What I Remember and What I Don’t

I can remember my childhood telephone number: 207-794-8247
But I can’t remember the current cell phone number for either of my children.

I do remember where I was when the planes crashed on 9/11 and when I heard about the Space Shuttle Challenger explosion.
However, I don’t remember President Kennedy being shot seven weeks after I was born.

I remember a lot of things from my college graduation ceremony.
But I don’t remember finding out that I was accepted into college.

I can’t shake the image of Billy Buckner letting a routine ground ball go between his legs in what should have been the final out of the 1986 World Series, or whose house I watched it at in Cleveland, Ohio, or the premature, tear jerking victory speech I made just before it happened.
Yet I don’t have an image in my mind of my daughter taking her first steps.

I do remember every room in all six houses that we’ve ever owned.
I just can’t remember where we keep the broom in this house.

I remember turning fifty. It was a blast.
I don’t remember turning twenty-one. I assume I got very drunk.

I vividly recall the births of both of my children.
But I can’t remember finding out Kim was pregnant, either time.

I have at least partial memories of when my brother became temporarily blind (I was two and a half years old) and when my father told me about my mother’s accident (five years, eleven months old).
But I can’t remember a joke, not a single joke. And I can’t remember the name of that guy, you know, that guy with the thing…

I remember being diagnosed with multiple sclerosis.
But I cannot remember the last time I walked. I haven’t forgotten what it feels like, though, because I still walk in my dreams.

What can you remember? What can’t you?

The Difficulty I have Accepting Compliments

I receive so much positive feedback for my blog posts. I am referred to as inspirational, or courageous, or any number of similar accolades.

Of course this buoys my mood, and it motivates me to keep writing. We humans are programmed to welcome, even crave compliments. So please allow me to say a big THANK YOU to all my readers for your support! It means a great deal to me.

But I feel a little bit guilty. I inherited my resilience from my mother. It was an advantage of birth similar to when people inherit intelligence, athleticism, or good looks. In addition to my genetic advantages, I am fortunate in so many other ways. Here are just a few:

I’m a white male in America (three advantages in one)

I have an incredibly supportive wife, family, and friends (apparently advantages come in threes)

I have a certain amount of financial security (at least until the next market crash)

I don’t suffer from depression (am I crazy not to?)

I suppose I have been a good steward of these gifts, and that’s something. I’ve made the effort to share my experiences. I could have kept this all to myself, but I didn’t. I hereby accept any and all praise for being forthright.

But there are so many people who wake up every day and battle against incredible odds, and they don’t get the recognition that I get. I don’t believe I’m any more worthy of this praise than people who are having a rougher time than me, people who don’t enjoy the advantages I do, or people who can’t describe their lives in a positive and inspirational way because they are miserable.

I’d like to giftwrap the complement “you are such an inspiration” that I received in an email last week and deliver it to the person with MS who gives her best every day even though her husband just left her because he “can’t take it anymore.” I’d like to regift the “you’re a remarkable person” comment that I received at my blog and send it off to the cancer patient who is trying to make the critical decision about whether or not to continue treatment.

Since these exchanges are not possible, here’s the deal I propose. I’ll continue to welcome your compliments with appreciation and humility, and I’ll maintain my positive message. In return, we must all recognize those disadvantaged people who are not able to live a contented life – those people who are scratching and clawing just to survive. To me, those are the real, silent heroes.

Now, here is the question of the day for all of you armchair psychiatrists. Did I write this post for purely altruistic reasons, or am I subconsciously craving even more positive feedback along the lines of “No, Mitch, you really do deserve to be admired. Don’t sell yourself short.”

I wish I knew the answer.

I Have Difficulty Eating – But I’m Not Going to Starve

In the last year I’ve experienced increased difficulty getting food from my plate to my mouth. In an ironic twist, my skills at getting food on my shirt, on my pants, or on the floor have greatly improved.

We’ve been implementing new eating strategies for a while. I have plates with high sides so that I can push my food up against the edge in order to get it on my utensil. Below are two examples.

I eat one-handed. My left hand is not involved in this process at all, as it doesn’t have any value to add. So, because I push food up against the side of the plate, I need something to keep my meal from sliding across the table. We’ve purchased several sticky items that, when placed between the plate and the table, help keep things stationary. See the two examples below.

