Tuesday, October 18, 2016

As Hope Fades, I Press on: Here’s How

Hope can be an effective tool to ease human suffering. In many cases, though, it’s not enough.

After my diagnosis 15 years ago, I set out to become the most informed patient on the planet. Even though there were no FDA-approved treatments for primary progressive multiple sclerosis (and there still aren’t), I knew the answer was out there. I just needed to be smart, brave, and hard-working enough to find it. Oh, and cocky too. Every fighter needs a little swagger.

I tried chemotherapy and immunosuppressants. No luck. I self-administered daily, painful shots. Didn’t help. I participated in a clinical trial where I had to drive two hours each way, two times a month, for two years. It slowed down progression for a while; then it didn’t. I convinced interventional radiologists to thread catheters from my groin into one side of my heart and out the other, so that they could balloon supposed restrictions in my internal jugular veins—twice. In retrospect, I doubt there was anything wrong with those veins. I lobbied doctors to inject powerful medicine into my spinal cord every two months for two years. Again, helped for a while; then it didn’t. I pursued all these treatments in the hope that I might slow down, stop, or even reverse the course of my disease. Instead, I progressed from a limp to a cane to a wheelchair, and my arms and hands are headed in the same direction.

Understandably, I began to lose hope that I would ever find a medical solution. I discussed this with a well-intentioned friend who warned me, “If you don’t have hope, you have nothing, right?”

No. That didn’t describe how I felt. As hope faded, something else took over, and it wasn’t despair. I remained in generally good spirits, even though I knew I might never get better. Something more impassive, almost comforting had intervened.


Where hope receded, acceptance filled the void.

It’s not that I studied the alternatives and chose acceptance as the best path forward. It lived inside me the whole time, waiting to be called upon. Perhaps I inherited it from my mother or learned it by watching her live as a quadriplegic for 39 years. No matter its origin, I was fortunate to have such a tool at my disposal. I suspect, however, that acceptance can be discovered, learned, or acquired if you don’t possess it already.

Acceptance should not be confused with surrender, although the differences are subtle. Surrender carries a negative connotation. “I give up. Do with me what you will.” Acceptance carries a neutral connotation, “If this is my life, then so be it,” or sometimes a positive connotation, “If this is my life, I will make the best of it.” In its purest form, acceptance has a Zen feel to it. You are exactly where you are supposed to be in life. Don’t fight it. Embrace it.

I don’t lament what might have been, envy what healthy people can do, or ask “why me?” I’m grateful for what I have, and I accept what I’ll never again be.

I haven’t given up all hope. I continue to keep one ear to the MS research world. In a dispassionate manner, I evaluate each potential treatment on its merits. But I don’t rely on this hope to motivate me. I’m not emotionally invested in it. I keep hope around only for practical reasons, so that I don’t miss an opportunity for a treatment that may work. There is a lot of research going on. I just don’t know if it will become available to me in time.

Hope is the much sexier cousin to Acceptance. Hope can produce spectacular results. Books and songs have been written about the power of Hope. Acceptance does its work anonymously. The results, important though they may be, don’t garner much attention, save for this obscure essay. Although it may seem counterintuitive, I find that hope and acceptance work together quite well.

For my healthy and disabled readers: how do you manage hope and acceptance in your lives?

Wednesday, October 12, 2016

My Daughter’s Wedding

Three dates I'll always remember:

On October 22, 2001, I was diagnosed with MS.

On July 11, 2008, I started using a wheelchair.

On August 20, 2016, I walked my daughter down the aisle.

People from all over the country descended on Hardy Farm in Fryeburg, Maine, that weekend. Dave and Stephanie King, who got married in our backyard last summer (click here), flew in from Las Vegas. More on Dave later. Kim’s brother and his family drove from Michigan. No less than five of our friends pried themselves away from Cleveland, where the celebration of the Cavaliers' NBA championship was (and is) still going strong, to visit the woods of western Maine. Folks from every corner of New England also made the drive.

