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!”

Oops.

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.

Tuesday, August 2, 2016

“A Medical Marijuana Story” or “Mitch Does a Mitzvah”

We have friends, Robin and Sam, who live in Providence, Rhode Island. They visit us a couple of times a year. Two weeks ago we spent the day with them in our beautiful city of Portland, Maine. As we drove down Congress Street, I played tour guide and said, “On your right is Nosh Restaurant—a carnivore’s haven. Oh, on the left is Otto Pizza. Their mashed potato and bacon pie is my favorite.”

I continued, “Up here on the right is my medical marijuana dispensary.”

Robin asked, “Are you making much use of that?”

“Now and then, but it’s not helpful for my major symptoms.”

“You’ll never believe this,” Robin said, “but my 82-year-old father has raised the subject. He suffers from neurologic pain in his legs. He’s a stoic, tough old man, so I know if he complains about pain it must be awful.”

“Opioids?” I asked.

“He refuses to touch them, even if they might work. This is a man who has never done any drugs his entire life. Doesn’t drink. I think he sees cannabis as a natural treatment.”

“We could pull into the dispensary right now, and I could pick some up for him to try, except it’s illegal for me to give away medical marijuana.”

“I couldn’t ask you to do that.”

So we definitely did not pull into the dispensary. I certainly didn’t go in and buy a strain of marijuana called high CBD, which is supposedly good for pain control but doesn’t make the user “high.” I didn’t give it to Robin, and she didn’t take it back to Providence.

The next day she didn’t visit her 82-year-old father and tell him that she had acquired a sample of medical marijuana. Her father didn’t consult with his neurologist, who didn’t recommend that he give it a try.

Robin’s 82-year-old father didn’t consume the high CBD edible, and it didn’t eliminate all the pain in his legs. He didn’t decide that he would pursue obtaining medical marijuana legally through his state’s program.

And Robin didn’t enjoy blowing her brother's mind when she didn't call him to say, “I just gave our father some marijuana today.”

Did I mention Robin’s father is Jewish? I so wish I could have helped him because, who knows, maybe he would have said something like, “Thank Mitch for me, and tell him he did a mitzvah.”

Wednesday, July 20, 2016

A Triumphant Return to Jordan Pond

Before I was diagnosed, I knew something was wrong with my legs. I had been told a year earlier it might be MS, but my current doctors had pooh-poohed that idea and were looking in other directions. Then Jordan Pond happened.

Our first trip to Jordan Pond, 2001

Kim and I and the kids went camping near Acadia National Park with her extended family. We decided on a leisurely, 3-mile hike around Jordan Pond—something even the small children in our group could handle. The trouble started about halfway around. I began struggling to lift my left leg up over small obstacles like roots and stones. For the remainder of the hike, I took extra rest breaks and hobbled my way around the pond, feigning a sprained ankle so as not to concern the others. But Kim and I both understood that this represented an escalation in whatever the heck was going on in my body.

When I reported this event to my neurologist, he ordered the diagnostic test that, with the benefit of hindsight, I should have undergone a year earlier—an MRI of the cervical spine. Soon afterward, I was diagnosed with primary progressive multiple sclerosis. I’ve always remembered the Jordan Pond incident as a seminal moment in my MS journey.

Our Return Trip, 2016

Recently, Kim and I found ourselves back at Acadia National Park, this time with three other couples. It was a momentous day—the 100th anniversary of the park. Just like 15 years earlier, someone in the group suggested a hike. One of the most popular features of the park is its network of well-maintained carriage trails, which are generally wheelchair accessible, especially considering I was in my iBot wheelchair. We pulled out a map of the carriage trails and considered our options.

Although the loop I struggled to complete around Jordan Pond was not wheelchair accessible, I noticed several carriage trails in that same area of the park. I knew what I wanted to do. I wanted to make a new memory of Jordan Pond.

We arrived at the parking lot in two vehicles. On this 100th anniversary day, it was a madhouse. Kim found handicapped parking in the front row, but our friends in the other vehicle had to loop around and around the parking lot and play chicken with a car from Massachusetts in order to find a spot. Then, the eight of us set off on our 3-mile hike.

We walked through lovely wooded areas of the park and were presented with occasional views of Jordan Pond and the Bubble Mountains beyond. Midway through our hike, our carriage trail intersected with the same Jordan Pond loop trail we had followed 15 years earlier. Kim and I posed for pictures and reminisced about that day.