We have also modified my utensils. I have no need for a knife. I don’t have the strength or dexterity to cut food. I’m increasingly ignoring my fork, as spearing food has become more difficult over time, even lettuce in a salad. I mostly use a soup spoon for everything because Kim has already cut my food for me. In order to help with my grip on utensils, we’ve added foam to each of the handles. But even then, I had difficulty manipulating the utensils properly, so I asked my friend Michael to bend my spoons and forks in a couple different directions. Now, they work much better. See below.

It’s difficult for me to lift bottles, cups, or glasses to my mouth, so I tend to use straws these days. We found some reusable straws that we can bend into the exact configuration that we want. But I must admit that neither wine nor beer taste as good through a straw. See photo below.

As I stated in the first paragraph, I tend to spill a lot of food on my chest, belly, and lap. So we finally broke down and bought two adult bibs. They have saved a lot of damage to my clothes. I use them at home, but I haven’t got the nerve up to use them at a restaurant yet. See below.

But even with all these accommodations, I know that in the not-too-distant future I will no longer be able to feed myself at all. Already, Kim feeds me once in a while, depending on the food and on my level of hand and arm fatigue.

From a practical standpoint, there are worse things that can happen to me (and probably will). I’m not going to starve. People will always be around to feed me. But from a psychological standpoint, for both Kim and me, this is a tough one. The problem won’t be private dining, but rather group dining. I hate feeling pitied, and I know there will be a heavy dose of that sentiment aimed at me when I’m no longer able to feed myself.

But it doesn’t have to be that way. We have no plans to stop inviting people over or to curtail our dining out. I intend to sit back and enjoy my meals with guests, just like I always have. I’ll make conversation. I’ll smile and laugh. I’ll bore my companions with long stories and off-the-wall opinions. In the end, this is just another adjustment in a long line of adjustments that Kim and I will have to make.

It’s not the end of the world – not even close.

Our Love Affair with Cobblestone Streets and Brick Sidewalks

People are moving back to the cities. After decades of migrating away from one another, and building on huge, wooded house lots that isolated us from our neighbors, people are living in close proximity again. It’s a wonderful thing to see. Cities like Portland and South Portland, Maine are experiencing revitalizations.

As part of this rebirth, instead of scorning the old, industrial and warehouse districts, developers are reinventing them as condominiums, restaurants, and office space. And how about the sidewalks and the streets? What are we doing there?

City governments love to preserve cobblestone streets, for sentimental reasons. They remind us of the history of our great cities – the establishment of commerce, government, and prosperity in a region. We also love the old brick sidewalks. It’s feels significant to tread on the very same bricks that our forbearers forged and laid so long ago. Also, cobblestone streets and brick sidewalks fit well with the aesthetics of old brick buildings. They complement one another.

Ah, nostalgia. What could be wrong with it? Well, there’s a lot wrong with it if you are a disabled person.

The old brick sidewalks that are so faithfully preserved are usually uneven and sporadically damaged. The curb cuts and the transitions are typically steep and rough. Old brick sidewalks are difficult for people to navigate using wheelchairs, scooters, walkers, canes, and crutches. They impose a danger to the elderly and others who have difficulty walking.

Cobblestone streets, in and of themselves, are not so much of a problem, as long as they have an accessible sidewalk and flat street crossings. But that is rarely the case.

Our urban planners have a decision to make. Is it more important to preserve the past and have a consistent aesthetic in these revitalized downtown areas, or is it more important to make our cities accessible to everyone. Too often our city leaders are choosing to ignore the needs of their disabled citizens, and serve other interests instead. As a disabled person, and as an advocate for other disabled people, I find this troubling.

Disclaimer time – I manage to deal with the brick sidewalks and cobblestone streets. I am borderline fearless with my wheelchairs. I enjoy the downtown districts in my area despite the inconveniences. But I worry about other disabled people who choose to stay home rather than deal with our 19^th century streets and sidewalks.

What do I want? I want our cities to replace old brick sidewalks with modern brick or concrete sidewalks, with ADA curb cuts. I want our cities to either replace cobblestone streets with paved streets, or ensure that there are smooth sidewalks and walkways for street crossings.