Just like last summer, my brother Tom officiated the ceremony. One of the difficult decisions Amy and I had to make was whether I would attempt to walk her down the aisle. Given the rustic setting of our venue, we would be navigating up a grassy hill, over a footbridge, around a stump, and through the dirt to get her where she needed to be. For the past couple of years, I’ve been crossing my fingers that my iBOT wheelchair would still be operational on August 20, 2016, and it was. Still, we worried that Amy’s wedding dress train would get caught up under my wheels. I really wanted to walk her down the aisle. It’s something every father dreams of. Imagine, if you will, how it might feel for someone in a wheelchair.

Amy had put me in charge of writing the ceremony. Leading up to the rehearsal on Friday afternoon, she and I were still tweaking the script, and we needed to make a decision. A crowd of people had gathered in the kitchen where I had my computer set up, so I pulled Amy aside.

“I would love to walk you down the aisle tomorrow, but …”

“Absolutely. Let’s do it. I’m only going to wear my wedding dress once. I really don’t care if it gets run over.”

I burst into tears of joy and buried my head in Amy’s shoulder. Just kidding. I was thrilled, though. I may have cracked a smile.

Everything proceeded wonderfully for the rest of the weekend. After the ceremony, Kim said Amy's train came so close to my wheels that she couldn’t understand how I didn’t run over it. Amy and I had kept our gaze on the altar, so we oblivious. Had such a calamity occurred, we would have laughed it off anyway.

Back to Dave King. On July 5, 1986, about 30 years ago, he sang a song at our wedding reception—Landslide by Fleetwood Mac. Amy appreciates history and tradition, so she asked Dave to sing the same song at her wedding. Here’s a video showing a little from both of those performances. Remember, the video of 1986 is from a 30-year-old VCR tape recently digitized, and the 2016 song was shot by Stephanie using a smart phone from about 30 feet away. However, the message of friendship spanning decades and generations couldn't be more clear.

For those of you receiving this through email, please click here to watch the video.

And here are a few more photos from Amy’s wedding. Click on individual pictures to enlarge them.

Kim and I being introduced…

 Kim's father quite ably stepped in for me
 on the father/daughter dance…

Tuesday, October 4, 2016

The Parable of the Farmer and His Four Sons

Once upon a time, in a faraway land called Happy Valley, there lived a good and honest sharecropper, his wife, and his four capable sons, who were actually two sets of twins. One set of twins, sturdy and strong, could stand up to anything. These brothers were so in sync with one another that many considered them to be joined at the hip. The other twins, less strong but more agile, were best suited for complex farm chores. They worked hand-in-hand to assist the Farmer.

One year, at harvest time, one of the sturdy and strong sons grew tired and listless. At harvest time the next year, his twin began to feel the same way. They continued to get weaker until after a number of years they became lame and could not help out with the farm work at all. Luckily, the other set of twins remained healthy and used their agility to keep the farm going.

But this didn't last. Eventually, one of the agile twins began to feel weak, just like the sturdy twins had years earlier. And, sure enough, after one more season, the other agile twin followed suit. Everybody slowly got worse over time. Today, the formerly sturdy and strong twins, who could stand up to anything, can't move at all and must be carried everywhere. One of the agile twins is in the same boat. The other agile twin is hanging on, but getting more lame every day.

Today, the Farmer relies on the semi-lame, agile twin and the goodwill of the farmer’s (lovely) wife to fertilize the soil, plant the seeds, and harvest the crops…of life.

To be continued.

Cast of characters:

The sturdy twins – my left leg and my right leg
The agile twins – my left hand and my right hand
The Farmer – me

The moral of the story:

When things start to fall apart, you better make the most out of your remaining assets, and you better have a steadfast support system. “Buying the Farm” is to be avoided until all other avenues have been thoroughly exhausted.

(If you remember this story from its initial run in 2011, thanks for sticking around so long.)

Wednesday, September 28, 2016

I Lost My Ice Cream Cone Mojo

One reason I love summer is ice cream cones: soft serve, hard, even frozen yogurt. But it takes a certain amount of dexterity to eat a cone. Not only must I hold it in my hand and bring it up to my mouth, but I have to rotate it every once in a while, or the ice cream will drip off one side. I noticed a few months ago that the rotating part had become difficult. I cut way back on my consumption this summer because I lost my confidence. I lost my ice cream cone mojo.