After our hike, we treated ourselves to a lovely lunch at the Jordan Pond House. This restaurant is renowned for its popovers, and I learned why. Somehow we missed this opportunity back in 2001, but we didn’t repeat that mistake.

What we’ll remember

Sure, I’ll always remember Jordan Pond for how it played a role in my MS diagnosis. But now I’ll also remember our triumphant return visit, when I completed a 3-mile hike without difficulty, and we left with full bellies and smiles on our faces.

Tuesday, July 19, 2016

Wheelchair Camping

Again this summer, we rented cabins at a campground and roughed it for a few days, so to speak.

Kim and I had just started dating in high school the first time I visited Hadley’s Point Campground. I was invited on her family vacation, but I had to sleep in the back of a pickup truck. No problem for a 16-year-old boy on a mission.

Kim and I, and later our kids, made many return trips to Hadley’s Point over the years until we stopped camping about the same time I began using a wheelchair.

Last year this campground added 14 cabins, two of which were advertised as handicapped accessible. These cabins had become so popular that I had to call on January 2nd, the first day they took reservations, in order to secure three nights in July.

I’m always uneasy about vacation accommodations, and this was no exception. When we arrived early on Thursday afternoon, Kim unlocked the door to our cabin, made a quick inspection, and reported to me that it looked good. I decided to see for myself. There was a slight elevation difference between the driveway and the concrete porch on the cabin. Because of the soft gravel, I got stuck on that lip. But Kim gave me a boost up onto the porch. I went inside and confirmed her assessment that the cabin looked promising.

My brother Tom used his bare hands to build a makeshift ramp out of landscaping mulch. It was a decent, interim step, but I wondered if it would hold up until Sunday.

Because we wanted four cabins in close proximity to one another, Tom and Diane ended up with the wheelchair accessible cabin, next door. We decided to hang out at their place while we waited for the other two couples in our party to arrive—my brother Andy and his wife Karen1, and our friends David and Karen2. But the elevation difference between driveway and porch deck was even higher at this cabin. We saw a campground maintenance vehicle drive by, and Kim hailed him. I explained the situation and this older gentleman took a keen interest. He said he would be back shortly.

Not long afterward, a younger man, who turned out to be the campground owner, arrived with a front end loader full of stone dust. He and the older gentleman built two nice ramps that held up for the entire stay.

I asked the obvious question. “You can’t have had any power wheelchair users rent these cabins, right?”

“Nope. You’re the first one.”

I then had a long conversation with the owner about the process he went through to have the cabins built and some of the conflicting advice he had been given about ADA compliance. I complimented him on his good-faith effort, and I helped him understand a couple of more issues, including the lack of grab bars around the toilet. He promised to fix that. He got the most important issue right by building the accessible cabins even larger than the other cabins. Most accessibility shortcomings can be fixed down the road, but “too small” is a problem that usually can’t be overcome.

If you're a wheelchair user and are interested in these cabins, I can wholeheartedly recommend them. Just remember, when you check-in have them make sure the ramps they made for me are still in place. Below, are some pictures of the interior of our cabin.

We had a great time cooking outdoors, sitting around the campfire, and catching up with old friends in nearby Southwest Harbor. But the highlight of the trip for me was our visit to Jordan Pond. Come back tomorrow to read about that adventure.




Tuesday, July 12, 2016

MS and Beer Drinking

Beer and I go way back.

As a child – I can’t remember what age, but damn young – Dad would ask me to hand him a beer. I’d peel I would off the fliptop for him, take a sip, and pass the can along. Standard procedure.

In the eighth grade, my friends John, Jamie, and I somehow procured a six-pack of Colt 45. We drank it behind the movie theater. That was the first time I felt a buzz from alcohol.

During high school, I developed an intimate relationship with beer. Later, as a young adult, beer became a staple of my weekend diet. I remember a BYOB dance at the Knights of Columbus Hall, probably in our late 20s. Kim took charge of packing the cooler. At the dance, when I reached for my first beer I conducted an inventory: 1,2,3…9,10,11...15,16,17

“Kim. What the hell? You only brought 17 beers?”

“That’s all we had in the fridge.”

“Hopefully, someone will have extras at the end of the night. If not, since you’re the one that screwed up, I’m getting nine, and you’re only getting eight.”

