Friday, August 26, 2016

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

Kate Milliken, my friend and the founder of, 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.


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.