Here in Maine, fall is settling in. On the way back from running errands with Kim last night, we drove by Dairy Queen, and I felt the urge to get my last cone of the season (man-child that I am). Kim rolled her eyes at my request, but she pulled in and ordered me a small chocolate soft serve (kindhearted woman that she is).

Mmmm. It tasted so good. After I had taken a couple of licks, it was time to spin the cone to the other side. Nope. Didn’t happen. Couldn’t happen. My fingers just can’t pull off that maneuver anymore. Kim wasn't able to help me because she was already driving and texting and had a cone of her own.

Just kidding. She didn't have a cone of her own.

No, seriously. She did have an ice cream cone but she would never text and drive under any circumstances. She can, however, text and eat, text and drink, text in a clockwise direction while rubbing her belly in a counterclockwise direction, and I'm quite sure she can text and sleep.


Because this was a small cone, I managed to get the ice cream down to the level of the top of the cone without ever rotating it, but it wasn’t pretty. At that point, I gently bit the cone, supported it in my mouth temporarily, then rotated my hand a few degrees. I managed to spin the cone 360° in the series of about six bites. I did this at two levels until the cone was down to the bottom section. Then, I executed the grand finale of ice cream cone consumption. I stuffed the bottom of the cone into my mouth all at once. By then, the ice cream had melted the perfect amount, and it occupied all of the honeycomb-type spaces in the base of the cone. If someone opened an ice cream stand and served nothing but the bottom inch of the ice cream cone, I would be their most dedicated customer.

In the grand scheme of things that I’ve lost—walking, typing, driving, etc.—eating an ice cream cone is relatively unimportant. Plus, there are still several other ways I’ll be able to satisfy my occasional ice cream urges. It’s that last inch of the cone, however, that I’m going to miss. There’s only one way to get there, and I can’t do it anymore.

Wednesday, September 21, 2016

Boston’s 2016 Abilities Expo — A Feel-Good Name if There Ever Was One

Screw it. I use the word disability. In fact, I just did a quick search of my book manuscript, and I found it 73 times. When I employ grammar checking software, called Grammarly, and it encounters the word disabled, it highlights it as “politically incorrect language,” and suggests physically challenged as a replacement. No thank you. I’m sticking with disabled.

On Saturday, Kim and I trudged down to Boston to check out the 2016 Abilities Expo, a tradeshow for those businesses and organizations, for-profit and charitable, dedicated to making our lives better. I’m in the market for my next power wheelchair, and all the wheelchair manufacturers were exhibiting (except the next-generation iBOT people). The photo on the right shows me in one standing wheelchair beside a picture of another standing wheelchair. I need to make my final purchase decision in the next few weeks, and this trip helped.

I had no other specific booths I wanted to visit, so I just wandered. Of course, I wandered in balance mode in my iBOT, and I attracted a lot of attention. More than once, I had to excuse myself or I could’ve stood there for hours and answered questions. But you know me; I am an iBOT exhibitionist, and I love the attention.

My friend and the best occupational therapist in the world, Maren, who now works for Invacare, led me to a booth with a remarkable product. As I’ve written here before, I’m losing my ability to feed myself. My arms and hands can’t get food from plate to mouth. Here, I met obi, a robotic eating assistant. I tried him (her?) out and gave the developers an honest critique of where their product came up short.

“Oh, we thought of that. See…”

I stood corrected. Of course, obi costs $4500. Maybe I can convince insurance to pay for it or come up with some other manner to acquire one for less than $4500. You can be assured I’ll let you know if that happens.

I’d never been in a place with so many wheelchairs before. There were traffic jams in the aisles. Two individuals would be parked and speaking with one another, and that’s all it took to cause a backup. But everyone was polite. I didn’t see any road rage or even eye rolls for that matter. Maybe it’s because patience is a necessary virtue, or at least a learned skill, for all disabled people. We are well practiced.

A strange thing happened at one of the booths I dropped in on. In front of a small group of wheelchair users, an impressive, disabled gentleman was endorsing a product that had changed his life dramatically for the better. When he spoke about how the device had improved his ability to interact with his children, he choked up so much that he could barely continue. A normal listener, a normal human being for that matter, would have been touched by this show of vulnerability. But I’m not a normal human being. I wondered if his emotion was genuine or contrived.

