Tuesday, March 13, 2018

Thoughts on Coping

I can no longer type, and I can’t hold a book. I am unable to raise my arm high enough to wave at a friend. I am incapable of getting into bed by myself. I can’t eat, dress, or bathe without assistance. I need help to blow my nose. There are far too many itches I can’t scratch. The insult “he couldn’t hurt a fly” applies literally to me. I can’t walk, stand up, or even crawl. I can’t get up when I fall.
     These are just a few examples. I could give you so many more. And yet I would hesitate to trade my life for anyone else’s. Here’s why.
     I’m rarely wet, cold, thirsty, or hungry. I’m not afraid, intimidated, or abused. I enjoy broad liberties and freedom of expression. I do not suffer from clinical depression.
     I can still see, hear, and speak. I can swallow food and breathe on my own. I’m not in constant pain. I can operate a computer using a mouse and voice recognition software. I’m able to sit up in either of my two wheelchairs.
     I have a diversity of interests which occupy me all day long. I own a handicapped van and an accessible house. I have a strong support system, led by my incredible wife. I am loved and appreciated and well taken care of.
     These are just a few examples. I could give you so many more.  I know of several readers whose list of items to be thankful for is not as robust as mine. But I know of no one whose list should be empty.
     I must be careful. My message isn’t that if I can do it, then so can you. The last thing I want to do is be insensitive to people who are unable to cope as well as me.
     For example, I once received an email from a reader who wondered why she couldn’t be as content as I am even though her MS disability was less severe than mine. She felt sad about having MS, and she also felt guilty about not handling it in a more positive manner — a double whammy. She held me in unduly high regard for the apparent bravery I displayed in coping with my disability.
     My ability to see the positive in an otherwise difficult situation is due more to my genetic makeup and the skills I learned from my quadriplegic mother than personal courage or intestinal fortitude. I should be envied more than admired. Individuals who struggle with adversity and are unable to find the silver linings are not inferior or weaker people. It’s just that this particular skill doesn’t come to them naturally, and they must find it if they can.
     It’s not only people with chronic, disabling diseases who struggle to find contentment in this sometimes cruel world. Anyone at any time might experience depression or despair. Sometimes, if you’re lucky, relief can be found simply by pursuing a fresh perspective. But please know that help is available. There’s a wealth of resources on the Internet, and medical professionals and counselors have high success rates for treating depression.
     In closing, consider this quote from Helen Keller, who was uniquely qualified to address contentment: 
“Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content.”

Clarifying note: I must acknowledge those folks, like my late friend George, who made the conscious decision to stop fighting. I support an individual’s right to choose such a route, particularly under extreme circumstances. 

