Category: MS

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.

The Indignities of MS

sadness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And that is the greatest indignity of all.

 

 

 

 

 

Attitude

sunset-summer-golden-hour-paul-filitchkin

I just finished reading a post on a blog called Fuck MS (you should check it out, by the way). When I saw the title I smiled and laughed, because that has been my attitude from day one. And when your are dealing with an illness or disability, attitude is everything.

When my body began to go haywire ten years ago, I knew something was wrong, but everybody I went to couldn’t give it a name, which was frustrating. As the process to figure out what this was continued, my imagination ran wild, and not in a good way. When my MRI came back and I learned it was MS, the verdict actually came as a relief. That sounds silly now, but when you think it might be something like ALS, Multiple Sclerosis isn’t bad by comparison.

Then shit started happening, and the slow erosion of my mobility commenced. Through it all, my reaction to each hurdle that presented itself was annoyance and defiance, not sadness or despair. I certainly wasn’t happy that my leg started feeling like an overcooked strand of spaghetti, but pissing and moaning about it wasn’t going to change anything.

I’ve always been good at compartmentalizing things going on in my life, and I’ve placed my disability in the attic, tucked away with all the other junk that I don’t have any use for. I hate the word disability or handicap, even though it applies, because I don’t want that to define who I am. I also don’t want people thinking of me that way. I’m still the same guy I was twenty years ago, it’s just that I walk funny now, have no balance whatsoever, and can’t do a lot of things I used to. Many of the things I can’t do, like yard work, I don’t miss at all.

I didn’t always have this attitude. I use to bitch and moan about a lot of petty things, and it took becoming afflicted with MS to realize how good I had it. Family, friends, and having love in my life was something I no longer took for granted. So now, I try not to sweat the small stuff, other than the Red Sox.

Granted, I still have full use of my arms, hands and the other leg hasn’t been touched. I still work full time, still drive a car, and still maintain the standard of living we had prior to the diagnosis. None of that has changed. I can still go for walks, although I’m slower than molasses and need a cane, a brace that lifts my foot, and a knee brace.

I know statistically that there is an excellent chance I will wind up in a wheelchair some day, and I also know I won’t be happy should that day come. In some ways I am trying to prepare for it, particularly in terms of housing and career, which is the primary reason I have started to write.

Is that denial? Perhaps. Maybe my tune would change if I was in constant pain, or if more of my body was affected. But still, every day above the dirt is a good day. Having your glass half full rather than half empty is really important to not letting something like MS swallow you whole and take over your life.

As they say, ignorance is bliss, so I’ll continue living in this self-constructed cocoon as long as I can until something punctures it. Until that day comes, and I hope it never does, I’ll remember that blog title, and wear it like a shield of armor and honor: Fuck MS!

 

Zombie Land

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Fog

Most medications or treatments available to you will have some kind of side effect. In my experience, some are worse than others. Here is a list of all the things I have either tried, have had done, or am currently doing, and how they have affected me. Disclaimer: this is how these affected me – everyone is different. Your physician will guide you.

PILLS:  Ampyra: I took this for 90 days and stopped because it didn’t help me. There were no side effects.

Low-Dose Naltrexone (LDN): This is a compounded medicine that my current neurologist suggested years ago, and is the only pill I continue taking. Ironically, I stopped taking the drug four years ago because I didn’t notice any changes or improvements, and wanted to reduce my medical expenses. Two weeks later, I wasn’t getting around as easily and my foot seemed to drag more, so I resumed taking the pill and have never stopped. This is not a standard MS treatment. In fact, many in the medical community question its efficacy, but it has certainly helped me.  Anecdotally, the FDA has approved Naltrexone for the chronic treatment of opioid dependence and drug detoxification. Hmmmm.

SELF-ADMINISTERED INJECTABLES:  Early on, I took Betaseron for a few months, ditched that, then tried Copaxone. These meds have more of a proven track record for RRMS sufferers, but I tried them anyway. What did I have to lose?

I used the auto-injector, a gizmo where you load a pre-filled cartridge into the injector, position the tip flush onto the site, and pull the trigger, which releases the needle and dispenses the drug subcutaneously. I eventually stopped because they did nothing for me, other than cause bruising at the injection site and, in some cases, angry, sore welts. These occurred when I had the injector positioned at a slight angle into the body, I was holding onto the injector too loosely, or didn’t have it placed firmly on the injection site. The truth is I was never comfortable giving myself shots, particularly in the arms and the hips, which is where I screwed up most of the time. The stomach and butt were easier, primarily because there was more fat there and it didn’t sting as much, but if I did make a mistake on either, I’d be reminded for a few days every time I sat down.

