalizing itself in terms of the demyelination  that had occurred. The chemo would suppress the immune system so it would stop attacking my body, thus putting brakes on the progression. This explanation made sense, so I consented to the monthly routine.

This decision was made with a lot of trepidation that I didn’t share, because I didn’t want to sound like a wimp (I don’t have that issue anymore). Part of the anxiety evolved from the fact that I would be getting monthly blood tests to check my liver enzymes, because the chemo had the potential to fuck up my liver, which thrilled me. There were other things they would be checking to make sure the chemo wasn’t doing more harm than good, but that was the one that I latched onto.

My other fear was I would become susceptible to every germ known to mankind, because I would be shutting my immune system down. Consequently, I assumed I would be sick all the time, catching colds and any flu bug or any virus that was floating around. I thought the winters would become an especially miserable, unending chain of one illness after another. After all, wasn’t this a logical assumption, given that my front line of health defense was going to be taking a siesta? I was afraid that the devil I didn’t know would become worse than the one I did, but hoped that the reality would be different, and that the treatment would turn out to be the lesser of the two evils.

That was seven or eight years ago, and I look back at that time with amusement. Why? Because the weirdest and most ironic thing that has occurred since I’ve been getting these infusions, is that I’ve been remarkably healthy. Unusually healthy, in fact. Just mentioning it makes me wonder if I am jinxing myself for the upcoming cold and flu season, but I can’t deny the truth.

When I first started the treatments, I may have encountered the occasional cold, sinus infection or flu. I can’t say for sure because I don’t remember those kinds of details from that long ago, but if they did occur, they were far and few in between. What I can say with absolute confidence, is the last cold I had was two or three years ago, and it was short-lived. I don’t remember the last time I was sick with the flu, had a stomach virus, or anything like that. Last year, everyone in my household had something, and had it on more than one occasion.  I also work in a large office, where everybody was sick at one time or another. Not me. I was the oasis of health in a sea of sickness at home and at work. I’m sure germs were floating all around me on a daily basis, yet I remained unscathed. It’s bizarre.

Is this pure coincidence? I think not. I believe that even though I’m trying to put my immune system to sleep, it remains overactive enough to shield me from the maladies that latch onto everyone else, yet not so active that the progression accelerates. I guess my neurologist knew what he was talking about.

This winter is going to test this theory, because I have switched to a new chemo agent that I will take every six months, instead of one Friday every month. You see, even though I didn’t get sick, I felt like I had the flu every Sunday that followed the Friday infusion, a parting gift from the chemo. This new drug will be administered twice a year and actually kills certain cells (T cells?).  I assume this means the drug is stronger, takes longer to get out of my system, which in turn means it takes longer for the cells that it kills to be replenished enough to give them another whack. My next scheduled infusion isn’t until March, so it will be interesting to see if I will enjoy another illness-free winter. Should that occur, how can I not conclude that my over-active immune system is like Pac-Man, gobbling up every germ seeking shelter before it can settle in my sinus or gut?

A definite plus, but I’d rather have two good legs.

 

Home Improvement

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Last Saturday evening, I was sitting around the fire pit in my back yard with my wife and a friend, sharing a drink and shooting the breeze. It was a perfect autumn evening: cool and clear, with no wind. A bright, full moon had emerged from behind the hills across the valley my yard overlooks, and was now perched in the center of the sky, casting moon shadows at various places in the yard. We had paused for a moment, and all you could hear was the hissing and crackling of the fire. I gazed at the moon and the picturesque scene, and thought: “I’m really going to miss this place.”

I need a new house, you see.

My condition is not the only reason I need to move, because I’m at the point in my life where scaling down makes sense. I never enjoyed yard work all that much, never liked house cleaning (who does?), and don’t take much pleasure in house maintenance, primarily because I’m not handy. A smaller house with a smaller, flatter yard would be cheaper to maintain, and require less work to take care of. The by-product of that would presumably be more free time for my wife and I to enjoy.