How are Portland and South Portland doing? I’m happy to report that in my South Portland neighborhood the city completed a major revitalization a couple of years ago resulting in new street tops that replaced aging pavement; new, wider concrete sidewalks that replaced crumbling brick sidewalks; lovely streetlamps that replaced outdated and mostly nonfunctioning streetlights; and updated utilities underneath the streets. I couldn’t be more pleased with these improvements, especially the sidewalks.

In South Portland there is still one cobblestone pathway that pedestrians must walk down, for approximately 100 yards, to utilize Thomas Knight Park or to walk across the Casco Bay Bridge to Portland. I’ve been working with the city for over a year on options, and it appears that they are ready to move forward with a paved pathway through Thomas Knight Park. It should be installed before winter.

Here is a very short video I posted in May 2013 at an MS website called My Counterpane, which should give you an idea of why cobblestone streets don't work with wheelchairs (if you are receiving this as an email blog post, you'll have to go to the blog website to see the video).

But in neighboring Portland, the situation is terrible. Old, brick sidewalks are in disrepair throughout the commercial district. Curb cuts and other transitions are downright dangerous. Cobblestone streets are sprinkled throughout the Old Port, and many times disabled people have no choice but to hobble over them if they wish to get from one part of the district to another.

When cities give such high standing to old brick sidewalks and cobblestone streets, they are choosing the past over the present. They are choosing nostalgia over accessibility. They are choosing form over function. Worst of all, they are choosing things over people.

How are your cities handling old brick sidewalks and cobblestone streets?

A Firm Handshake

To say that I am a fan of the firm handshake doesn’t begin to do it justice. I don’t only enjoy or prefer a firm handshake. To me, it is essential. A wimpy handshake leaves me wholly unsatisfied with the interaction. Why bother to shake my hand if you can’t put a little effort into it? If you don’t care about delivering a firm handshake, then what else don’t you care about? Truth? Justice? The American way?

It doesn’t have to be overpowering – in fact that’s an entirely different problem. But it can’t be mushy or weak. And I don’t forgive a limp handshake from a woman any more than I do from a man.

Recently, my high regard for the firm handshake has become a problem, because I can no longer deliver one. I can’t uncurl my fingers far enough – I can’t make my hand sufficiently flat – to couple with your hand in the proper way. I often give you only a few of my fingers and no hand at all. If I do manage to seat my hand into yours, which I still accomplish once in a while, then you will find my grip to be underwhelming – generally mushy and soft.

I know you don’t blame me. Obviously, when someone is sitting in a wheelchair they are forgiven if they’re unable to perform certain tasks. What bothers me is that I enjoy the brief connection a handshake provides, and I miss that. It demonstrates friendliness and good manners. It clearly marks the opening or closing of an interaction. So many times, especially in my professional career, a degree of animosity and distrust developed over time with relationships that consisted of phone calls and emails only. But once we were together, once we shook hands, the distrust often dissolved and positive relations ensued.

Of course, the other reason that my recent inability to perform a proper handshake bothers me is because it marks continued disease progression. My right hand is my last decent appendage, and it is continuing to weaken.

So, if I cannot complete a handshake, what can I do instead? I am able to perform a fist bump. But they are a bit juvenile and informal, so they don’t suit every social situation. Additionally, I expect that fist bumps are merely a fad and will lose popularity like the high five, for example.

Hugs work too, but they are too intimate for every relationship or every situation. If you do come in for the hug, please approach from my left side. If you approach from the right side you may hit my joystick and send me flying. Yes, that has happened.

And of course, if you don’t mind a mushy, three finger handshake, then I’m still good for that too. The bottom line is that if we’re in a group and there are greetings going around, don’t avoid me because you’re not sure exactly how to proceed. Come on over and we’ll figure out something together.

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?

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.

My Do’s and Don’ts

I don't walk in the woods anymore, but I do sit by the ocean.
I don't sleep well at night, but I do take naps during the day.
I don't travel much, but people visit me often.
I don't work, but I remain relevant.
I don't walk, run, swim, or bike, but I still breathe, swallow, see, and speak.
I don't drive, but I am driven.

-----------

I am dependent but not helpless.
I am disabled, but I'm not hungry, wet, cold, or abused.
I have many friends, but there is much I can't do with them.
I am left behind, but I enjoy my time alone.
I am fragile but not weak.
I am embarrassed but not ashamed.

