Thursday, July 31, 2014

I am Profiled in “Everyday Health”

Everyday Health is a major online magazine. People such as Dr. Sanjay Gupta and Meredith Vieira are contributors. I wasn’t interviewed by either of them, but the magazine did have one of their fine staff writers, Jennifer Anderson, put together a short article about me. Check it out by clicking here.

Tuesday, July 29, 2014

Conveniently Incompetent

When I last updated you on my overhead lift system reimbursement from Anthem, I wrote: “My insurance company indicated they will reimburse all but $700 of the $12,000 product cost. I haven’t seen that check yet, and I won’t believe it until I do.”

I was told by Anthem that all I had to do was submit a one-page claim form, and I would get my check. That’s a funny one.

Just for good measure, when I sent in the claim form I also sent the quotes I had received for the product, the invoices I had received for the product, and a letter from Anthem indicating that the product was preapproved, and at the higher in-network reimbursement rate.

Weeks went by and I heard nothing. I checked their website frequently until one day I saw that my claim had been denied. I was annoyed, but not completely surprised. I assumed there was more paperwork that they would need. So I called them and asked why my claim had been denied.

“The product you purchased is not medically necessary.”

“I am holding a letter from you dated June 6 that says the product is medically necessary, and that I will be reimbursed at the in-network rate.”

“Can I put you on hold?”

“Yes you can.”

About 10 minutes went by.

“It appears you are correct. The claim should not have been denied. I will put it back through the system and you should hear from us in 7 to 10 days.”

In about 10 days I saw online that the claim had been approved. The next day I received a rejection letter via snail mail that I knew was obsolete. But the interesting thing was their reason for denial.

“Our in-house physician has examined this claim and determined that it is for an experimental product. Anthem does not reimburse for experimental products.”

This was an entirely different, yet equally invalid reason for denying my claim.

About a week later I received full payment for the overhead lift system, cashed the check, and paid off my credit card. All is well that ends well.

I posted about this fiasco on Facebook, and I received many comments along the lines of, “That’s how they operate. They deny, deny, deny, and only if you are persistent do you beat them. It’s their modus operandi – their standard operating procedure. They hope you give up before they have to pay.”

I don’t think this is true, exactly. I can’t believe that managers and employees have staff meetings and training sessions where they teach the fine art of deception and lying. These are professional organizations and presumably decent human beings. Yet, it sure looks like they throw roadblocks up just hoping that you’ll trip on one of them, or give up altogether.

What we have here is an organization being conveniently incompetent.

I think they choose not to invest in training their claim processing personnel to be as competent and efficient as they could be, and make little effort to provide them with state-of-the-art claims management software. There would be meager return on that investment. Patients are not their customers, in the normal sense. The insurance company’s customers are the organizations who purchase their group policies. Most of these organizations make their purchasing decisions based on cost and coverage, with little regard given to claim processing service. So, if investing in better service doesn’t win them more business or in any way contribute to the bottom line, management in these organizations seems content with poorly trained personnel who tend to make copious errors, predominately in favor of the insurance company.

That’s how I think these things work. What do you think?

Tuesday, July 22, 2014

Interacting with Wheelchair Users: A Memo

ali edwards
My friend Andrew McLaughlin recently posted the following status on Facebook, after visiting our home town of Lincoln, Maine, during its homecoming celebration:
“While having lunch at the Knights of Columbus BBQ after Saturday's parade, with Kimberly, I noticed a Lincoln icon sitting alone, in his motorized wheelchair, at the end of a table. He was struggling a bit while cutting up his chicken, so I decided to speak with him and offer some assistance. As I approached former Lincoln police officer Harold Woodard and introduced myself, he smiled and said that he remembered me. We talked at length... After a while I did manage to ask if I could help him by cutting up his chicken for him, not really knowing how a proud man like Harold might respond. He looked at me with caring eyes and said sincerely and with a little surprise, ‘I would really appreciate that’. It made my day to spend a few minutes with a local icon with such integrity and character. The world could use a few more Harold Woodards.”
I’m not acquainted with Mr. Woodard, but he seems like a first-class individual. This blog post, however, isn’t about him. It’s about wheelchair users in social situations, and how well Andrew handled it.