MS simply amplifies the need. Our house is too big for one person to maintain, and it’s frustrating for me to see my wife take on all of the inside house stuff knowing she could use my help. The cost of hiring people to mow a yard that is very hilly, remove snow from a driveway that is long, uphill and curvy, in addition to a portion of a private road we live on, is becoming prohibitive. Navigating the three stories (main floor, upstairs and basement) is becoming more cumbersome, and walking on terrain that has few flat spots has become a problem.

I’ve lived here the longest as an adult, so my connection to the place is deeper than any of my other homes, including my parent’s house. When I left home during my early twenties, I was ready to spread my wings and assert my independence. There wasn’t any melancholy or sadness, and when my parents passed away a couple of years ago, any emotional attachment I may have felt with the place was buried with them.

This is different. Quite frankly, we love our house. It is perched on a hill, has a wonderful view of a the Connecticut hills, and the interior decor and furnishings are just about perfect. So is the landscaping. It’s the house our son, who is now 19, was raised in. It took less than six months for us to move into the place once ground was broken, and we watched every step of the construction process, from the time the foundation was poured to the time we moved in. A lot of memories, good and bad, reside within those four walls, and it is going to feel very strange to call a new place home.

What is most daunting, though, is the thought of moving.

Back in the nineties, when I was twenty years younger, stronger, and had two good legs, we moved four times within a five year period. Two of those moves involved crossing state lines. The first move was a grand adventure, but the novelty had certainly worn off by move number four, into our current home. After that one, I swore that if I moved again soon, it would be in a pine box.

So I know what is involved, and understand that this move will be a royal bitch. First of all, we have far more stuff than we’ve ever had to move before, and we aren’t in our thirties anymore. Plus, I have a hard enough time helping decorate the Christmas Tree, so I have no illusions about what I will be bringing to the table when it comes to packing and moving a home. Maybe I’ll get an adrenaline rush and surprise myself, but that’s wishful thinking. The safer bet is that the process of moving is going to suck, and I will hate every second of it.

Having said that, the idea of a new place is exciting. We’ve built two houses already, and it is cool to see the planning and thought translate into the real thing during the construction process. Plus, when the new home is complete, you don’t have to worry about stuff breaking down, or having to replace anything in the near future. I relish the idea of having everything on one floor, ramps leading into the house from the sidewalks and garage, wide hallways that can accommodate a wheelchair, a bathroom/shower that will as well, and a stairway into the basement that has a stair lift.

As you can surmise, the new house will be ADA compliant, and knowing that we won’t have to worry anymore about my condition making it impossible to live in my home will put all of our minds at ease.  We want to incorporate everything we love about our current place, and, budget permitting, add a few things we don’t have but wish we did, like a sun room.

Do I have to move right away? Technically, no, but the progression clock is ticking. I would rather be in a place that will easily accommodate my needs should the day arrive when I’m wheelchair-bound, than have to look for a place because I have a hard time getting in and out of my home. Planning for a move now allows us to think clinically and rationally, and leads to better decision making. Waiting until it’s too late makes the process more emotional and impulsive.

My self imposed moving deadline is 2019. The biggest issue confronting us is finding a piece of property in our current town that checks all the boxes, and doesn’t cost an arm and a leg. That isn’t easy to come by in the section of town we desire, and contractors usually scoop the parcels of land up when they do. I’d rather not be beholden to any one contractor.

I’ve pegged our odds at finding the right place in our current town 50-50 at best. If that fails, the fallback position is to buy a house that is is disrepair but has good bones on the cheap, rip it down to the studs, and fix it up. The problem with that, however, is there aren’t a lot of ranches in our town, and this might actually cost more than building from scratch. So we search, wait, and hope something will emerge. As a last resort, we may have to expand our search to neighboring towns, but would first have to decide if that would be better than staying in town and settle for something less than perfect. Hopefully is doesn’t boil down to that.

They say patience is a virtue. We’ll see. Hopefully, a parcel will become available and we’ll be able to build the house we want. A nice view would be a bonus.

 

 

 

 

 

 

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.