Tuesday, March 6, 2018

2018 Cruise Post #4 — Ports of Call

On this 8-night cruise, we made only three ports of call, given that we spent two and a half days traveling from New Jersey to warm weather and back.
Port Canaveral
We left Bayonne, New Jersey on a cool Saturday afternoon. By Sunday, it was warm enough to walk on the deck but not to linger there. By Monday, throngs of sun worshipers basked in the 70° temperatures. On Tuesday morning, we found ourselves docked in Cape Canaveral, Florida.
Port Canaveral, as they call the cruise terminal there, is a major port for cruise ship departures, situated only 45 minutes east of the Orlando airport. But, as far as being a destination port of call, it has little to offer. Sure, you can tour Kennedy Space Center, but Kim and I had already done that. You can take a shuttle into Orlando and do the theme parks, but again, been there, done that. Still, we came up with something fun to do.
Kim’s parents spend their summers in Maine and winters in Clearwater, Florida, a two-and-a-half-hour drive from Cape Canaveral. They made the trip on this Tuesday, along with Kim’s Aunt Annabelle and cousin Ann, who were visiting Kim’s parents. We enjoyed a long lunch at a restaurant along the water within walking distance of our ship. This would be the only time we would see Kim’s parents between October and May.
Nassau, The Bahamas
Nassau is more of a traditional port of call. There are lots of local excursions and a busy downtown area within walking distance of the ship. Unfortunately for us, we were one of five major cruise ships to dock in Nassau that day. There must’ve been 16,000 passengers squeezing into the shops, restaurants, and other attractions of Nassau. Somehow, Kim and I found our way to a brewpub that wasn’t too crowded. We downed a couple of beers, walked around the block and decided that our beautiful ship would be a better place to spend the day. On the walk back, we took pictures of this private yacht. Turns out that it’s owned by a Russian oligarch, Leonid Mikhelson, and is valued at approximately $150 million.
Anthem of the Seas stayed in port until midnight, because we had only a short jaunt to Royal Caribbean’s private island the next day.
Coco Cay
A year earlier, we had visited this island with my brothers and their wives, and we had a great time. The biggest drawback is that Coco Cay has no pier. The only way to shuttle 4800 or so passengers to the island was on small, tender boats. We had no interest in that circus. This was the day that Kim rode up on the Northstar, and we enjoyed the relatively empty ship for hours. Royal Caribbean is building a peer at Coco Cay, so maybe someday in the future we will visit again.
Cape Liberty, Bayonne, New Jersey
We enjoyed the last two and a half days of the cruise as we returned to whence we began. When we disembarked the ship on Sunday morning, we were greeted by cold, hard rain as we packed up the minivan with all of our equipment. By late afternoon we were back at home. Kim joked that she needed to end the vacation so that she could get some rest and relaxation. That’s the sign of a vacation well spent.

I realize how fortunate I am to be able to go on vacations like these. Many people at my level of disability don't have this opportunity. It takes financial resources, an adventurous spirit, and a supportive partner. I'm lucky enough to have all three.

Wednesday, February 28, 2018

2018 Cruise Post #3 — Adventures on the Ship

This freaking cruise ship, Anthem of the Seas, is a floating city. Not Boston or San Francisco or Seattle, but more like Las Vegas, New Orleans, or Key West. Other than eating and drinking, here are a few other things we enjoyed.
Kim did a little rock climbing. 

Kim also tried out the skydiving simulator. We couldn’t get a picture of her, but she took this short video of another person. (If you are reading this in an email click here to go to the original post where you can see the video.)

The Anthem has an attraction called the North Star. It is a capsule that rises 300 feet above sea level and allows 14 or so individuals to take in the sights. The Northstar has one spot for a wheelchair user, although the user is required to transfer to Royal Caribbean’s wheelchair, for some unknown reason. Early in the week, when we were standing in line to get Kim a ticket for the attraction (I had no interest in transferring to their wheelchair) we bumped into an employee who works on that attraction.
“We have people transfer to our chair because we need to attach tiedown straps. Since your wheelchair can accept the straps, I don’t see why you couldn’t stay in yours.”
Kim and I decided to give it a try, knowing that if this employee wasn’t present, I might get denied.
On Wednesday, we arrived at the attraction as scheduled. “Okay,” the attendant said, “I can help you transfer to this wheelchair.” He pointed to an uncomfortable-looking manual chair.
“No thank you. I’ll stay in my chair.”
“I’m afraid you’ll have to transfer to this chair. It’s a requirement. I’ll help.”
“I already spoke to the people loading the attraction. They said I would be okay. Go ask them.” He disappeared for a few moments. Unfortunately, my friendly attendant was not working at the time.
“I’m sorry,” he continued. “They said you have to switch over to the other chair.”
I choose my battles. Getting on this ride was not important to me. I just thought I would give it a try, and I appeared to have exhausted my options. A couple of men in line behind me offered their assistance.
“Thank you very much, but it’s difficult for me in the best circumstances, so I’ll take a pass,” I replied.
Kim continued up onto the ride and took these pictures.