I am able to manage multiple conversations in the comfort of my home or across the table at a restaurant. But it’s so much more difficult at larger gatherings. Wheelchair users are simply unable to mingle nonchalantly like walking people do. The unwieldy piece of equipment we are attached to acts as a barrier – physically, socially, and psychologically. Space is often tight amongst the banquet tables, dance floors, and speaker’s podiums, etc. Therefore, it is preferable for us to remain somewhat stationary, and let the people work their way to us. It’s as if we are a receiving line of one. At least this is how we would like it to work. But more often than not the other socializers act as if they didn’t get the memo, which they probably didn’t.

Please consider this blog post as the memo.

What are the social and psychological reasons that people avoid approaching wheelchair users? I could spend a series of posts delving into this phenomena. Some reasons are: a fear of saying the wrong thing, a perception that wheelchair users are bitter and don’t want to socialize, uncertainty about whether to stand or sit when speaking to a wheelchair user, and fear that the wheelchair user will resent offers of help. Because of these and other barriers, many people are subconsciously disinclined to walk up to us, like Andy did with Mr. Woodard, to ask if we need any help and to strike up a conversation.

Mr. Woodard’s visit wasn’t the first time Andrew behaved admirably in this type of situation. Andrew and I were both attending a Fourth of July party this year at our friends Tim and Lynn’s house (Lynn, is it okay to call it Tim and Lynn’s house now?). In the normal comings and goings at a gathering with twenty people or so, some of whom know each other very well and others of whom are mere acquaintances, I found myself sitting alone for a moment. Andy sensed that and plopped himself on the barstool in front of me, asked me if I needed any help, and engaged me in conversation for ten minutes.

My momentary solitude at that party was not a big deal. It hadn’t gone on long enough that I felt lonely or conspicuous. But Andy took note of it, and took action. The next time you’re at a large gathering and there is a wheelchair user present, remember to treat the individual like a receiving line of one. But do more than shake hands and move along. Strike up a conversation. I guarantee you’ll both benefit from it.

“The world could use a few more Harold Woodards.” I don’t doubt that. But I would add this: the world could use a few more Andrew McLaughlin’s too.

Tuesday, July 15, 2014

The Eastern Sky at Sunset

2014 07 139 For the second summer in a row (click here for last summer’s story), Kim and I spent a couple of nights at a lake in our hometown of Lincoln, Maine.

My brother Andy’s mother-in-law, Joan, owns a lovely summer home on the lake known by locals as the Big Narrows. Although the shoreline is probably more than 75% built, the lake maintains a pristine quality. It was not uncommon to be regaled by loon calls, especially in the morning hours.

As usual, I wanted to travel with both of my wheelchairs, because the iBot is best suited for some situations, and the Invacare for others. When Kim and I arrived at the lake house we quickly surveyed the entrance options. I was already in my Invacare – it is more comfortable for riding in the van – so I didn’t want to transfer to the iBot if it wasn’t necessary. We brought a 5 foot portable aluminum ramp. If the ramp had been 6 feet long it would have worked perfectly. Kim and Karen went to the shed and found a piece of plywood and an old yellow traffic sign that said, “Keep to Right.” This made for a wobbly, but acceptable ramp. I was in the house in no time.