Back then, it was all about quantity (and greed, apparently).

With age and MS, came moderation. Locally brewed craft beers became all the rage, and we learned to discriminate based on taste. By the age of 45, I had reduced my consumption to one or maybe two beers at a sitting, because being buzzed on alcohol with advanced MS isn’t fun.

A couple of years later, as my disease spread to my upper body, I struggled to lift a mug of beer, so I eschewed the craft beers on tap and settled for drinking out of a bottle again. Recently, even that task became too much. I tried sipping through a straw. Don’t do it—ruins the experience. Next, we switched to tiny glasses that I carried with me when we went out. Kim would order a beer and pour me a splash.

A new brewpub recently opened up in our neighborhood, and it's a beauty. (Yes, further evidence of my charmed existence.) The first time we visited Foulmouthed Brewing, Kim and I decided to order the sampler rack of four-ounce beers so we could try each of the six brews. After a few labored sips, I lost interest. Too much work. Kim offered to raise the glass to my mouth for me. I shrugged my shoulders.

“Sure.”

This turned out to be a more complicated procedure than we had anticipated. Kim had to hold the glass at the perfect height, distance into my mouth, and angle. But the task that took us the longest to master was Kim raising the bottom of the glass so that I received just the right amount of beer each time. Too little – unsatisfying. Too much – a variety of problems. Things didn’t go well that first day, but we are persistent if nothing else. As much as I would’ve rather stayed home and watched reruns of Gilmore Girls, we dragged ourselves back to that damn pub and tried again, and again. We got the hang of it, even with full-sized mugs.

I was on the verge of giving up on beer, but now I’m back in the game. I’m good for maybe eight ounces per sitting, but that still makes me happy. So, if you find yourself at a Portland area restaurant, bar, or brewpub, and see a beautiful lady feeding a wheelchair guy his beers, don’t feel bad. Think about how lucky that guy is to still enjoy a locally brewed craft beer, hands-free.

Tuesday, July 5, 2016

Happy 30th Wedding Anniversary, Kim

I couldn’t decide what to get you for our 30th. Because we’re leaving in a couple days for a camping trip, flowers didn’t make sense. You’re not big on jewelry (thankfully). I considered a gift certificate to the tattoo parlor down the street, so you could have my likeness emblazoned on a private place, but that seemed presumptuous. Yes, we’re going to a nice restaurant tonight. That’s hardly a gift from me to you, however.

I’ve decided to give you something every girl wants – a blog post in your honor.

July 5, 1986

We very much wanted the ceremony in my parents’ backyard but had the church available in case of inclement weather. With scattered showers predicted, we took a chance and decided early in the day to go with the outdoor venue.

It rained, but only lightly, and there was no wind. The umbrellas in the audience added color. We had scheduled two songs, but cut one of them because the equipment was getting wet. We whispered back-and-forth that we would move the receiving line inside to the reception hall.

As soon as the wedding ceremony finished, the rain stopped. We went back to the original plan for the receiving line and even posed for pictures outside.


During the limo ride to the reception hall, we took care of a bottle of champagne. That put us in the right mood for the party that ensued. Our friend David King sang at the wedding reception. When our daughter gets married later this summer, David is flying in from Las Vegas for an encore performance at her wedding.


A couple days later we left Lincoln behind for our honeymoon, which ended at our new apartment in Cleveland, Ohio. The rest is history.

Kim, so much of what is good in my life comes from being married to you. Your outlook, your energy and enthusiasm, your positivity and your love have made these 30 years an unbelievable experience. I wish our lives were not so difficult, but I can’t imagine going through any of it, the good times or the bad, without you.

I love you.


Tuesday, June 21, 2016

Google Voice Access

Regular readers of this blog know I’m all about voice control. I use Dragon NaturallySpeaking instead of a keyboard. Click here to see what I’ve installed for voice controls inside my house. Now I'm moving on to my mobile devices. This short video demonstrates Google’s new Voice Access feature:


Or, click here to watch the video on YouTube.

I can’t let brand loyalty cloud my purchasing decisions. Sorry Apple. We had a great run. You even made a software change at my request (click here). I chose you a few years ago because you had the best accessibility suite, but that’s no longer the case. Sure, let’s stay in touch. Who knows, maybe a couple of years down the road we can give it another try.