-----------

I am a born optimist, but I don’t like my chances.
I am a prisoner in this body, but I possess free will.
I am embattled, but I remain content.
I am frightened, but I am loved.
I am frustrated and discouraged, but more often I am amused and intrigued.
I worry about the future, but I live in the present.

My New Sure Hands Overhead Lift System

My April 29 post said:

“The Sure Hands lift system has the unique characteristic of allowing a disabled person to control the entire process. If I had one of these, I could transfer from bed to Invacare wheelchair to shower chair to iBot wheelchair to toilet, or any combination thereof –all by myself. How cool would that be?”

Well, it’s installed, and I’ve been using it for a few weeks, and it is very cool indeed.

As you can see from the photos, there are two “hands” that grab me around my chest just under my armpits, and there are two hooks that go around my thighs. I have a remote control hanging around my neck with buttons for up, down, travel right, and travel left. I wouldn’t characterize the lift as “comfortable.” It’s more like “acceptable.” I wouldn’t want to be suspended in this way for more than a minute or two, and luckily I don’t have to be.

I’m able to transfer from my wheelchair to my bed or to the toilet. If we put a second wheelchair or a shower chair anywhere under the overhead rail system, I can transfer to that as well.

Kim likes to sleep later than me on weekends. For the past couple of years I’ve been unable to get out of bed without her assistance. I can now. Granted, the activity wakes her up, but she has been able to fall back asleep once I finish my transfer.

Until the system was in place, we were doing some rather unorthodox transfers, which carried a certain amount of risk for Kim as well as me. Those days are behind us, at least at home.

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.

Independence – it’s a wonderful thing.

Driverless Cars – Yes Please

I enjoy the thought exercise where I imagine how people 100 years in the future will regard our generation. I hope that they will be horrified by what MS patients had to endure, because the disease will have been eradicated for many years by then. I also hope they will be appalled by our mindless partisan bickering, because 100 years in the future government will be characterized by reasoned debate and rational discourse. And finally, I’m sure that our descendents will be amazed that human beings used to drive automobiles on public roads, because all personal vehicles will be self-driving by then.

What are the potential benefits of driverless cars? There are so many. Here are just a few:

1. Once the technology is in place, human fatalities from automobile accidents will become rare – maybe on par with the number of deaths from drowning. Today, automobile accidents are the number one cause of death for young people. Almost all of these fatalities are due to human error, not machine error. Self-driving cars will monitor each other and road conditions much more accurately than humans do, and they will make quicker and better driving decisions. Once in a while mechanical/computer failure or unexpected road conditions may still result in accidents, but they will be uncommon.

2. When all vehicles are communicating with nearby vehicles and with a traffic monitoring/control system, traffic jams will become much less common. Overloaded roadways will still exist, but with traffic control systems routing individual automobiles in the optimum direction, the situation will be greatly improved. Commutes will be shortened, and workers will be productive or will be free to relax during their commutes.

3. Fuel efficiency will increase as automobiles operate closer to optimum speeds, with much less stop and go driving, while avoiding excess idle times due to fewer traffic jams. Also, with increased operating efficiency will come decreased pollution loading.

4. Personal automobile ownership will drop significantly as a fleet of self-driving cars will be available on short notice, at least in urban areas. This will lower everyone’s cost of transportation.

5. And my personal favorite – people can be transported independently in an automobile even if they are not capable of driving. This will help disabled people, minors, injured people, and even intoxicated people (who are responsible for 1/3 of auto accidents).

The technology is evolving quickly. Google has a fleet of self-driving cars, and has recently developed a prototype of the next generation autonomous car that doesn’t have a steering wheel or gas and brake pedals. The biggest challenges, however, may not be technological, but logistical and legal. How will traffic laws need to change to accommodate a slow evolution from human driven to self-driven automobiles? How will we handle liability in accidents, especially if there are injuries? Who do you sue if the accident is due to an onboard computer failure – the owner, the passenger, the auto manufacturer, the software developer? Also, how can we prevent hacking and protect privacy on the roads?