2014 07 104 In the early evening we sat on Joan’s deck and looked out over the water, facing due east. There would be no spectacular sunset from this perspective. But I became entranced by the natural colors and their sometimes stark and other times subtle contrasts. The calm, gray-blue waters constituted the lower portion of my field of vision. As I raised my eyes I was treated to the vibrant greens of the mixed hardwood and softwood ridge on the far side of the pond. This constituted the center portion of my field of vision. The top half of my view – a nearly cloudless sky – was lively and ever-changing. The eastern sky is the house of the rising sun, but is overlooked at sunset. On this night, however, it was the eastern sky that stood out. Before the sun faded, this sky was a canvas splashed baby blue, interrupted only by occasional brush strokes of soft, white cotton. As the sun dropped lower, the eastern sky flaunted a gradation of colors from light blue at the top to deep purple at the horizon. In the feeble sunlight the thin clouds almost glowed in the foreground, as if to remind us that they were part of our world, not the infinite space above them.

2014 07 146 As the sun sank below the western horizon, the moon rose directly from the East. On that night we were treated to something called a supermoon, a full moon that reaches its closest orbit to the earth and thus appears larger in the sky. The lunar glow was amplified as it reflected off the perfectly calm and dark waters. Every time I looked at the sky that evening, the portrait evolved, and each viewing was as spectacular as the one before it.

The spare bedroom situation, on the first floor of the lake house, was about as good as it gets. After a tight squeeze through the doorway, there was ample room on both sides of the bed for maneuvering. But we had become spoiled by my overhead lift system, and transferring me into the bed was a bit of a chore, although at no point did I feel that I was in an unsafe situation.

I also longed for my head and foot adjustable bed. Lying flat on my back all night was uncomfortable, but I managed to get a minimally acceptable amount of sleep both nights.

2014 07 138 On Friday we visited with old family friends and lounged around the deck of the lake house. The weather was ideal for someone with MS. There was bright and abundant sunshine, but low humidity and temperatures in the 70s.

On Friday night an old high school friend of mine came by in his pontoon style party boat. Although everyone was optimistic that I would be able to get on the boat with my iBot wheelchair, I kept expectations low – my survival instinct kicking in. However, by using the 5 foot aluminum ramp I was able to board the party boat at essentially no risk. We started cruising slowly around this lake where I had spent so much of my childhood. Many of my friends and relatives had camps on this lake, but most of them had changed ownership in the past thirty years. It was now a much more affluent lake than it had been in my youth.

Scott, the captain of the party boat, was our guide. A couple of minutes into the cruise I realized that I was facing the wrong way – toward the back of the boat. There wasn’t room for me to turn the iBot around in standard mode. The only hope would be to rise up into balance mode, which provides the tightest turning radius. So I did just that, to the oohs and ahhs of several others on the boat. Once I got myself situated better, I enjoyed the cruise around the lake even more.

After an hour or so we returned to our home base, where we built a campfire which fended off the mosquitoes, and enjoyed each other’s company late into the evening.

The next day we had more visits from old friends, and then set out for home. As I’ve expressed here so many times, these trips are a lot of work, especially for Kim. But if we choose them wisely it’s always worth the trouble. We chose wisely this time.

Tuesday, July 8, 2014

You Can Check out Any Time You Like…

“Does Mitch’s left hand not work anymore?” our friend Amy whispered to Kim as we left the restaurant last weekend in Bangor.

“Why? Did he say something to you?” Kim responded.

“No, but I noticed that he didn’t move it at all during dinner.”

“Yeah, he can’t do much with that hand anymore.”

“Are you guys okay?” Amy asked, struggling to comprehend an entire limb simply written off.

“We’re alright. We just make adjustments and move on,” Kim explained.

Kim and I were well aware that I was no longer using my left hand, but we hadn’t thought of it as an issue to be noticed or not noticed by others. The hand is just another thing for us to deal with. It had been three or four months since we’d seen Dean and Amy, however, and this particular development stood out to them. I didn’t see that one coming, but in retrospect maybe I should have.

Bangor is a small city, pretty much in the center of Maine. Less than 40,000 people live there, but it has a world-class outdoor music venue, called Darlings Waterfront Pavilion, which holds 16,000 concertgoers. Darlings is a local auto dealership.