Yes, Siri and OK-Google do some nice things. They obey a few, higher-level commands. But with the next revision of Android software, Android N, Voice Access will respond to lower-level voice commands too. And, if a developer’s app doesn’t integrate well with this feature, then every clickable point on the screen will have a number next to it, and all I have to say is “tap 3,” for example, and that will be equivalent of touching the screen with my fingertip. Voice Access can be left on at all times, providing truly hands-free control of mobile devices.

The software is in beta testing at this point, and downloads of the beta app are not allowed, unless you signed up a few weeks ago, which I did. So, in the very near future I will become an Android guy instead of an Apple guy.

It sucks to have MS, but my timing has been fortuitous. When I was diagnosed in 2001 the internet had just become a powerhouse. I was able to research my disease and connect with other MS patients. In 2008 when I needed a wheelchair, I found the iBot. Now that my hands don't work well, voice control technology is taking off.

Of course, I could have been luckier. Five, or ten, or twenty-five years from now, people will say, “I’m glad I got diagnosed the same year they found a cure for MS.”

And won't that be a wonderful thing?

Wednesday, June 8, 2016

When I Encounter Mothers

People who are able to walk don’t think much about their legs, and I don’t think much about my wheelchair. My mind is occupied by a million other things. With a few exceptions, I go about my day as if I’m not riding in an elaborate metal and plastic contraption.

But I am. I’m reminded of this when I pass by a mirror, look at a photograph of myself taken in the last eight years, or approach a mother and her young offspring. When I encounter a Mom (not so much a Dad), she collects her brood and pulls them to safety. I can only imagine her thought process. Two possibilities come to mind:

Possibility 1

Maternal instinct, from an ancient part of her brain, screams, danger … situation uncertain… must protect children at all costs, and she gathers them close. Then, from a more evolved part of her brain, social awareness kicks in, mustn’t make wheelchair user feel bad… smile at him... yes, that’s the right thing to do.

Possibility 2


Maybe she doesn’t succumb to base instincts so easily. Maybe she thinks, nice man approaching in wheelchair… my snotty-nosed brats are going to get in his way… must avoid embarrassing situation… maybe if I smile he will forgive our intrusion into his space.

My Reaction

What goes through my head at these times? I usually think, adorable kids ahead ... plenty of room for me to pass by them… I hope their mother doesn’t make a big deal… oh well, too late… now she’s smiling at me…hmm, she’s kind of cute… yeah, I’ve still got it.

This blog post devolved quickly. Let me try to bring it back around.

A mother's reaction probably depends on the circumstances. If she sees me coming from a distance, her more cerebral, social skills have time to manage the situation. If I turn the corner and surprise her, however, Mom's powerful and fast-acting survival instincts may shoot to the surface before her empathetic self takes over. I get that.

And the baby daddies – they’re just lucky I’m happily married.

Sorry, couldn’t help myself.

Wednesday, June 1, 2016

My Connected Home – This Is How We Did It

In my previous post, I demonstrated the voice-controlled automation in my home. In this post, I go into some of the details of how we set up the system. It's complicated stuff, however, so only attempt something similar if you have the skills and patience or know someone who does, which includes anyone under the age of 30.

The most important thing is–and you might want to write this down and stick it on your Amazon Echo–DO NOT CALL MITCH WHEN THIS DOESN’T WORK.

Hardware Requirements

It starts with Amazon Echo, which can be purchased in several configurations. The original Echo has an onboard speaker. If you already have a Bluetooth speaker that you like, or if you can be satisfied with a very small speaker, you can buy an Echo Dot instead. We went with a full-fledged Echo in our living area and a Dot in our bedroom. Note that they work together. I can speak to either the Echo or the Dot and control any of my devices.

Echo Dot: $90



Echo doesn’t work directly with many home devices. It usually requires an interface, and these generally take the form of a smart home hub. We chose the Samsung SmartThings hub because it has so much flexibility.






But SmartThings doesn’t interface with my Lutron shades, so I had to purchase a second hub to control those functions.






For each of our two televisions, I purchased a Logitech Harmony hub. Echo doesn’t interface directly with that hub, but SmartThings does.




Next, I purchased smart switches for all my lights. The SmartThings hub communicates with the switches via a radio technology known as Z-wave. I used four types of switches:


Because we would be adding a lot of traffic to our old wireless router, I purchased a new one:




Labor

An electrician who owed me a favor installed my switches. For the number of switches demonstrated in the video, plus a few more, an electrician would charge between $500 and $700.