I can sort of imagine what the roads will look when all cars are self-driven. But I have trouble imagining what the roads will look like for the twenty or so years when there is a transition from 100% human-driven to 100% self-driven cars. People who invest in the self-driven cars will be angry with human drivers who make mistakes that cause traffic jams or accidents. Human drivers will be annoyed by self-driven cars that go too slow or come to silly full stops at abandoned intersections at 2 AM. As laws and economics slowly push human-driven cars off the road, there will be backlash from traditionalists.

“We love our cars, so why should we have to give up the joy of driving? This is America after all.”

Some answers are in my list of advantages – especially the one that states:

“Automobile accidents are the number one cause of death for young people. Almost all of these fatalities are due to human error, not machine error.”

Is this not reason enough?

I think there will always be a place for enthusiasts to drive their own cars, but eventually it will be relegated to specially designated sections of road. I envision that human driving will become a purely recreational activity.

I can’t wait for the day when I can travel independently again in my self-driving wheelchair van. Okay, I may not live that long, but today’s young, disabled people almost certainly will.

Here are two links of interest:

http://www.bbc.com/future/story/20130405-radical-roads-drive-robot-cars

http://www.usatoday.com/story/money/cars/2014/01/02/self-driving-study/4292893/

And two TED talks below (or click here and here):

Amazon Smile

Aren't you sick of people asking, cajoling, even beseeching you (it’s better than besmirching you) to donate to their charity? I’m not going to do that today. Amazon.com, the online bookseller turned video streaming company turned PROVIDER OF ALL THINGS, is willing to donate for you.

The program is called Amazon Smile. You tell Amazon where you want your money to go, and they will donate 0.5% of all your qualifying purchases to that charity. Allow me to clarify. They are not charging you an extra 0.5% and then donating it. They’re taking 0.5% off their profits from your purchase and giving it to the charity you designate. Why in the world would you not take that deal?

Mitch, how do I take that deal?

I’m glad you asked.

1. Turn on your computer, tablet, or cell phone. If you can’t find the ON button, ask a small child.

2. Go to your internet browser and type in the following website name: smile.amazon.com

3. Enter your email address and Amazon password. If you can’t remember those items then ask the NSA. They have it on file, for your convenience.

4. Select a charity. I might suggest organizations that have the words “multiple sclerosis” in their name.

5. Instead of shopping from Amazon.com in the future, shop from smile.Amazon.com, and donations will be made automatically to your designated charity.

0.5% of your annual purchases may not seem like a significant amount of money, but 0.5% of Amazon.com’s sales for a year is a hugely significant amount of money. Whether or not you are a fan of Amazon.com, they are trying to do a good thing here. Let's hold them to it.

Tell them Mitch sent you, and you’ll qualify for a free lifetime subscription to my new blog entitled “How the Fuck Did I End Up On This Ride Anyway?”

Two Important MS Videos

My friend Kate Milliken is a talented and tireless advocate for people with MS. Here is her message:

My name is Kate Milliken and I have spent the past year building an online platform called MyCounterpane.com which allows people to tell their stories via their emotional ups and downs. Because I live with MS, this has been my first market, and I have decided that all of us need to be celebrated to give people who don't know about MS a look into who we are, what we know, and how we feel. I made a video about some of our original MCP members to send to the Ellen Degeneres show. Their stories are individual, yet the attention on them represents all of us, and that’s why I am hell bent to Get MS on Ellen (#MSonEllen). 

I am an active participant at MyCounterpane.com. I recommend all people with MS consider contributing there. But Kate's message today is about her video to Ellen Degeneres, below (or click here).

The second video I want to share with you was produced by a UK based MS group called Shift.ms. The short piece is called "Circle of Truth," and humorously depicts a young woman deciding whether or not to disclose her MS at work. See below (or click here).

Still a Gym Rat

(Wikipedia)

Before I was diagnosed with MS, and for the first few years afterward, I was dedicated to my exercise programs. My ideal workout time was early morning, because all I had to do was wake up, get my feet on the floor, and lean forward. The next thing I knew I was at the gym.

After my MS diagnosis, I continued to visit the gym on a regular basis. Eventually, when my legs became too weak, I had to give up on the aerobic exercise and the lower body weight lifting. But I still maintained my upper body workouts – even when I started using a cane, two forearm crutches, and then a scooter. Finally, it became too much, and I stopped going to the gym in 2006.

