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.

Happy 30th Wedding Anniversary, Kim

I couldn’t decide what to get you for our 30^th. 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.

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?

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.

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.

Amazon Echo: $180

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.

Samsung SmartThings: $79

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

Lutron Caseta bridge: $80

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

Logitech Harmony hub: $100

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:

 GE Z-wave on off switch: $35 each

 GE Z-wave dimmer switch: $40 each

 GE Z-wave three way on off kit: $59 each

 GE Z-wave three-way dimmer kit: $63 each

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

 Netgear Nighthawk X6: $279

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

Loaded Logitech Harmony, Lutron Caseta, Amazon Echo, and SmartThings apps

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!

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.

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.

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.

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.

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)

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