Software

The software is all free. I used the following:

On my PC

         Loaded Logitech Harmony app

         bookmarked Amazon Alexa website

         bookmarked IFTTT website (IF This Then That)

On my iPhone and iPad


Programming and Implementation

This is where the fun began.

Light switches

I used the SmartThings app on my phone to pair with and name each light switch. I used the Amazon Echo website to link my Echo and my Dot with the SmartThings hub. Then, I started talking to my lights.

Lutron shades

I used the Lutron Caseta app on my phone to name and pair up with my motorized shades. I went to the IFTTT website to pair my Amazon Echo devices with the Lutron Caseta hub. Then, I started talking to my shades.

Entertainment system

I followed the directions that came with my Logitech Harmony hub to set up my entertainment systems in the living room and bedroom. I set up commands in the SmartThings hub which mimic the commands in my Logitech Harmony hub because Amazon Echo does not speak directly to Harmony. I went to the Amazon Echo website and paired with the SmartThings hub again. Then, I started talking to my entertainment systems.

Final Thoughts

Amazon Echo is currently designed to deal with things like light switches and not with things like television channels. So I had to play with the names I chose for each function. For example, when I tried to make up a command called “channel 6” it didn’t work. When I renamed it “switch 6” it worked fine.

Consider this a high-level summary of how this setup works–by no means enough information for someone to build a system. A technical mind is required in order to pull something like this off. And obviously, the financial costs are significant.

Good luck!

Tuesday, May 31, 2016

My Voice-Controlled Home

Leading a contented life with worsening disability depends, to a large extent, on problem-solving skills and resources. Can’t walk? Get a wheelchair. Difficulty holding eating utensils? Modify those utensils. Losing function in your arms and hands? Use your voice instead. Watch below.


If you are reading this post via email, click here to watch the video.

A big thanks to Nick Doucette, my future son-in-law, for all his help on this project.

In tomorrow's post, I’ll go into some detail about how we set this all up, fully cognizant of the fact that only a handful of you will care.

Monday, May 23, 2016

The iBot Lives!


This is the news we've all been waiting for. A little company called Toyota will partner with DEKA to develop and manufacture the next generation of iBot. Read the press release here, and be sure to watch the video embedded in the story.

To see video of my iBot in action, click here.


Tuesday, May 17, 2016

Travis Mills – Tough as They Come

Travis was one of those kids with a gifted body and an adventurous mind. A high school football legend, he was gregarious, kind, and fun-loving. Although bright, he had no interest in being a scholar. After a short stint at a community college, he joined the Army – a perfect outlet for his considerable energy, drive, and patriotism.

When Travis came home to his wife and daughter from his third tour in Afghanistan, he did so without his arms and legs – one of only five quadruple amputees to survive the Iraq and Afghan wars. Within months he strapped on three and sometimes four prosthetics and got back out in the world. Today, four years removed from what he calls a “bad day at work,” he lives only an hour up the road from me. He has become a motivational speaker and chairs the Travis Mills Foundation.

I meet a lot of inspirational people in my circles. Most of them have MS. I’ve even been called inspirational once or twice. Travis takes that to another level.

He co-authored a book about his life, called Tough as They Come. I read it, or rather listened to him narrate it on my Amazon Echo. Incredible story. Great read.

I wouldn’t characterize myself as Tough as They Come. I’m probably More Resilient Than Average. A new title for my memoir?

My brother, Tom, runs a company, Crooker Construction. He lined up Travis to be the surprise speaker at a companywide meeting. Knowing I was a fan, Tom invited me to the talk, along with my other brother, Andy, and our wives, Diane, Karen, and of course Kim. When I arrived at the venue, Andy and Tom ushered Kim and me into the green room, where Travis was stashed away before his turn at the podium. (That's Travis with the fake legs that work and me with the real legs that don't.)

We hit it off immediately – comparing notes about some of our favorite adaptive devices, like my iBot wheelchair and his prosthetic left arm. As I spoke with him, I could feel the positivity and energy, and it was contagious.

Travis captivated the audience. Of course his story is compelling, but he tells it skillfully, and he uses humor like a pro. At one point he dragged my brother Andy up on stage to play the straight man in one of his good-natured jokes. Throughout the talk, and I expect this to be the case in his everyday life, Travis never uttered a word of self-pity.