Fast-forward to 2013. My neurologist told me about a facility in South Portland called the Medically Oriented Gym, or MOG. Saco Bay Physical Therapy works one-on-one with patients like me at the MOG. In September, I had my first appointment with Gabe, a physical therapist. We talked about goals. I wanted to maintain or improve the range of motion and strength in my upper extremities. Also, I would welcome anything they could do for leg strength and flexibility, but I knew that would be a more difficult task.

Gabe measured my strength and range of motion to establish a baseline. He then worked with his associate, Jodi, to develop a program for me. Over the past nine months Jodi has incorporated a variety of stretching routines and exercises to strengthen specific muscles and maintain or improve my flexibility. Gabe has evaluated my progress on a regular basis. I have at least maintained and even improved in some of his measures. It’s a beautiful thing.

Gabe, Jodi, and the rest of the team are consummate professionals. Not only do they understand the mobility issues I’m facing, but they exhibit sincere empathy. They know when to push me hard and when to back off. They constantly come up with creative new ways to challenge my muscles to do anything and everything they are still able to do. 

I generally have two one-hour sessions per week, and I plan to keep this up indefinitely. In my case, insurance is picking up 100% of the costs.

The benefits I experience from my workouts at the MOG are more than physical. There is an emotional component as well. I always feel more positive about my life when I am fighting back against this creeping paralysis. And even in the days before I became disabled, I experienced a boost from my gym workouts if for no other reason than I was getting out of the house and moving around. That still applies.

This physical therapy program isn’t going to overcome the relentless attack that MS is waging on my central nervous system. My overall physical well-being is continuing to deteriorate, and I don’t expect it to stop. But the work I am doing at the MOG allows me to maintain as much strength and flexibility as I possibly can, for as long as I possibly can. I encourage everyone with MS or other similar conditions to “use it or lose it.” If you live in the greater Portland area, I recommend Saco Bay Physical Therapy and the MOG. If you live elsewhere, find a physical therapist and a gym that you can work with.

If you're a healthy person, and you're not getting regular exercise, are you just trying to piss me off? You enjoy such good fortune, yet you do nothing to nurture and protect it. Don't make me come over there and kick you in the ass, because I will.

One of the exercises Jodi has me do is to lie on my back (which is no small feat) and execute bench presses. Before MS, I could do three sets of ten with a substantial weight on the bar. I would grunt and strain and put everything I had into each repetition. When working with free weights, I always had a spotter, because if the weight were to land on my chest or neck it could have been dangerous. But today I am bench pressing a broomstick, and I still grunt and strain and put everything I have into each repetition. Last week I said to Jodi, “You better stay here and spot me, because if I get pinned by this broomstick I’m not sure I’ll be able to breathe.”

We laughed and laughed. I’m a funny guy.

The Card Holder

As the second Sunday of May approaches each year, I naturally grow sentimental about my late mother. But there are other triggers that make me pause and reminisce about her too.

In 1969 when Mom became a quadriplegic, clever friends and relatives devised several homemade aids for her. There was a cup holder for her wheelchair, poles with hooks or other attachments on the end to help her reach things, and a wooden card holder. She loved to play cards.

The image to the right is the earliest picture I have of Mom using her card holder (click on any picture to enlarge it). She was a Bridge player, and a pretty good one. Later, she used the card holder for games like UNO with her grandchildren. Mom used the holder so often over the years that it became worn and smooth, but it held up well.

A couple of months before Mom died in 2008, and seven years after my diagnosis, I first noticed my MS symptoms spreading from my lower to my upper extremities. I was shuffling a deck of cards during a poker game with Kim and her parents, when my hands started to feel fuzzy.

In the days after my mother’s passing, we solemnly went through her belongings. Kim came across her card holder and held it up for me in a questioning manner. I said, “Sure, let’s take that. You never know…”

As I looked it over I noticed the name “Vernice Sturgeon” etched onto the front of the cardholder, just in case anyone wondered who it belonged to. This was my childhood handwriting. I remembered personalizing the card holder for Mom when she first got it.

We took the card holder home, and it sat in the attic for a few years. During that time my hand function slowly deteriorated, but I could still hold on to cards. Then, about two years ago I began having more difficulties. I asked Kim to dig out Mom’s card holder. I assumed that something as ancient and simple as this well-worn device wouldn’t be sufficient for my needs. I was wrong.
 
