Tag: PPMS

September Blues

Summer has come and passed. The innocent can never last. Wake me up when September ends.       Billie Joe Armstrong

I’m generally a pretty even-keeled guy. I don’t get too giddy when something great happens, and won’t wallow when things don’t. After what we went through waiting almost ten months to sell our house, and enduring some family drama I haven’t written about, you’d think I would be in a good place. Instead I’ve been in a rut, and I suspect it is going to take much longer than September to dig out. I have given some thought how this has happened, and what I have come up with is ranked from least to most relevant.

Mental fatigue: After enduring the strain I mentioned in the opening paragraph, I’m tapped out, with no appetite for anything that isn’t kumbya. And we all know that isn’t the reality in this country (more on that in a bit).

Sports: Yeah, I know. This is trivial and superficial, but sports is an escape from reality, and we can all use a diversion. Unfortunately, my beloved Red Sox are only adding more angst to the equation because they suck. Not only do they suck, but they aren’t even remotely watchable. They have gone from being historically good to historically bad in a span of two years, which is mind- boggling. I therefore latched onto the Bruins (hockey) and Celtics (basketball) to fill that void, but the Bruins spit the bit, and the Celtics lost a golden opportunity to put their current opponent away. They are now in a dogfight for their playoff lives, have lost all the momentum they had, and it appears they are headed for a disheartening crash. Swell. Maybe the Packers can give me something latch onto when the season starts next week.

Word Press: They changed the format so everything is foreign and different when it comes to this platform. When I preview this on a different medium (laptop, I-pad, phone) it looks different, so it has taken me twice as long to compose, and I have no idea how fucked up it will look when it’s published. It’s an aggravation I don’t need, and it is really pissing me off!

The Endless Virus: We are into our sixth month of this pandemic and there is no end in sight. Summer was supposed to provide a respite from its spread and we know how that turned out. The cold weather months are looming, flu season is coming, and anyone who thinks this isn’t going to take a turn for the worse is delusional. I am tired of the isolation. I am tired of the struggle. I am tired of thinking about everything I do in the context of staying healthy. I am tired about having all this time on my hands which provides ample opportunity to dwell on how fucked up our current situation is. We have at least another six months of this and probably more, and I am just plain tired of it all. The only light I see at the end of this tunnel is not a ray of hope but that of an oncoming speeding locomotive that will flatten anything that gets in its way.

The campaign: We are only 58 days away from Election Day, and those 58 days are going to feel like an eternity. It’s already ugly and it will get uglier and uglier the closer we get to that fateful day. As you know, I have never been a Trump fan. I distinctly remember waking up the day after the election in 2016 absolutely terrified about the next four years, but hopeful that I was wrong about the guy. I wasn’t. Then I made the mistake of reading Mary Trump’s book which not not only validated everything I suspected about the guy, but put me in even more of a panic about our future if he gets re-elected, which I thought wasn’t possible.

It also has me questioning the sanity of our electorate because I don’t understand how anyone can make excuses for this guy anymore. He has botched the handling of the virus. He takes no responsibility for anything, lies constantly, is lazy, uninformed, blames everyone else for his failings, and only cares about himself. The law and rules of government have no meaning for him if they get in the way of a desired outcome. I am a firm believer that the President sets the tone for the people in this country, and what we have right now is a society that is racially divided, politically polarized, intolerant, and mean-spirited. We demonize anyone who doesn’t share a similar point of view, and have become a joke in world’s eyes. You may argue that Trump didn’t create the situation, which I can acknowledge. But he has made it infinitely worse.

It is disheartening to ponder how this narcissistic, egomaniacal, sociopath has continued to get away with what he has. I hope and pray that he loses by a large margin because I doubt he will leave voluntarily if he doesn’t. He’ll insist the election was rigged, was fraudulent, or anything but fair. This from a guy who has encouraged his supporters to vote twice, and done everything in his power to plant that seed of doubt. One can only wonder if the violence in this country will escalate if he refuses to leave. Maybe the futuristic piece I wrote a few months back isn’t that far from reality.

My bottom line is this: I have disliked a number of our Presidents in my adult lifetime, both Republican and Democrat, but I have never questioned their loyalty to the country, it’s people, and our democracy until now. I honestly fear for every one of those things if we are stuck with King Donald for another 4 years.

The Disease: In the twelve years I have had to endure MS, I have never thought of myself as disabled or anything less than whole. I’ve pushed the physical envelope at every opportunity and never though twice about it. I haven’t asked for or expected any accommodations, have never thrown in the towel about performing any required task, and have lived in a state of ignorant bliss in regards to what the future holds. Unfortunately I’ve reached a point where reality has punctured that comfortable cocoon of denial.

Everything has become hard. Walking is hard. Standing is hard. Taking showers is hard. Getting into and out of bed is hard. Turning in bed is very hard. Getting into and out of my vehicle is hard. Getting dressed is hard. Stairs are really hard, and so is putting socks on my feet. The risk of falling used to be remote. Now it is ever-present.

A few days ago, I gave into this reality because I almost dropped a huge stone I was trying to lift out of the back of our SUV onto my foot when I temporarily lost my balance pivoting around so I could place the stone on a nearby hand-truck. The fact that didn’t happen and I didn’t mess my back up in the process is a minor miracle. For the first time ever, I had to wave the white flag and beg off taking the one remaining item out of the vehicle. K had to call a friend to finish the job because what was left was too heavy for Nidan to do himself, which was humiliating from a male ego perspective.

The truth is my leg is toast. My legs have always been the strongest part of my body and have provided a firm foundation that allowed me to do anything I chose, albeit much more deliberately. As much as I hate to admit it, that foundation has crumbled, and this reality is as sobering as it is depressing.

I can’t do anything about the MS other than come to terms with the reality I always knew was there. Knowing me, that will happen sooner than later. As far as all the other stuff is concerned, it is completely out of my control. All I can do is pray that the arrival of 2021 will provide ample reasons to be more optimistic and hopeful about the future than I am now.

If not, being placed in a medically induced coma doesn’t sound like a bad option.

Is it Me?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Is it me, or do steroids make you ravenous?

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

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

Is it me, or has that shit stopped?

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

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

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

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

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

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

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

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

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

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

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

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

 

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

 

 

 

Diet: Crossing the Rubicon

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I need to lose weight.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

The Indignities of MS

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And that is the greatest indignity of all.

 

 

 

 

 

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