Look on the jogging track and you’ll see me in my iBOT.
Kim wanted to try out the bumper cars, but the line was too long.
And we gambled. Kim plays video poker, and I like blackjack. Both of my wheelchairs elevate, but neither of them allows me to get close enough to the blackjack table so that I can place my own bets, so that I can move around my own chips. The dealers and my fellow gamblers were more than willing to help me out, and I made some friends along the way. Long story short, Kim and I lost our asses all week until a spectacular final day on the ship when we won almost all of it back in a few hours. Here is a picture Kim took of three potential Royal straight flushes, which would have paid handsomely. This photo was supposed to be the “before,” but alas there was no triumphant “after” photo, as she ended up only with a single flush, and not of the Royal variety. 

Tuesday, February 27, 2018

2018 Cruise Post #2 — Dining and Drinking

Average cruisers gain about one pound per day. I’m an average cruiser. Kim isn’t. She takes the stairs whenever possible and chases me around in my wheelchair all week such that she hardly gains any weight. Not fair.
The food is so good on a cruise. Meals at the main dining room are included in the cruise fare. It’s like a 4-star restaurant. For a modest upcharge, however, you can dine in any of several 5-star restaurants. We split it down the middle — four meals in the main dining room and four meals at upscale restaurants.
We began at the main dining room, where we were randomly seated with two other couples. Lovely people. I brought my OBI dining assistant with me and asked the waiter to cut up my food into sizes between a pea and grape, as is required by OBI. This caused some confusion, and the need to bring in the boss for clarification, but in the end, it worked out well.
On the second night, we ate in a most unusual restaurant. It is called Wonderland, based on the Alice in Wonderland theme. “You must have an open mind,” I was told, “because you will see food that you have never seen before.” There was no menu, per se. They just kept bringing the food, and we ate what we wanted, which was almost everything. I’m not adventurous when it comes to exotic foods, but I took a chance, and I was so glad that I did. This is the most unusual and perhaps the finest dining experience I’ve ever had. Here are a few pictures.

And here are a couple of short videos, where photos just won't suffice (if you're reading this in an email, to see these videos you must go to the original post here).

We tried out a Chops Steakhouse and twice dined at a nice Italian restaurant. My goodness, I ate a lot. We also gobbled down breakfast and lunch, but sometimes because we slept late we merged the two. I think what got me, what put me over the top, were the desserts. I enjoyed one nearly every meal and sometimes in between. Bad Mitch. Very bad Mitch.
I enjoyed a few cocktails throughout the week, but I’m not much of a drinker anymore. Check out the bionic bartenders, who did make me some kind of fruity concoction (if you are reading this on email click here.)

Kim ended up feeding me much of my food. Some folks might feel conspicuous receiving their food that way, but I don’t. It seems obvious what’s going on when I sit there in such an elaborate wheelchair. And, if anyone makes feeding a 54-year-old man look casual and natural, it’s Kim.

