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)


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.

Wednesday, April 6, 2016

My Pet Peeves

I didn't write an essay this week, so I thought I would roll out one of my favorite old posts. In this lighthearted video, I address a few of my  pet peeves. Enjoy.

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

Tuesday, March 29, 2016

Problem Solving

Sleeping is a pain in my ass, literally. At least it was until a few days ago.

For a big guy like me, spending 16 hours a day sitting on my butt requires a good wheelchair seating system, which I have, thanks in large part to my occupational therapist, Maren. For those other eight hours a day, my memory foam mattress always provided a comfortable night’s sleep, until it didn’t.

It’s a lot to ask of a mattress, to keep someone comfortable when that person doesn't move his butt even an inch all night long. Typically, people in my situation employ sophisticated solutions, and sophisticated solutions cost money. If the pain in my butt had manifested itself as an active bedsore, then I could have leaned on my insurance company. But I decided to act proactively, unlike my insurance company, and get an advanced mattress system in place now.

The state-of-the-art is an air-filled mattress with a controller that continuously varies the air pressure. If my butt can’t move, then I need the mattress to move instead. That costs about $2500. I researched my options and found an alternative. A few manufacturers make a mattress overlay, which is several inches thick and has this same variable air pressure control. I wondered how much that might cost. Maybe $500? A reasonable guess, but no. How about $50, 4½ stars, 331 reviews on Amazon? Click here to see it.

I ordered one, and because I have Amazon Prime, it arrived two days later. I’ve been using it for a few days now, and the pain in my ass is gone. I can barely feel the pressure changes going on underneath me, and I would characterize it as more soothing than annoying.

And the kicker? It’s portable. So I’ll be bringing this puppy with me whenever I travel. Heck, I’ll probably order a second one just so it will be more convenient when we pack up.

Sometimes, I stumble upon highly effective, low-cost solutions. It’s rare, but it feels good in more ways than one.

Some folks might consider situations like this and say, “Look at the crap I have to go through.” I prefer to consider situations like this and say, “Look how proficient we've become at solving problems.”

Wednesday, March 23, 2016

The Art of the Deal

Everybody loves to get a good deal. Satisfaction might come from the shopping or negotiating process, or it might be the result that matters, or both. I’m just as happy whether I find a deal or Kim finds one for me. She isn’t that way, however. Her satisfaction comes from the hunt and the kill. The feast afterwards? She could take it or leave it.

The most common phrase Kim’s father has uttered to me over the past 36 years has been, “Mitchell, can I ask you a question?” He never just asks the question. He always asks if he can ask, even if the asking is rhetorical.

But it’s his second most common phrase that is relevant here: “Mitchell, guess how much I paid for these shoes?” Or something along those lines. So, Kim comes by it naturally.

In the summer of 2015, Kim bought a few items at thrift stores and sold them on eBay – mostly pocketbooks and shoes, but a little bit of everything. I shook my head. How could this be fun for anyone, I wondered.

She met with some success. It felt good, so she did it more frequently. By October, I asked her, “How much money are you making at this?”

“I don’t know. I’m sure I’m making something.”

“Wait a minute. You don’t know how much money you’re making?”

“I’m not doing it for the money. I’m just having fun.”

“Okay. I’m going to start tracking your finances for you, and I’ll produce a report every month analyzing your little business.” This was my idea of fun.

“Knock yourself out.”

I determined that Kim was making hundreds of dollars a month of clear profit. Today, she has over 250 items listed on eBay, which means she has over 250 items of inventory in our house. She makes 60 to 80 sales per month, which means 60 to 80 times per month she wraps something up, places it on her kitchen scale, prints her own postage label, affixes the label to the package, and drops it off at the nearby post office. And it means 60 to 80 times per month she purchases something at a thrift store which is worth much more than what she paid. She gets a kick both from buying items at a bargain and from selling them at a significant profit.

I was worried about Kim. She spent so much time taking care of me and molding the minds of those fifth through eighth graders at her middle school. She didn’t have a hobby that she was comfortable spending significant time on until now. As a bonus, this hobby of hers doesn’t cost money. It makes money. We decided to use her profits only for fun items or activities. So far we’ve purchased a robotic vacuum cleaner, which eliminates one of her less fun chores. We went on a trip to Boston for dinner, a show, and a night in a hotel. We gambled (and lost) and spent two nights at Foxwoods. In April, we’re taking in a Red Sox game and spending another night at an upscale hotel in Boston.

Works for me. Works for Kim.

To see Kim’s eBay store, click here.