He gave me a copy of an award-winning documentary about his life, called Travis, a Soldier’s Story. If you can watch that without shedding a tear … I couldn’t.

I’m not easily impressed by “you can do anything you want if you just put your mind to it” stories. But Travis’s approach is so engaging I can’t help but be moved, and inspired. I recommend Travis’s book and documentary to anyone who needs a little encouragement in their life.

Monday, May 9, 2016

Letting Go (part 2 of 2)

In part one of this two-part post, I wrote about my love of handcycling, and how MS progression forced me to let it go. Never again will I feel the joy of cruising down a bike path under my own power, breeze on my face, muscles in my arms aching, blood pumping. It’s better that I experienced these sensations and lost them, however, than never to have experienced them at all. At least that’s what I keep telling myself.

I considered donating the handcycle to an adaptive sports organization, but Kim and I have a wish list of disability-related purchases we would like to make ourselves, so we decided to sell. Our advertisement explicitly stated that we would not ship this product – pickup at our house required. We needed to be sure the bike was right for whoever would be purchasing it. The last thing we needed was an unsatisfied buyer halfway across the country, or worse yet, someone who meant to resell the cycle for profit that we left on the table in good faith.

Kim and I had sold disability-related equipment online before and had dealt with scammers. Click here to read about it. Because of that experience, we planned to treat this sale dispassionately. No matter how compelling the story, we would remain skeptical.

Then Ray emailed us. He expressed an interest in buying the handcycle for his 13-year-old grandson, JJ. Ray and Mark (JJ’s father) would drive up from Massachusetts on Saturday to complete the purchase.

Upon arrival they inspected the handcycle, and it exceeded their expectations. That was enough for Kim and me. We would have been pleased with the transaction. Then Mark said, “It’s going to be a surprise for JJ, my son. He has no idea we’re getting this handcycle for him.”

“Tell me a little about JJ,” I said.

Both father and grandfather gushed. JJ was born with caudal regression syndrome. His lowest three vertebrae did not develop in vitro, resulting in limited movement in his lower extremities. He’s gone through two major back surgeries this year – the first to have growth rods inserted into his spine and the second to adjust those rods. Through it all, he has remained upbeat and positive. As they spoke, it became apparent to me that the affection these men have for JJ is not born of pity, but of admiration and love.

“We’re going to take a video when we give him the bike later today,” Mark said.

“Can I get a copy?” I asked. We exchanged contact information, and a friendship between families was born.

I took the photos and videos Mark sent me and put together this little summary of how JJ's day went.
note: if you are reading this blog post via email, click here to watch the video

I’ve written how the anticipation of losing something can be worse than the loss itself. For example, when I sensed my days of driving an automobile were numbered, I worried about how I would know when to stop and what it would be like after I did. But on the day I came home and cut up my driver’s license, I felt an overwhelming sense of relief, and I never looked back.

It didn’t work that way with the handcycle, though. I hadn’t used it in five years but had held onto it in the desperate hope that one day I might be able to improve my health enough to use it again. When I put the cycle up for sale, that signified the end of such hope. I felt only sadness, not relief – until JJ came along. Now I’ll remember this transaction as much for what he gained as for what I lost. Cycle of life?

Thanks, JJ, I hope you get as much joy out of that handcycle as I did, and more.

Tuesday, May 3, 2016

Letting Go (part 1 of 2)

People say you should never give up. Once in a while, however, I find that I have to let go. Last week I let go of my handcycle.

Growing up in Lincoln, Maine, I rode my bicycle everywhere. My friends and I started out with single-speed bikes. We built jumps out of cinderblocks and plywood and launched ourselves skyward. As teenagers, we graduated to 10-speed bicycles and went for long rides to neighboring towns. But once we got our driver’s licenses we couldn’t be bothered with a child’s mode of transportation any longer.

When Kim and I, in our late 30s, bought our first house in southern Maine I thought I might take up bicycling again. I bought a hybrid bike that I could use on both trails and the road. I took it out a few times but noticed I didn’t have enough strength in my legs to do what I wanted to do. Not long afterward I was diagnosed with multiple sclerosis.