Tuesday, February 20, 2018

2018 Cruise Post #1 — What's the Word for "Planning and Execution?"

Logistics — the planning and execution of complex operations.
Yes, that's it.
I remember the first time I heard of someone being called a “Manager of Logistics.” I laughed out loud. I considered it a made-up name, along the lines of “Special Projects.” No more. For both professional and personal reasons, I have a profound appreciation for the sound practice of logistics.
For Kim and me, going on a vacation requires planning and execution of complex operations, to say the least.
Lately, we are targeting cruises that depart from ports within driving distance of Portland, Maine. Flying remains an option, but the logistics become more complicated. Royal Caribbean's Anthem of the Seas docks in Bayonne, New Jersey, across the river from Manhattan. The GPS predicted it would take us a little over five hours to get here. But arriving in New York at five o’clock on a Friday added about two hours of lost time in traffic. When we made it to the hotel, we grabbed a late dinner and turned in.
This is our fourth cruise, but it is our first time on the mega-ship Anthem of the Seas. We are two of approximately 4800 vacationers aboard, not to mention 1600 or so crewmembers. Don't get me going on the logistics of operating one of these cruise ships.
I’ve taken to sleeping in my Permobil wheelchair when we go on vacation. It's so comfortable that I have to ask myself why Kim and I, when we are not on vacation, go through the elaborate process of taking me out of it each evening, putting me in bed, and then returning me to the wheelchair the next morning. Seems like nothing more than an unnecessary effort to sleep like normal people
We arrived at the cruise ship terminal well in advance of the 11 o’clock boarding time. It’s situations like this where being a wheelchair user has its advantages. At every turn, workers directed us to secret openings in the queue, wormholes in the space-time continuum. Finally, we were grouped together with all the other disabled people at the front of the line. In fact, I was literally the first guest to board the ship when the big door opened. Take that, you healthy, high and mighty walking types.
The next consideration is always the room, and we’ve never been dissatisfied on a cruise ship. Most cabins, other than the high-priced ones, are unbelievably small. The comedian who entertained us on the first night of the cruise joked, “I was taking a shower when I slipped and fell, but luckily the bed was right there to catch me.” The wheelchair accessible cabins, however, resemble a typical hotel room, and at no extra cost. Our cabin on Anthem of The Seas did not disappoint.
Much of what we will do on this cruise is unscripted, unplanned, logistics free. But a few items required signing up and scheduling. And with 4800 competitors for a limited number of slots, Kim and I concentrated on making reservations first. We spent the better part of two hours waiting in lines. I was given no special dispensation in these cases, and I guess I didn’t deserve it. But, soon enough we were signed up for activities, shows, and dinners for the rest of the week.
We enjoyed a 5-star meal in the main dining room on Sunday, the first night, and then we participated in typical evening activities: going to a show, sipping cocktails while watching musicians, and gambling at the casino. Each evening follows this most enjoyable template. 
Watch this space for more updates.

Wednesday, February 14, 2018

A Cure for the Winter Doldrums

As I sit in my luxurious wheelchair, I almost feel guilty. The healthy folks around me must endure less elaborate, less comfortable chairs. Theirs don’t transform into an infinite number of positions at the push of a button. Theirs don’t lie flat for sleeping or elevate to reach things. I suppose that’s why they don’t bring their chairs everywhere, like I do. Seems presumptuous of them, however, to assume that there will be a chair wherever they go.
I sit all day, every day, staring at the computer screen in front of me. Sometimes my gaze wanders to the right where I take in the frozen landscape outside my window. Today, I see the same old red hatchback driven by some lady who works in an office nearby. This morning she must have been late because she ran all the way up the street. A working man’s pickup parked behind the hatchback. With its elaborate storage system in the bed of the truck, and all the equipment stockpiled within, he could survive a mild, perhaps even moderate, apocalypse. The frozen ocean lies beyond the vehicles. Seagulls sit on the ice like so many cue balls scattered on a glistening, chrome felt.
My dog, Phoebe, rests on the couch back, a bundle of nervous energy coiled within her as she polices the neighborhood with her eyes. Her preferred instrument, her nose, is rendered ineffective from this perch. When she sees any nonhuman creature, something snaps inside and she growls and becomes agitated. Her response is hardwired, not contrived. Most of the time, however, she is bored, terribly bored. In the winter, there is not much excitement for her or me. We steal naps throughout the day.
Something startles the seagulls. They are no longer billiard balls; they are kites. A hundred white kites rise above the ocean. As their wings and feathers exploit the air currents, they become cogs in a leaderless, yet purposeful flock.  They exit my field of vision, and the flock disintegrates, its mission accomplished. Individual birds funnel back to the ocean in front of my house and start the process all over again.
The lady returns to her hatchback after a long day at… something. She’s not running. She’s not smiling either. I’ve never seen her smile.
As the sun lowers in the sky, the dog and I await the return of my spouse and Phoebe’s pack leader—Kim. When Kim walks through the door, we awaken from our slumber. I engage Kim in conversation. Phoebe walks up to her, tail wagging, eyes wanting. Kim forgets to greet Phoebe sometimes, and I remind her. During these winter months, after a couple minutes Phoebe returns to the couch, I return to the computer, and Kim retires to her office. Unless today is THE day.
Friday will be THE day. We'll leave behind Phoebe, the seagulls, and the running lady. We'll exchange frozen ocean for tropical beaches. Of course, I’ll bring my chair.  Kim refuses to bring one. I hope the cruise ship has enough of them.
Watch this space for vacation updates.