I doubted that it was genuine because he was obviously a polished speaker and must have given the same talk many times before. It seemed likely that he would have hammered out those feelings from sheer practice. On the other hand, I doubted that his choking-up was contrived, because only a manipulative person could pull that off, and I had no evidence that he was anything of the sort. I mean, he was disabled after all.

This leads to another question. What kind of asshole doubts the sincerity of a father talking about how much he loves his children?

Which leads to my final question. How would you like to live with a brain like mine? Before you answer that, I must say, of all the brains I’ve lived with, this one has been my favorite.

Tuesday, September 13, 2016

My Book Update

In a previous blog post regarding my memoir, dated March 13, 2016, I declared “it’s done!”


It wasn’t done. I sent out query letters (letters of introduction about me and my book) to a group of literary agents in March and April, and I got no bites. Maybe my query letters weren’t enticing enough. Perhaps my sample chapters weren’t compelling enough. It's quite possible I didn't query the right agents. Who knows? Since April, I’ve worked extensively on both my query letter template and the manuscript itself. That brings me to today.

Now that summer is over and Kim is back to work, I have no excuses. It’s time for me to really finish the book and get out query letters to the next round of literary agents. Then I’ll wait six to eight weeks to see if I get any responses. While I wait, I plan to be productive. On the assumption that I won’t land an agent, which is a statistical likelihood given the ratio of aspiring authors to literary agents, I will pull together a strategy for self-publishing. That way, once I have exhausted the traditional publishing route, I won’t have to wait long before getting the book out on my own.

And if, surprise of surprises, I get any interest from literary agents, then so much the better.

I’ve had many people help me on the book—friends, relatives, writing group members, beta readers, a freelance editor from New York. Everybody told me that it’s well done, but I remained skeptical. Most of these folks had a stake in making me feel good about myself. Recently I submitted an essay to a mid-sized monthly magazine (circulation approximately 100,000 per issue), and they accepted it. Not only will I be published in their November edition, but they paid me (heck, I would've paid them)

Given that the essay is an excerpt from my book, this experience has provided me with a boost in confidence.

The name of the magazine? I’ll let you know in a future blog post, closer to the date of publication, which is late October.

Now, time for me to get back to those query letters…

Tuesday, September 6, 2016

Our trip on The Cat Ferry to Yarmouth, Nova Scotia

People are stubborn. People keep trying to establish a daily ferry service between Portland, Maine and Yarmouth, Nova Scotia. People keep failing.

I admit, Kim and I have often said, "that looks like fun," as we watched the impressive ferries come and go out of Portland all summer. But whenever we checked the prices we were reminded why these ventures fail. People can go on Caribbean cruises for only a little more money.

Kim Has a Very Particular Set of Skills

I may have mentioned in the past that Kim wins prizes on the radio. It’s kind of embarrassing—smacks of desperation I think. On the other hand, I’m never so humiliated that I refuse to accompany her to these concerts and other events. A few weeks ago she won a round trip for two people and one car on this year’s incarnation of the Portland-Yarmouth ferry. So, off to Canada we went.

This is such a bad business idea, I thought as we boarded The Cat, a high-speed catamaran-style ferry. I bet we’ll be the only ones on the boat. But that wasn’t the case. There were plenty of others, and they didn’t appear to be the wealthy sort either. A holiday weekend bump? I hope not.

Rock the Boat (Don’t Rock the Boat Baby)

Kim is susceptible to seasickness. On our ride from Portland to Yarmouth, the ocean rolled with large, gentle swells, up up up, down down down, up up up, down down down. She didn’t like it, not one bit.

The customer service on this ship was outstanding—I think the crew were mostly Canadians. They offered Kim free crackers and ginger ale to settle her stomach. They suggested we position ourselves at the rear the boat where the ocean swells had less effect. Kim also popped some pills and threw on a patch, and by the end of the 5½ hour trip, she had recovered.

When we docked in Yarmouth, the sun had set, and the fog had rolled in. We drove directly to the hotel, checked in, unpacked, and headed downstairs to inspect the lounge. There were 15 or 20 people spread throughout. Not bad for a hotel bar. A hostessy woman invited us to, “Sit anywhere you like.”