Come Sail Away – The Styx Anthology
Come Sail Away – The Styx Anthology (Photo credit: Wikipedia)
When the summer concert schedule came out earlier this year, I noticed that an event would be held on July 5, Kim and my wedding anniversary. The opening act would be Don Felder, lead guitarist from the Eagles, followed by Foreigner and then STYX – iconic music from our youth.

We purchased tickets and reserved a hotel room at the casino adjacent to the music venue. Dean and Amy were going to the concert too, so we met them for an early dinner, after which the conversation about my left hand ensued.

Kim and I were in a good mood as we looked forward to an evening of nostalgic music with old friends. I achieved almost rock-star status myself by spending as much time as I could in iBot balance mode. When the concertgoers studied me, many couldn’t believe what they were seeing – perhaps blaming it on the ganja, which was burning here and there throughout the venue. This was my first outing in the iBot since service had been discontinued. If it were to break down on this trip, there would be nobody for me to call. But the iBot was its usual, reliable self.

When we arrived at the mammoth outdoor venue, the first order of business was to confirm that I could actually get to my seat. We had “ADA tickets,” so we were optimistic. Indeed, the route to our section was easily navigable. In fact, we were in a prime location. A special wooden deck had been constructed for my crippled brethren and me. It was located in the center of the venue, and was raised slightly so there were no line of sight issues.

The second order of business was to evaluate the bathrooms, which consisted of a long row of porta-potties. I noticed that a couple of the porta-potties had handicapped emblems on the door. We did a trial run in one of them, and determined that it was too small to accommodate my iBot. This was a potentially serious problem.

I approached an usher to voice my dissatisfaction, albeit politely. He indicated that there were two even larger porta-potties at another part of the venue. I was skeptical, but we worked our way toward them. The usher was right. These units were roomy enough for the iBot. This success led directly to the third order of business – buying some ridiculously overpriced draft beers! If not for the bathroom accessibility, it would have been a dry concert for me.

In recent months I had been auditioning new MS symptoms, and this would be opening night for one of them. Of late, either one of my legs would occasionally go into a violent spasm as if I were trying to kick an invisible assailant, about five times per second for a period of five to ten seconds. Until the night of the concert, the only trigger had been when Kim was drying my legs off after a shower. We would watch the explosion of activity with my leg muscles, scratch our heads, and maybe even laugh a little in the privacy of our home.

But while I was in balance mode at the concert, with Amy and Kim in line for beer, I somehow triggered my left foot, and it went into one of those violent spasms. There were people all around. I was embarrassed and felt helpless. I was glad that nobody stared at me or tried to come to my rescue, which might have drawn a crowd. And thankfully, this event was more like five seconds long than ten. All I could do was wait for the spasm to run its course – the super cool dude in the iBot wheelchair brought back to earth. By the time Amy and Kim returned with the beer, everything was back to normal, and I didn’t even mention it to them.

Don Felder played classic Eagles songs, including Hotel California, and it was awe-inspiring. Foreigner and STYX were high-energy and played our favorite tunes from back in the day. I found myself singing along for three hours. I was only comfortable doing so because I knew no one could hear me.

After the concert, we parted ways with Dean and Amy, and Kim and I walked back to our hotel room and went to bed. This was no small task, as transferring me from wheelchair to bed without the benefit of my overhead lift system is cumbersome. But we managed and were soon asleep.

About two hours later, trouble began. I am fairly regular and almost never have the urgent need to use the toilet. For someone who has difficulty transferring, this is a bonus.

Kim describes the events in the middle of the night this way. I mumbled something along the lines of, “I’m too hot.” A moment later I said, “I don’t feel good.” My voice was so faint Kim held out hope that I was only talking in my sleep. A few more minutes passed by, and I was silent. She nodded back off to sleep. Then I said in a clear and strong voice, “I need to get to the toilet, right now!”