Note to would-be burglars: we have housesitters, and they are bad ass.

Tuesday, February 6, 2018


I’ve been thinking about tribalism a lot lately. Seems to be everywhere. Seems to be a big problem.

With sports fans, tribalism is largely harmless. My Patriots played in the Super Bowl this weekend, again, and I very much wanted them to win. However, when they didn’t, I said to myself, “Well, we can’t win them all,” and I went about my business. Of course, it was a different situation for Eagles fans who had just won their first Super Bowl. I am happy for them. I remember the feeling, although I don’t remember flipping over any cars in celebration.

More Harmful Tribalism
Politics come to mind. In his farewell address, George Washington warned against the evils of political parties. I continue to be amazed by the collective wisdom and foresight of our founding fathers.
One of the ugliest manifestations of tribalism is racism. When we consider our tribe superior and the other tribe inferior, that can lead to prejudice, discrimination, and even violence. Not good.

Chronic Disease Tribalism
Tribalism even occurs with patient groups. When I first started working the MS Walk fundraiser, I approached our local Chapter President for the National Multiple Sclerosis Society and asked her, “Why do we have our walk so early in the spring? Don’t you think we would have a better turnout if we waited for warmer weather?”
“We tried that one year,” she explained, “but the March of Dimes and the Cancer Society beat us to the punch, and by the time our walk came around nobody felt like walking, collecting pledges, or making pledges for that matter. The early bird gets the worm.”
I once wrote a blog post about how I was jealous of the Parkinson’s community. They have a famous spokesperson who visibly shakes in their commercials — Michael J Fox. We have no celebrities of his stature in the MS community. As a result, they collect more money than we do to cure their disease. Damn them.

Tribalism is written into our DNA. Those early humanoids who were genetically predisposed to cohabitate with other humanoids were more likely to reproduce and perpetuate their family line. But today, tribalism does as much, if not more, harm than it does good. I try to keep that in mind as I interact with people outside my own tribe. I try to overcome my base urge to demonize “others,” and in doing so, become a better person.

Except if the other tribe is the Yankees, who suck.  Go Red Sox!

Tuesday, January 23, 2018

My Top 10 Rules for Interacting with a Wheelchair User

I am overwhelmed by how helpful and pleasant most people are when they encounter me in public. Just last week I was zipping through a crowd of people rather quickly in my power wheelchair. My friend remarked, “You could hurt somebody the way you drive.”

She was right. “But,” I rationalized, “even if I run over an innocent bystander and knock him to the floor, once he realizes it was a wheelchair guy that did it, he would be more likely to apologize to me than be angry with me.”