SPINAL TAP:

Also called a lumbar puncture, this is a procedure where a needle is inserted into your spine and fluid is removed. A high volume of certain proteins in the spinal fluid means you have the condition. It isn’t fool-proof however, as 5 to 10% of people with the condition don’t test positive for the protein.

The main and most problematic side effect with a spinal tap, occurs when fluid leaks out and changes the pressure in the brain or around the spinal cord, causing a horrific headache. I was flat on my back for two hours before I was discharged, and was encouraged to lay down for most of the day upon my return home, in addition to drinking a lot of water. While I was resting in the hospital following the procedure, a nurse told me the headaches didn’t occur frequently, and fortunately I was not the exception.

If you are thinking about having this done, my only recommendation is to have the procedure done at a hospital. Not a doctor’s office. My appointment for the procedure began at my first neurologist’s office, where I had to tuck myself into a tight fetal position while he attempted to draw fluid. It was not the most pleasant experience in the world, and was compounded by the fact that he did not succeed in drawing any fluid after four attempts. Each new attempt was more uncomfortable than the previous one. I was not a happy camper, and I think he knew better than to suggest a fifth try. Instead, I went to the interventional radiology department at the hospital across the street from his office. They had me lay on my stomach, positioned the needle with the help of a computer, and got what they needed in about thirty seconds. I didn’t feel a thing.

STEROIDS:

I’ve received monthly infusions of solumedrol, a steroid, along with other IV agents I’ll mention shortly, for about eight years. As I mentioned in my previous post, the impact after the first three-day home treatment was remarkable. As I also mentioned, I had to deal with an uncommon and miserable side effect that caught me completely by surprise: hiccups.

You might wonder, what’s the big deal? Well, these little bastards started on day four, became chronic, and lasted for three long days. I’d get a brief respite, then they’d resume and last for hours. I didn’t know what to do and, like a dumb ass, didn’t bother to call my doctor. I just suffered. At first it appeared that eating helped them subside, so I gorged myself. That turned out to be a dead end. All it did was make me feel like a fully inflated basketball had settled into my stomach, which made the hiccups feel worse. I’m not taking about one hiccup at a time either. As the days progressed they would come rapid fire in threes, fours and sometimes fives. I talked little, and felt like a freak at work. Sleeping was next to impossible, and I felt utterly helpless.

Even now, when I get infused with one gram of the stuff each month, I have to deal with hiccups the following day. They start off slowly then pick up steam as the day progresses. It’s just something I have learned to live with. Fortunately, they aren’t as chronic, and are gone by the time I go to bed.

One other side effect is ravenous hunger, which lasts up to the time the hiccups start, so I guess they are good for something because the last thing I feel like doing when I have hiccups is eat.

I can’t speak for the long term effects of repeated steroid use. What I can tell you is that a dear friend, who suffers from Crohn’s disease, has been taking prednisone for over fifty years. He currently has a host of joint issues, and the wall of his heart has thickened. He has no regrets, however, because it was either deal with the pain or have a decent quality of life. I feel the same way, but wonder if the steroids will come back to bite me somewhere down the road.

CHEMO DRUGS:

In addition to the infused steroids, I have also been receiving a chemo agent called Cytoxan. When I first started taking it, I was in bed for two days. My body apparently got accustomed to the drug, so now I’m in Zombie Land for only one day.

When I get home on the day of the infusion, I’ll feel a little fatigued. The next day I’ll wake up feeling pretty good, but as the day wears on, the fatigue settles in for an extended stay, and my face looks and feels like I’ve been in the sun all day. I’m the stubborn sort, so I plow through the day and try to be as useful as possible before giving in on day three.

It’s hard to describe what day three feels like. The analogy I’ve come up with, is that it feels like a fog slowly rolls in, then descends in full force, enveloping me in a shroud of dazed lethargy. I call it Zombie Land because that’s what I feel like. I don’t drink or eat much, and have no desire to do anything. My body feels like a wet dishrag, my mind feels like I am beyond stoned (and not in a good way), and this lasts all day. I sleep a lot, and when I am in the deepest regions of Zombie Land, the dreams are bizarre.  A repeated one involves me being in my bedroom, and I am awake. I’m woozy and can’t tell if  I am dreaming or not. Then, I begin to levitate above the bed and hover there. I eventually realize I am dreaming, but it still feels very real. In fact, all the dreams I have when I am in this state feel very real, which is great if it’s a good dream, but sucks if it isn’t.  On day four, the haze has lifted, and I feel burned out, like I’m coming off a bender, but without the headache. By the time I get home from work, the burnt out feeling is gone, and I’m simply tired. Everything is normal the next day.