A couple of years later I saw an advertisement for a handcycling symposium to be held at the University of New Hampshire. Kim and I attended, and I fell in love with the activity. I bought my first and only handcycle that same day.

I used to exercise early in the morning. When I acquired the handcycle, we lived in Cape Elizabeth, and every day before work I would either ride my handcycle or go to the gym. On my cycling mornings I would sometimes start from my house and wind through the wooded roads of Cape Elizabeth. It was not unusual for me to startle a whitetail deer or two. On other cycling mornings I would lift the bike into the back of my pickup and drive a mile or so to a neighborhood in South Portland called Knightville. From there I would ride down the Eastern Trail to Bug Light Park. Depending on the time of the year I might catch the sunrise over the ocean or at least watch the boats leave the harbor for a day of fishing. If I still wanted to get more miles in, I would ride around and around the loop in Knightville, passing by my future home on each lap.

When we moved to Scarborough, I found new routes to enjoy. I could ride to Higgins Beach, Prout’s Neck, or if I had time all the way to Bug Light in South Portland. But I also enjoyed rides in my Scarborough neighborhood.

With Mother’s Day, 2008, approaching, I had no idea what to get Mom. She was 74 years old, a quadriplegic, and going blind from age-related macular degeneration. At the last minute, an idea popped into my head. I so enjoyed my handcycling rides around the neighborhood that I decided I would try to bring my mother along, virtually. I put together this video for her: (if you are reading this as an email, click here to go to the original post in order to watch the video)

video

That turned out to be the last Mother’s Day present I would give her, as she passed away later that year.

Over the years my arms weakened and my rides became shorter. The summer we moved from Scarborough to the Knightville section of South Portland, 2011, proved to be my last summer of handcycling. There I was, returning to the very spot where I had started my handcycling adventures, and I no longer had the ability to ride. The handcycle went into storage.

Each year I considered selling it, and each year I decided not to. Selling would mean giving up, and I'm not supposed to give up. I thought, “If this treatment works (whatever treatment I was on at the time), even a little, I can get back on that handcycle.” But a few weeks ago I finally had to admit that, barring a medical miracle, I’ll never ride  again. I put it up for sale, and the new buyers picked it up on Saturday morning.

It was an emotional day. I didn’t feel guilty – like I was giving up. I knew it was about acceptance and moving on with life. I've been through this drill many times already. But each one of these moments, each one of these losses, takes a little part of my soul with it. The mood of the day was tempered, however, by the story of where my handcycle was going, and who would be riding it in the future.

Click here to see part two

Tuesday, April 26, 2016

Singing in the Shower

Despite my overwhelming medical problems, I don’t exhibit any symptoms of depression. Shouldn’t I, though? I sometimes wonder if there’s something wrong with me – if I am in denial, or if I’m just crazy. I keep on the lookout for despair, expecting to see it around the next corner, but thankfully I never do.

We have a radio in our shower, and I often find myself singing along to the oldies station.
Imagine there's no heaven
It's easy if you try
No hell below us
Above us only sky
Imagine all the people
Living for today...
 
This singing happens organically, spontaneously. I don’t plan it. Is it an expression of my inner happiness, or is it something I subconsciously do to induce happiness? Is it a cause or an effect? Doesn’t matter.
My child arrived just the other day
He came to the world in the usual way
But there were planes to catch, and bills to pay
He learned to walk while I was away
And he was talking 'fore I knew it, and as he grew
He'd say, "I'm gonna be like you, dad
You know I'm gonna be like you.…" 
Sometimes I realize that I’m singing and reflect upon it. I become happier still about the fact that I remain capable of experiencing spontaneous joy despite my circumstances. Strong medicine, this singing in the shower.
Aruba, Jamaica, ooh I wanna take you to
Bermuda, Bahama, come on pretty mama
Key Largo Montego, baby why don't we go
Ooh I wanna take you down to
Kokomo, we'll get there fast and then we'll take it slow
That's where we wanna go, way down in Kokomo.…
 
As long as these old songs continue to have this effect on me, I think I’m in great shape. If I stop singing, that’s when I’ll worry. 
Every time I look in the mirror
All these lines on my face getting clearer
The past is gone
It goes by, like dusk to dawn
Isn't that the way
Everybody's got their dues in life to pay… 
I am the world’s worst singer. For that reason, you’ll never hear me sing unless it's in the shower, in which case I may feel compelled to ask you what the hell you’re doing in my shower. 