Unfortunately, most of the seats, and all the good ones, were down a short flight of steps. “Is there a ramp somewhere so we can get to the bar area?” Kim asked.

No. There wasn’t. Rather than sit at the periphery of the establishment, or transfer me into my iBOT wheelchair so I could climb the stairs, we went back up to the room and got a good night’s sleep.

The next morning we perused some travel information for Yarmouth, and we came away unsure what exactly we would do on this Friday of Labor Day weekend (yes, it was Labor Day weekend in Canada too). The brochures offered a smattering of obscure museums, a lighthouse, and some mansions with supposedly noteworthy architecture. “We’ll find something to do,” I assured Kim.

I saddled up the iBOT for the day and rode her around town. I blew the minds of some residents as I cruised the sidewalks in balance mode. Brain matter spewed everywhere. What a mess.

We had slept so late on Friday that breakfast didn’t happen. One of the employees on the ferry had advised us on the best lunch spot in Yarmouth. We were not disappointed when we dined at The Shanty CafĂ©. Turns out that “Canadian Potato Skins” (their name, not mine) are delicious, and not meal-sized like the potato skin appetizers in the states.

“Okay, now what?” Kim asked as we rolled out of The Shanty.

“I don’t know. Downtown looks sleepy. Maybe we have to get in the car and drive around to see what the town has to offer.”

We did. We found the strip with car dealerships, fast food restaurants, and Walmart. Kim tried a couple of thrift shops—nothing.

“Maybe we need to drive along the ocean. Let’s find that lighthouse.” I offered.

To The Ocean!

We followed a winding road out to the end of a peninsula and found Cape Forchu Lightstation, a spectacular park with an unusual lighthouse. The problem was, the wind blew about 1000 miles an hour, so we walked around for five minutes and got back in the car. On the way out we had to come to a full stop to let two deer cross the road. I like that.

Our ferry guy had suggested Rudder's Seafood Restaurant and Brew Pub for dinner, a nice restaurant and the only brewery in town. With nothing better to do, we set out early for dinner.

I studied these Canadians at the restaurant. They looked like us.  They even spoke like us, except words such as “sorry.” (Surprisingly, in this corner of Canada there were no dangling “eh’s.”) But they inhabited a parallel universe where Donald Trump is not running to be president of their country and where the term medical insurance has no context.

We enjoyed dinner and lingered to take in some live music for another hour, before heading to the hotel.

Back to the USA 

Kim and I were hopeful that the return trip would be more pleasant for her. Indeed, there were no swells or waves for the entire ride back to Portland on Saturday. But there was something even more disturbing. In the seats across from us, a young couple, generally attractive and appearing otherwise normal, were making their best effort to meld into a single human being. They sat intertwined for the entire voyage. She held a novel in her hands, and I swear they were reading it together. That's right. Together.

Final Impressions

Although I encountered some accessibility challenges, the ferry and the city of Yarmouth were accessible enough, average or better than average. Email me if you would like more specifics.

Like the failed ventures before, I worry about the viability of this ferry service. Unlike the young couple who sat across from us, Portland and Yarmouth are not trying to become one. They couldn’t be more different. Portland is upscale, bustling, award-winning. Yarmouth is quaint, a little boring, but trying their best to improve. To Portland, the ferry service is a nice little addition to a thriving waterfront. To Yarmouth, the ferry service is the centerpiece of an effort to make their city a destination for Americans and a gateway for Canadians traveling to America.

I probably didn’t give Yarmouth a fair chance. I’m sure, with better preparation, we could have enjoyed our time more. I’m rooting for Yarmouth, but making the ferry service a success and building their little town into a vacation destination are tough challenges, especially with brain goo splattered all over their sidewalks.

Photo credits:

The Cat – Portland Press Herald
Cape Forchu Lightstation – http://www.capeforchulight.com/

Friday, August 26, 2016

I'm a Panelist on a Live Webinar about MS Clinical Trials

Kate Milliken, my friend and the founder of MyCounterpane.com, invited me to be a panelist for a webinar on Wednesday, August 31, at 11 am Eastern time. I'll be joined by Kate, who will moderate, and Bruce Bebo, Executive Vice President of Research, the National Multiple Sclerosis Society.