Without further ado, here are my top 10 rules to follow when you meet a wheelchair user in public (at least if the wheelchair user is me):
1.    If you've read my earlier posts, you know that I can sometimes be seen in my high-tech wheelchair, the iBot. If you'd like to know how it works, and I'm not in a big hurry, I'll probably tell you everything I know about it. However, please don't yell out in the middle of a busy shopping mall, "Earl! Earl! Get over here! You've got to see this! This chair is the freakiest thing I’ve ever seen!" This really happened to me.
2.    If you are so inclined, feel free to offer me assistance with tasks. However, if I decline the offer, please respect my wishes. Just because I’m sitting by the door doesn’t mean I want to go out through it. Just because I’m in line for a beer at Fenway Park doesn’t mean I want you to buy me one. Bad example — I do want you to buy me one.
Also, please don't take the other extreme and assume that any offer of assistance will be considered some sort of insult. My advice is to make the offer if it feels right to do so, but be prepared to step away if I decline.
3.    I don’t mind if you ask me why I’m in a wheelchair. It’s killing you, right? You just have to know, and I don’t blame you. I feel the same way when I see someone in a wheelchair. I want everyone to know what MS is, what it can do to an otherwise healthy person, and that folks with MS are normal people trapped inside a failing body. MS is a disease, but it is also a cause, and I am always looking for opportunities to talk about my cause. I doubt that all disabled folks welcome this question as freely as I do though, so proceed with caution.
4.    On a related note, please resist the urge to give me advice on how I can be fixed. I don't know how many people have, upon learning that I have MS, blurted out the fact that they know the cure because of a friend or relative’s experience, and here it is!
And it’s almost as bad to utter, “I’m not saying this is a cure, but you should try it anyway. What have you got to lose?”
My mind. I’ll lose my mind if I try all these potential cures. I pick and choose the ones I’m most comfortable with.
Now, if you are a close friend or a medical professional, and especially if you’re one of my close friends who is a medical professional, an acceptable conversation starter would be, “Did you see the news story about Treatment X, which is supposed to help MS?” Maybe I didn’t see it, and thank you for bringing it up. Probably I already did, though.
5.    Do kindly step out of my way if I am attempting to navigate through a crowded room. Again, don’t go overboard and draw unnecessary attention to me by shouting at the top of your lungs, “Make way! Wheelchair coming through!” or similar. Be cool.
6.    Most disabled folks welcome the sentiments of concern, respect, and appreciation for what we are going through, but deplore the sentiment of pity. “I don’t know if I would be handling this situation as well as you are,” is OK. “Keep fighting the good fight,” is acceptable. "You poor thing. I feel so bad for you," is not good.
7.    Please don’t talk over my head to the person that is with me, as if I am a child who cannot understand you. I know you don’t do this on purpose, but it is beyond annoying.
8.    When you are in a conversation with a group of people, please try not to stand in front of me, blocking my line of sight to the rest of the group. Try to open up the group into a circle so I can see everyone, and they can see me.
9.    If your small child points at me and says things that would be inappropriate for an adult to say, please don’t be embarrassed. They can’t help themselves. I generally find that if I give them a big ol’ smile, I’ll get one right back.
10. Do not, under any circumstances, make the “beep – beep – beep” sound when I am backing up. I cannot stress this enough. Under no circumstances.
I hope I haven’t made it too complicated for everyone. Now, laminate this list, place it in your wallet or purse, and go make me proud. 

Tuesday, January 16, 2018

Home Invasion

One morning, a couple of weeks ago, Kim refused to get me out of bed, showered, dressed, and ready for the day, like she always had. Instead, she fed me a piece of toast and poured a glass of juice down my throat. She then wished me luck and headed out the door, leaving me helpless in my bed.  
Forty-five minutes later I was startled when someone opened the front door. I heard footsteps coming toward my bedroom. There was nothing I could do, other than scream out…
Bonjour, mon ami.
Bonjour, Mr. Mitchell.
It wasn’t an intruder after all. It was my new personal care assistant, who hails from The Congo, where French was his first language.
Taking care of me, 24/7, can be overwhelming, so Kim and I had decided to hire some help. I began my research trying to determine if the state government, federal government, or medical insurance would subsidize in-home personal care. It turns out I have too many assets and too much income to qualify for assistance—a mixed blessing if ever there was one—and medical insurance simply does not cover this service.
Quite a number of businesses provide home care assistance for elderly people who are trying to avoid the dreaded nursing home. I targeted those companies. They have rules. One company required that two assistants be present, for safety reasons, if the attendant needed to use any kind of lift system to transfer the patient from bed to wheelchair, for example. At the hourly rates they charge, this was insane. Eventually I found a company which didn’t have that restriction for my type of lift equipment.
Like most of these companies, the one I hired has minimum hours requirements. To get the best rate, I need to have the helper here at least four hours per day, two days per week. They spend about an hour and a half getting me up, showered, dressed, etc., and then they spend the rest of the time doing light housework, helping me with some exercises/stretches, and feeding me lunch.
These first few weeks have generally gone well, with a few bumps. The attendant might ask me, “Where do you keep the broom.”
“I have no idea.”
“How do I start the dryer?”
“I have no idea.”
And so on…
This is the first house where I was so disabled when I moved in that I’ve never done any of the cleaning.
I hadn't realized how long it took Kim and me to perfect our morning routines. Trying to explain each little step in the process to my caregiver is tiresome for both of us, but we get a bit better at it each session. 