I can’t imaging what cancer patients have to go through. I only get 600 milligrams of the stuff and feel like crap. Thank God they give me some anti-nausea meds during the infusion because I wouldn’t want to have to deal with that too.

I just started a new drug last Friday called Orcevus. On par, it was a slightly better experience compared to the Cytoxan. I receive a smaller dose of steroids, which meant no hiccups at all, and that was wonderful. The fatigue on the day of the infusion was a little worse but infinitely better the following day, although the sunburned feeling remained. On the third day, Zombie Land arrived early and hard, and stayed that way most of the day. I slept more than usual and still felt semi-comatose by the time I finally went to bed for the evening. The burned-out feeling the day after the zombies left town was minimal.

If you’re keeping score, day one was a wash, days two and four were better, and day three was worse. I can live with that, and the best part is I will only have to do this every six months instead of every month, once my initial course is over (I get a second dose next Friday). Having said that, the Orcevus I received was half the dose I normally get with the Cytoxan, because the protocol is to split the first dose two weeks apart.  It makes me wonder how bad Zombie Land will be when I get the full 600mg dose in March, or how long I will reside there.

Plasma Apheresis

I described the plasma transfer in my previous post, so I won’t describe it here. As far as side effects are concerned, there aren’t any, at least not for me. But what I don’t like about this procedure, or any of these procedures for that matter, are the needles and tape.

First of all, when receiving an infusion of steroids and/or chemo, there is only one needle used, and it’s a fairly small one. Sometimes, you hardly feel it going in. With this procedure, two needles are involved, and the second one is bigger because it has to handle the volume of blood coming out of the body without popping out. I exaggerate by calling it a sewing needle, but sometimes it feels that way going in. They also don’t stick this needle deep into the vein like they do for the infusion needles, thank God. It typically goes into the big vein in the crook of the elbow, and it has to remain in position in order for the blood flowing out the body and into the centrifuge to remain at a constant volume. This means that if for some reason it moves, or the flow somehow gets disturbed, the nurse has to remove the tape and fiddle with the needle, i.e., move it around while it is in your vein to get the flow going again. That makes me break into a cold sweat.

The other issue I have with needles is that sometimes the vein looks good but flattens out when the needle is inserted, which means they haven’t hit their intended target. When this happens the needle will get moved around to see if they can get any blood. If that fails or hurts too much, the needle is removed, a new one is retrieved, and you get stuck someplace else.  My record for needle sticks for a single procedure is six. That happened only once, during the time when I had three plasma transfers done in a two week span. By that time there weren’t a lot of places to choose from, and my arms were starting to look like raw hamburger. Good thing it only took six, because there wasn’t going to be a seventh. There weren’t any other places to try. The IV nurses usually get it right the first time, but everyone has a bad day.

The tape, and specifically its removal, hurts more than anything else. A lot of tape with strong adhesive is used to secure the needle in place and to prevent it from moving. As you can see, I have a lot of arm hair. So when the tape comes off, it hurts like hell. I’d prefer that the nurse just rip the damn thing off and get it over with quickly. Unfortunately, the tape is removed slowly and carefully so that needle doesn’t get yanked out haphazardly. It feels like each hair is being plucked out individually before they get to the point where the needle and rest of the tape can be quickly removed.  Not fun.

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I’m tempted to get my arms shaved or waxed, but that would not be a good look. This is the primary reason that my favorite place to have a needle inserted is the top of my hand. That sounds awful, I know, but there is no hair there, and I can move the hand freely without feeling the needle in it, unlike other places. Plus, having the needle placed there doesn’t hurt any more than any of the other spots. You just assume it will because the skin is tighter, and there isn’t much meat there.

Words of advice

The key to having plump, juicy veins that your nurse can pierce with one stick, is to hydrate, and coffee doesn’t do it. Drink as much water as you can before your procedure, and this will go a long way towards ensuring you won’t feel like a pin cushion. The only caveat is that if you are having the plasma transfer done, you’ll have to walk a fine line with water intake because once the machine is turned on, you can’t get up.

The arm with the big needle shouldn’t move at all, otherwise the outgoing volume can change, which means the needle gets moved around. So the goal is to drink enough to get your veins plump, but not so much that you can’t hold your bladder for the hour and a half procedure. Otherwise, you will have to ask for a hand if you need to pee. Literally. Besides being embarrassing and a little messy,  it could also result in the big needle getting dislodged or moved.