This will be a live conversation about clinical trials and MS – how to get into one and their risks and benefits. Bruce will discuss the clinical trial landscape for both relapsing/remitting and progressive forms of MS. I'll describe my experiences in 2005 and 2006 when I participated in a clinical trial for a drug called Rituxan. To read my blog posts about that trial, click here.

There are limited slots available, so if you would like to watch the webinar, live, register using this link. Time permitting, we'll take questions from the audience.

Tuesday, August 16, 2016

My iBOT Gets Recharged

Like a cat with nine lives, my iBOT wheelchair keeps cheating death.

For those of you not in the know, the iBOT is the most incredible wheelchair ever built. Unfortunately, due to bureaucratic red tape and insurance company cold-heartedness, this wheelchair is no longer manufactured or sold. A couple of years ago, the previous manufacturer, Independence Technology, stopped supporting it with parts and service. I’ve been holding my breath ever since.

Finally, a few weeks ago, my batteries began to fail. Other iBOT owners have toyed around with various companies that claimed to be able to recharge spent batteries. These attempts proved frustrating in terms of both product quality and customer service. I began to think that when my batteries failed my iBOT experience would be over. Not so fast.

I checked in at our users' group on Facebook called Save the iBOT to see if anyone had found a new battery vendor. A couple of folks had used a company in Washington, and one user had reported good results. I obtained the contact information and called Tom at Battery Pack Rebuilders. Indeed, Tom explained, he had rebuilt three sets of iBOT batteries and they all seemed to be working well. Even better, his fee for rebuilding batteries was lower than Independence Technology’s.

I explained to Tom that I had an important event coming up on August 20, and asked if he could expedite the turnaround. He said he could. In fact, he received my batteries on a Friday, worked on them on Saturday, and shipped them back to me on Monday. I have run them through an entire cycle and they appear to be functioning just as well as the batteries from Independence Technology.

There are still a million things that can go wrong with my iBOT, things that I won’t be able to fix. But for now, the iBOT lives to see another day, and this coming Saturday will be a very special day. Check back next week to read more about it.

To see me and my iBOT in action, check out my YouTube channel.

Read this good news about the next generation of iBOTs.

Wednesday, August 10, 2016

A Visit to My MS Neurologist

If you have MS, your neurologist is probably your MS doctor. Poor bastard.

Meet My Doctor

I've had the same neurologist since before my diagnosis. Let’s call him Dr. M. It was only by the luck of the draw that I ended up seeing him 17 years ago when I had a little hitch in my step—more evidence of my charmed existence. Other than this annoying little chronic disease, good fortune has rained down on me over and over again.

For the first 8 to 10 years, Dr. M and I were hyperactive: trying one treatment after another, fighting with the insurance company for reimbursement of off-label drugs, and discussing potential treatments still in the development pipeline. He supported all of my Hail Marys in any way he could.

Ours has never been a relationship where I make an appointment with him to find out how I’m doing. I go there to tell him how I’m doing. Sure, he gives me a cursory exam now and then, and we’ve done a few MRIs over the years, but not so much lately. I have advanced primary progressive multiple sclerosis, and we both know there’s only so much that can be done for me.

To date, no treatments have ever been approved by the FDA for PPMS. Around the end of this year, however, we are expecting a drug called Ocrelizumab to be the first. Dr. M and I are cautiously pessimistic. I’ll probably give it a try, but there is evidence that it works best on people who are younger and less disabled than I am.

So what do we talk about once or twice a year when I visit my neurologist, like I did on Monday of this week? It’s about a 50-50 split between medical discussions and general bullshitting. General bullshitting consists of catching up on one another’s family life, complaining about getting old, complaining about the cost of raising children, and complaining about politics (we tend to have the same political slants, so that dominated this week’s visit).

What Should We Expect From Our Doctors?

I enjoy my appointments with Dr. M. I appreciate how he listens, how supportive he is, and how he gives such solid advice. Most of all, I appreciate how he doesn’t sugarcoat anything. That’s not what I need from my doctor.

Do you have a positive relationship with the most important doctors in your life? If not, maybe it’s time to consider a change.