Category: Uncategorized

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.

 

 

Traveling With MS as My Companion

image

I love to travel.

While I have never traveled outside the US, I have visited most of our states, and most of our major cities. I enjoy getting away, seeing other parts of the country, and appreciating how vast and beautiful our land is. When I am on a plane, I love looking out of the window seat at the vast expanse passing underneath on a clear sunny day, or witnessing the spectacle of flying over a city at night, taking in the lit landscape like a young boy gazing at a glorious Christmas tree. As an experienced air traveler, I have learned a lot about what not to do in terms of booking, connection times, how long it might take to get through security, and things of that nature.

Over the last few years the amount of traveling I have done has reduced significantly, not because of my MS, but because the opportunities aren’t as great. The only accommodation I made because of the MS was to arrive at the airport earlier and to give myself more time between connections, because rushing though the airport to make the connecting flight is impossible. Aside from those two changes, my game plan when it came to negotiating the airport, and general attitude regarding air travel, had not changed, until today.

Subconsciously, I knew that when the symptoms slithered into my knee, it was a game changer. After all, I have documented that it is harder to walk, and that my balance is significantly worse in previous posts. I was curious how or if it would change my airport experience in the days leading up to this morning’s excursion from Connecticut to Nashville, Tennessee. In my self proclaimed state of denial and stubbornness to plow ahead and not worry about the consequences, I vowed not to change a thing regarding my airport game plan in advance of this trip. Then, my wife asked this question, although it was really more of a statement: “You’re getting wheelchair assistance this time, aren’t you?”

When I booked the flight months ago, I declined that option, perfectly content to muddle my way through security, and be the first on the plane. But she wouldn’t let it go, so I thought about it and decided, why not? But honestly, I only relented because of the two braces that span my toes to upper thigh, and the hassle they might present going through security. So screw it! If it makes getting through security easier, I could temporarily swallow my pride.

I am so glad I listened to her, for a number of different reasons.

The first thing you need to know about our airport, Bradley International, is that it is not huge. Early morning, which is when I arrived, is the worst time to be there because of all the business travelers getting out on the first flights of the day. And this morning’s crowd was no exception. In fact, it was probably the busiest I have seen it in years. Lots of people, and lots of long lines.

But when I entered the airport today, I knew something was different. Pulling the rolling suitcase behind me was infinitely harder because I had to zig zag through the mass of people, and with my balance, I don’t zig zag very well anymore. After I gingerly made my way to check my bags and drag them to the X-ray machine, I parked myself on a chair, and gratefully waited for the wheelchair attendant to arrive.

The first thing I noticed after I requested wheelchair assistance was that my boarding pass was marked TSA pre-checked, which allowed me to bypass those long lines. As we weaved our way through the throng, I was happy that I didn’t have to get caught up in that mosh pit of humanity.

Going through security was easier for a couple of reasons. The first was that even though they had to wand me, given my leg was encased in metal, I didn’t have to fret over my wallet, watch, and other items being left unattended, because my wheelchair escort grabbed them for me while the TSA agent was doing their thing. The other reason was that, in my opinion, the TSA rep was, well, nicer. He did his job quickly, and got me out of there faster than the previous times I went through the process without the wheelchair. Maybe it was my imagination, but I felt a lot of empathy.

I didn’t really need the chair to get to my gate after I was through security, but I have to admit it was nice not having to walk that distance. This was further illustrated when I got to O’Hare, and walked to my connecting gate. I wasn’t in a hurry, and I could have waited for the wheelchair to arrive, but I chose not to. The trek took a very long time and I felt something I never experienced in an airport before: vulnerability.

You see, people inside an airport are clueless. They wander around, either looking at their phones, looking for their gates, looking for something to eat, somewhere to sit, or rushing through the crowd like a running back picking a hole to run through, and they are all oblivious to who or what is in front of them, in back of them, or around them. That is not a good feeling for someone with balance issues, so I simply steered to one side of the terminal and stopped or slowed down when someone threatened to invade my orbit, using my cane to secure my space if necessary. It felt like walking through a mine field.

Fortunately, the agent at my connecting gate told me a wheelchair would be waiting for me in Nashville, so I knew I wouldn’t be tempted to hoof it on my own when I arrived. It was a good thing too because while there were nowhere near as many people as there was at O’Hare, the walk was just as long, had more inclines, and the floor was carpeted, which tends to grab my foot more.

By the way, is it me or does it seem that the airport wheelchair attendants tend to be older, or smaller of stature? While I am average concerning height and weight, I am certainly not a lightweight, and felt bad for the two that got me because they had to strain a few times to get me where I needed to do.

Another thing that was different is that getting in and out from the window seat for a bathroom break during the flight was much harder, having to grab and hold onto the head rests on the seats in front of me to stay upright. Maybe I am going to have to get aisle seats from now on. And once I got to the aisle, the journey to the bathroom felt a lot more wobbly than it ever used to, and the aisle felt narrower. My hands were always on the seats on each side of the aisle because if we hit unexpected turbulence, I know I would have fallen across someone’s lap. I never felt that way before.

Getting on and off the bus that served as the shuttle to my hotel was harder, and as we approached the Opryland Resort, the bus driver described it as 57 acres under one roof and instead of thinking that was really cool, it seemed like another obstacle to contend with.

The fact is, it has been a year since my last trip, and everything is harder. When I was at the same meeting in Vegas last year, everything was just as spread out as it is here, and there was as much if not more walking inside the facility. But the difference between this year and last, is that last year I viewed that reality with a “no problem” attitude. This year’s attitude is more like “oh shit!”

I will never get on an escalator again with luggage in tow because I have one hand on the cane, another of the luggage handle and, unfortunately, no third hand to grab onto the escalator rail. Not a smart move for someone with balance issues. Nothing bad happened, but I would be lying if I said I wasn’t nervous. Why I didn’t look for an elevator is beyond me. That won’t happen again.

Now that I am here, I am sure I will enjoy my time in Nashville, but I know there be a lot of walking and standing, and I suspect that will take more effort than it used to. Then I will have to endure the return trip home. When I reflect on this trip once I am home, I doubt it will squelch my desire to travel again, but perhaps I will have to be more selective regarding where I travel to, or when my flight departs.

The one thing that I do know is that MS has definitely invaded the ease in which I used to travel, and that with time this will become harder. Perhaps a point in time it will come where traveling will become impossible.

And that would be a very sad day.

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

Welcome to my blog

cropped-welcome.jpgMy name is Steve, and I was unexpectedly afflicted with MS ten years ago. It came as a complete shock because nobody in my family ever had it, and no warning signs preceded the day the first symptoms appeared.

My goal is to enlighten those of you who may have a family member or a loved one who has the disease, or to provoke a smile, a laugh or a nod of understanding for anyone who, like myself, has to cope with the aggravations, inconveniences and embarrassments that our symptoms thrust upon us.

One word of caution: I am not a technically savvy individual. I don’t have a smart phone yet, although that will change soon, and until recently I have not been plugged into the social media scene. My computer skills are very limited at best, so I am sure this site will experiences a number of changes, some unintentional, until I am happy with the final product.

I want to share the experience of what it was like to have lived a perfectly active and “normal” life for almost fifty years before having to cope with a disability that changed everything, including my perspective. I hope you enjoy the ride.

 

NEXT POST: Meds and Treatments