I’ll write more about the fascinating immigrants I have met already, once I get their permissions. Suffice it to say, they are first rate individuals, and they are making Kim and my lives better.

Wednesday, January 3, 2018

Annual Report 2017

Sixteen years is a long time to have MS. Sixteen is not a big number, however. Let’s think of it as 5844 days or 140,252 hours. Now the numbers are getting impressive. Why stop here? I’ve had MS for 8,415,130 minutes or upwards of 504,907,776 seconds. That’s a lot of seconds to have had MS, and I didn’t skip a single one of them.
Welcome to my annual post where I take a moment to consider what I’ve gained and lost in the past year, and what changes may await me in the coming one. As you know, I try to strike a balance. I don’t sugarcoat my condition, but neither do I focus only on the negative. And I reserve the right to inject humor no matter how serious the topic.
So, how did 2017 treat me? Could’ve been better, much better. Could’ve been worse, so much worse.

2017 Negatives:
  • Again this year, the negatives column is all about increased difficulty getting food and drink into my mouth, due to arm and hand weakness. If a year ago I needed assistance with 50% of my bites and sips, now it's 75%.
  • Having more difficulty operating the computer mouse and wheelchair controls, operating general buttons and knobs, opening doors, or holding items in my hands.
2017 Positives:
  • Physical therapy continued to help me maintain the strength and flexibility in my arms and shoulders.
  • Obtained an OBI robotic feeding assistant.
  • Published my 500th blog post.
  • Began treatment with a very expensive drug called Ocrelizumab. Although it is the first drug ever approved for primary progressive multiple sclerosis (yeah), it probably won’t work for people with advanced disability like me (boo).
  • Also began treatment with an over-the-counter antihistamine called Clemastine Fumarate, which showed some benefit for progressive patients in a phase II trial (yeah). However, many drugs look good in phase II but end up not being effective for the larger population (boo).
  • I made great progress on my book throughout the year. I now have query letters and proposals out to dozens of agents and publishers. If none of them bite, I'll be ready to self-publish by summer.
  • Kim's home business continued to be profitable. Most hobbies cost money. Her hobby makes money. Because of these profits, we went on two cruises.
  • Children are all out of the house, and we are empty-nesters again.
  • Another year above ground – still preferable to the alternative.
2018 Potential Losses (if my disease progression continues, this is what could happen next): 
  • Assistance needed close to 100% of the time for eating and grooming
  • More difficulty operating the computer mouse, wheelchair controls, etc.
  • Eventually, my bladder is going to stop working, and that will suck. This could be the year, but I’ve been saying that for a few years now.
  • Something I can’t even imagine (the devil I don’t know).
2018 Potential Gains: 
  • More writing success at the blog and elsewhere.
  • Find a publisher for my book or decide to self-publish.
  • Caribbean cruise in February, thanks to Kim's home business.
  • Personal care assistants, who began on January 2, 2018, will make Kim’s life much easier.
  • A few positives I can’t even imagine.
I conduct this thorough review only once each year for a couple of reasons. First, it takes that long for me to determine if certain changes are the result of permanent disease progression or are merely the normal ups and downs from aging, seasonal affective disorder, phases of the moon, or a million other variables.

Second, I only do this once a year because it can be a harrowing process. As I contemplate my losses and gains, I tend to extrapolate – envision what my life will be like down the road if the disease progression continues at this rate. I am concerned for my future health and fearful for my future happiness. But, at this moment, Enjoying the Ride is more than just a clever blog name. It’s the truth.
Photo credit at top: my brother Andy took this picture of the ocean cove behind my house, frozen solid, on New Year's Eve 2017.