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.