We tried a couple of store-bought models, but they were inferior to Mom’s. Today, I use hers exclusively.

If I was a religious man, I might say that when I’m playing cards Mom is looking down on me with a big smile on her face. There are two problems with that. First, I’m not a religious man. Second, even if I was, she obviously isn’t watching over my card playing because I don’t win any more often than I did before I started using her card holder.

As the years go by, and my physical condition becomes almost indistinguishable from my mother’s, I wish more and more that she was still here to show me the way. That’s no longer possible, but I will hold dear my photos and my fond memories of Mom. I’ll also treasure the lessons I learned from her about living a contented life as a disabled person. These lessons were imparted to me by example, not by talking.

And I will also cherish this little homemade card holder that brought her such joy for thirty-eight years.

Happy Mother’s Day to all the Moms out there.


Below is our Mother’s Day picture from 1972, two and a half years after her accident. Left to right: Andy and Tarr, Ted, Vernice, Mitch, Tom. Notice her homemade cup holder under my right hand.

The Price of Independence

It’s been a long time since I’ve been able to get into and out of bed by myself.

In my March 18 blog post I wrote that I was trying to get my hands on a device that would dramatically improve the ease and safety of my home transfers, and possibly allow me to transfer independently. Good news – shit’s happening.

My amazing occupational therapist, Maren from Coastal Rehab in Cape Elizabeth, is working with me on this project. After we investigated the various overhead lift systems available in the marketplace, in the same way that six years ago I investigated the various wheelchairs available in the marketplace (and found the iBot), one particular technology stood out above the rest. The Sure Hands lift system has the unique characteristic of allowing a disabled person to control the entire process. If I had one of these, I could transfer from bed to Invacare wheelchair to shower chair to iBot wheelchair to toilet, or any combination thereof –all by myself. How cool would that be?

Below is a YouTube video showing how the system works. If you’re reading this post through an email, then click here to watch the video.

I learned that my good friend Darcy, who has MS and lives in a condo just down the street from me, already owns a Sure Hands lift system. I gave it a trial run. The first thing I noticed was how tightly the Sure Hands grabbed me around my upper torso, just under my arm pits. It was uncomfortable. But I decided that the vice-like grip of the Sure Hands would be something I could live with in order to take advantage of its significant benefits.

The Sure Hands system is distributed in Maine by All-Ways Accessible, out of Concord, New Hampshire. I contacted them and asked for a quote. A few days later Heather showed up at my door. She reviewed the system operation with me and looked over the job site, which included my bedroom and adjoining bathroom. She also spent time in the attic, assessing how the system would be supported in my ceiling. I asked her if we could adjust the lift mechanism so it didn’t squeeze my torso so tightly. She responded, “No. You don’t want it to drop you.”

Good point.

A few days later I received a quote for $12,000, plus or minus. Heather asked how I would pay for the system, and I indicated that I was looking into insurance coverage. She informed me that very few of her clients were successful in obtaining reimbursement from insurance companies, but she wished me luck.

To me, this should be a no-brainer for the insurance company, even if the decision is based solely on dollars and cents, with no consideration given to morals, ethics, or compassion. Installing one of these overhead lift systems would be a lot less expensive than any of a number of injuries my wife or I might suffer by executing all these transfers manually. But I don’t really understand how insurance companies make their decisions, so I didn’t find this logic particularly comforting.

I called Anthem and reviewed the situation with them. They indicated to me that if medical necessity could be established (piece of cake), this would be a covered expense. I was encouraged, but still skeptical.

Maren and my primary care physician’s office put together a package requesting preapproval from Anthem. After weeks of back and forth – questions asked, answered, and then asked again – I received a letter from Anthem. It read very much like a rejection, but was it? They disallowed my request on the grounds that I could obtain a similar system in-network, from a local vendor in Maine. Well, that simply isn’t true. But even then, I found a single paragraph on page 2 of the letter which said that I could choose to use the out-of-network benefits program to obtain the system from All-Ways Accessible.

I contacted Anthem to ask what the difference in cost would be for me between the out-of-network and the in-network programs. They explained that it is a maximum out-of-pocket expense of $2500 versus $800. Paying only $2500 for a $12,000 system doesn’t sound like a rejection to me. I went over the issue several times with the Anthem representative to make sure I understood it. I think I do.