Kim sprang into action, but my legs were uncooperative. The discomfort I felt in my gut was apparently causing spasticity in my legs. This was different than the violent kicking spasm earlier, but more persistent. Both appendages were as stiff as bedposts, and stuck in the fully extended position – a symptom I’ve had for years, on and off. The harder Kim tried to bend my knees, the more my legs resisted. Eventually the spasms subsided on their own, and she wrestled me into the chair. I zipped to the accessible bathroom, and we managed to get me onto the throne before shit happened. But it was close.

Kim was a wash of sweat, and I thanked her for the heroic effort. Actually, I think it was more of congratulations than thanks, given what we had narrowly avoided.

After a while we reversed the process, but without the near panic of earlier. The rest of the night went well. After visiting the following morning with my brother Andy and his wife Karen, and then enjoying lunch with our friends Preston and Nancy, we returned home.

Traveling, even for one night, can be so taxing on us. But we’re glad we celebrated our anniversary this year at an awesome concert with great friends. The difficulties will be forgotten, but the pleasant memories will endure.

“You can check out any time you like, but you can never leave,” goes the Eagles classic hit.

Oh yeah I can leave. But not yet. Not by a long shot.

Wednesday, July 2, 2014

Some Improvements to This Website

This is icon for social networking website. Th...

I am very busy these days. It’s as if we are cramming an entire summer’s worth of activities into the first two weeks of July. So I’m putting together a post in about 10 minutes – please forgive me.

I’ve been looking for an opportunity to highlight some improvements at


Google’s Blogger, which is the platform that I used to build this blog, has a feature it calls Pages. These show up as a row of headers just below my ocean-view banner at the very top. For now, I have the following Pages; I may add more later:
Inspiration: I’ve been careful not to describe this website as inspirational. The connotation would be, I fear, that it contains only positive posts and happy endings – a fairytale. I prefer to think of my writing as realistic or helpful, like a good engineering report or business plan. But, despite my best efforts, people do find certain posts inspirational, and I have gathered a few of those on this Page.
Videos: I’ve categorized these as “iBot Videos” and “Other Videos.” Enjoy.
Vintage Pics: From my parents’ wedding through Kim and my wedding. 
Travel: I’ve done a lot of traveling as a disabled person, and I’ve blogged about it frequently.

Share Buttons

On the top of the right side of the page you will see five new buttons, one each for sharing content on Facebook, Twitter, Email, or Google Plus, and one button for printing a hard copy of the blog post. I encourage readers to share my posts liberally. I only ask that you don’t distribute content without attributing it to me (attribution is done automatically if you use these buttons). The easiest way for you to manually attribute content is to say something like, “From the website, Mitch had this to say:…”

My goal is to reach as many people as possible through my writing. I am humbled when someone likes a post enough to pass it along. If you have any questions about sharing content, please don’t hesitate to email me.

A Reminder of Some Existing Features
Search: Immediately under the share buttons is the search feature. I’ve written on many topics, and if you put some keywords in about disability, multiple sclerosis, or a zillion other things, there’s a good chance you’ll find some content on the subject. Or, if you remember that you enjoyed a post about snowmobiling, for example, and you’d like to read it again, type the word “snowmobiling” into the search box.
Click Here to Email Me: Under the search box is a button to press if you would like to email me. I love to hear from readers.
Receive Email Updates of New Posts: If you want to be sure not to miss a post, one way is to receive new posts via your email inbox. Type your address in this section, and you will receive a confirmation email. You’ll need to respond to that confirmation email in order to be added to the database. Hundreds of people stay in touch with in this way.
Please let me know if you’re having any technical problems with the website, or if you have any suggestions for improving this blog.

Finally, please feel free to share my web address,, with anyone you feel may enjoy the site.

Thanks so much for reading and staying in touch. For my American friends – have a wonderful Independence Day on Friday. I plan to.