Medical Marijuana

I wish I could should share this experience with you, because I am definitely curious. I’m itching to get into one of the dispensaries in Connecticut, where it is approved for MS, see what they have to offer, and learn if you catch a righteous buzz from the stuff. Alas, I can’t because I haven’t had the experience. Not that I’m bumming, because one of the things it manages best is one symptom that is very common for people with MS, but one that I have fortunately managed to escape so far: pain.

 

If you wish to share your experience with anything I have mentioned or, preferably, anything I haven’t, please leave a comment.

 

 

 

Meds and Treatment

IMG_0312One of the first items most of us have to confront is how we are going to treat our condition, most of which involve drugs of some kind. The most viable options are predicated on the type of MS we have.

I tried virtually everything in the beginning. Even though interferons aren’t designed for primary-progressive (PPMS) folks like myself, I tried them anyway at the suggestion of my first neurologist. Sticking myself with needles several times a week wasn’t the most natural thing in the world, and I developed a better appreciation of what diabetics must endure on a daily basis. I didn’t do this for very long because it didn’t help me.

Next up was a three day course of steroids infused intravenously at home, and afterwards I thought I died and went to heaven. My symptoms, which were minor compared to what they are now, virtually disappeared, and I felt like I escaped from prison. Unfortunately, the relief lasted less than two weeks, and the symptoms slowly re-appeared. I also developed a little-known side effect that sounds trivial but proved to be one of the most trying experiences of my life. I’ll elaborate on a future post about side effects. Also be aware that you will have a port attached to your arm during those three days, so all you have to do is clamp new IV tubing into it rather than have to insert and affix the needle each subsequent day. You can’t get the port wet or it could cause an infection. So no swimming, and you will also need to wrap your arm in plastic wrap when you take a shower to keep it covered and dry.

One last word of advice. If you do the three day home treatment, listen to the nurses’s instructions, particularly the part about putting immediate pressure with a sterile gauze on the site when you remove the needle. My third and final dose was done early on a Monday morning, before I went to work. I was a up exceptionally early that morning so I could finish the treatment, which takes about an hour. Given the hour I wasn’t thinking very clearly, and forgot the part about applying pressure when I  removed the needle. What a mess! For the few seconds it took for me to realize what I forgot to do, blood spurted all over the place. It made one hell of a mess, and looked like a scene from a slasher movie. Good thing my wife didn’t see it. She hates the site of blood.

Soon thereafter, I started monthly infusions of steroids and cytoxan, which is a chemo drug. When my current neurologist suggested it, my first thought was, “are you kidding?” But MS is an auto-immune disease, so theoretically the drug helps the progression by compromising your immune system so it stops cannibalizing the body. It must work, because while my progression has not stopped, it has been slow and remains confined to one limb. I also assumed that since I would be taking this shit, I would catch every cold, virus or bug that I came into contact with. However, since that time I have been remarkably healthy. Strange.

Plasma exchange (plasmaphersis – see photo) got added to the equation a few years ago. This is a process where needles that are connected to  plastic tubing, are inserted into a vein in each arm. The blood exits your body through one arm and enters a centrifuge, which filters the plasma that contains the antibodies that attack the immune system.  The good plasma or a plasma substitute (in my case, Albumin) is returned to its host via the other arm. It’s very similar in concept to kidney dialysis. When I first started my infusions, they were done in the apheresis center, where I first saw patients getting the treatment hooked up. The process looked uncomfortable, medieval,  and swore I’d never consent to it. Now it’s old hat. In the beginning I had three of these treatments done over a two week period and the results were similar to my first steroid gig: a significant improvement. However, like steroids, the improvement was short-lived, and now I get them monthly in addition to the other infused meds to maintain the status quo.

I haven’t had these infusions for over three months now due to a kidney stone issue I had to deal with. Previously, the longest I had gone between treatments was six weeks.  During this time my walking has become more cumbersome and my balance is worse than it has ever been. I resume treatments tomorrow (with a new drug this time) and I’m expecting the symptoms will revert back the the level they were three months ago. If not, I’m screwed.

The drug and treatment options are numerous, but the bottom line is they involve pills, needles, expensive procedures (thank God for good health insurance) heavy duty drugs, or a combination of them. I’ve only covered what I know, and haven’t scratched the surface in terms of the meds available. Your neurologist should be able to explain what he or she thinks is best for you, and explain the pros and cons in detail. Don’t make the mistake of not asking questions.

Diet, exercise and other holistic means can’t hurt, but we’ll talk about those at a later time.

NEXT POST: Zombie Land

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