Wednesday, April 20, 2016

My Year on Biotin

If you’ve read this blog, you know the drill. I have an incurable disease. Cause unknown. There is no treatment. Fifteen years in, I require a power wheelchair to get around, and I’m completely dependent on others, yada yada yada.

Despite the fact that there are no FDA-approved treatments for primary progressive multiple sclerosis, I can’t help but experiment. Here's what I’ve tried so far:

Novantrone (2001 – 2002): Intravenous infusion. A cancer treatment with potentially dangerous cardiac side effects. Used for one year. Didn’t help.

Copaxone (2002): A painful, daily, self-injection. Used for six months. Didn’t help.

Oral Methotrexate (2002 – 2003): A pill. Used for one year. Didn’t help.

Low Dose Naltrexone (2004): A pill. Used for three weeks. Felt worse, not better.

Rituxan (2005 – 2009): IV infusion. Worked well for the first year. Worked less well for second. Didn’t work for third or fourth year.

CCSVI treatment (2010, 2011): Procedure similar to balloon angioplasty. Had one in 2010 and another in 2011. Neither helped.

Intrathecal Methotrexate (2012 – 2015): Spinal tap injections. Used for two years. Worked for the first year. Didn’t work for the second year.

In early 2015 a drug called Biotin burst onto the scene. Specifically, high doses of Biotin showed effectiveness in early trials for primary and secondary progressive MS, forms of the disease that have no FDA-approved treatments. In April of last year, I found a compounding pharmacy to provide me with 100 mg capsules. I’ve been taking three a day. You can read my other Biotin posts here. Having completed one year of treatment, this is my conclusion:

Biotin (2015 – ): A pill. Used for one year. Didn’t help.

This year I’ve noticed disease progression primarily in my hands. A couple of years ago I thought my left hand was essentially useless. Today, that’s where my right hand is, and it’s my good one. My left hand sits in my lap all day long, contributing almost nothing to my existence.

Biotin research continues, but I have a sneaking suspicion it’s not going to be the answer we had hoped for. At this point – one year without success – I would normally terminate a treatment. I’m not quitting Biotin right now, however. There’s nothing else to try, and treatment seems harmless. I’ll continue for a while in the hope that it takes more than a year for this drug to kick in, as unlikely as that seems.

Or, I may stop at any moment. I don’t know. I just don’t know.


Tuesday, April 12, 2016

In a Previous Life …

Marco and I go way back. We met as freshmen chemical engineering students at the University of Maine in 1982 and have been close ever since. I worked hard and earned top grades over those four years. Marco worked harder and got even higher grades. Later, we were both employed as engineers at Lincoln Pulp and Paper. I put in long hours, and my career progressed. Marco put in longer hours, and he became the mill manager. Today, he is a VP at an international paper company, and I couldn’t be happier for him.

Marco and I see each other infrequently these days. But we recently met for breakfast at Q Street Diner, a throwback, greasy spoon diner maybe 300 yards from my house.

The conversation could have gone in either of two directions. We might have reminisced about all the fun we had in our 20s and 30s snowmobiling or hanging out with our friends in Lincoln. But on this day, the discussion bent toward business, something he’s still involved in and I’m not.

Marco is overseeing the expansion of a mill in Woodland, Maine – an investment of well over $100 million. He is one of the most knowledgeable pulp and paper minds around. Me? Although I lived that industry for 13 years, I hadn’t had an opportunity to talk pulp and paper much since I left the Lincoln mill 16 years ago. Over breakfast we began to discuss the basics of his project and his new position. I proceeded cautiously at first, unsure of my ability to carry on an in-depth conversation on these subjects. Then the strangest thing happened. A part of my brain that had been ignored for so long suddenly awoke. Neurons that had lain dormant for years began to fire, feeding me tidbits of information I would never have imagined I still possessed.

I asked probing questions and used technical jargon. It all came rushing back, and I was thrilled with my powers of recall.

“This is fun. I haven’t talked pulp and paper in so long,” I said.

“You’re doing a pretty good job of it,” he replied.

What a satisfying breakfast. To top things off, Marco picked up the tab.

In a previous life, I defined myself in large part by the work I performed. Because of MS, that identity is gone. But I don’t lament the loss. What good would that do? I still have a meaningful life, and I’m determined to make the most of it.