Here is how I expect things to proceed. All-Ways Accessible will be here on May 15 to install the overhead lift system. I will pay for it using my credit card. I’ll file a claim with Anthem for $12,000, and they will reimburse me $9500. If things actually proceed in the manner I expect, I will be thrilled. Yet, part of me still worries….

My next post on this subject should be a series of photos of my new system, with gushing praise for how much it has improved my life, and all for a manageable amount of money.

We shall see.

Dogs

If you're going to have a dog, and you sit at home all day like me, it's best to have the ideal dog. Phoebe is not the ideal dog. In fact, she's crazy and a pain in the butt. But I love her to death.

Phoebe is a West Highland White Terrier, commonly referred to as a Westie. We went through several breeds of dog before her. Every one of them had serious flaws. This time around we did our research.  We went with a Westie because they are intelligent, non-shedding, friendly, spunky, compact, loyal, and absolutely adorable. What we didn’t take into account was that they are also stubborn, whiny, barky, and occasionally aloof.

Phoebe is our first Terrier and has several characteristics that I’ve never seen in a dog. Perhaps her most interesting quirk, and great entertainment for our guests, is her TV-watching. She stares at the television waiting for any animal to dare show itself in her house. She reacts most intensely to dogs, but also recognizes any four-legged mammal, certain primates, an occasional bird, and most reptiles. She’s even reacted to cartoon animals. Phoebe is so clever that she can be two rooms away when she recognizes the music associated with one of her favorite dog food commercials, and she comes running at full speed. She is so stupid that she thinks this two-dimensional image is a real dog. When she identifies an animal on TV she goes nuts – barking and jumping toward the screen. Luckily, she is too short to do any damage. It was funny the first 100 times. Now it’s mostly annoying.

The other unique trait she has is the ability, and willingness, to tilt her head to extreme angles to try to understand what a human is saying to her. This never gets old. I think she has a listening vocabulary of 20 or so words, and she is trying to position her powerful ears relative to our voices in search of one of these 20 or so words. Her favorites are: treat, ride, dog, walk, or any sentence beginning with “do you want to…” Her most dreaded word is “bath.”

Regarding affection, she is hot and cold. When we return to the house after having been away, she turns herself inside out with sheer joy and love. She more than forgives us for having left her behind. This behavior persists for about five minutes, and then she is off to something else. In contrast, if it’s the middle of the day and I am bored and I ask her come over and jump in my lap, she stares at me like a cat would. She does not cuddle on command.

I love my dog, and I hope she has a long life. But when she’s gone I don’t think we’ll replace her with another Westie. We’ll keep trying to find that perfect breed. Maybe I’ll even look into a service dog.

Have you found the perfect breed, the perfect dog?

My Old Life

Life (Photo credit: Light Knight)

Do I miss my old life, the one before MS?
You bet I do.

When do I miss it?
Every time I think about it.

How often do I think about it?
Not very often.

My life was quite satisfactory before MS reared its ugly head. Yet, I spend so little time lamenting my losses. I’m too busy living in the moment, my new moment, my new life. So much of what I thought defined me as a person no longer exists. Thankfully, my new interests and passions are proving to be satisfactory in their own right.

I’ll contrast this with my father’s situation. As he aged and lost the ability to enjoy his lifelong pursuits, his world kept shrinking until he sat in front of the TV and watched ESPN most of the day. He wasn’t open-minded and willing to explore alternatives, and he suffered for that in his later years.

I’m not claiming that my quality of life is as good as it used to be. But I’ve learned not to dwell on this. I live in harmony with my healthy past. My memories bring me more joy than resentment. From time to time I look at old photos or share stories with friends and family. I even write blog posts which draw heavily from these memories. But when I am done reminiscing, I occupy myself with one of my new pursuits, to stave off self-pity or wallowing. It works most of the time.

My message, therefore, is this. Yes, cultivate and pursue your interests with enthusiasm. Don’t hold back. But be wary of defining yourself by these same passions, because things can change in a heartbeat. Remember, the name of the game is to live a fulfilling life. Just because you may have found one formula for accomplishing this, keep in mind that there are other means to the same end.

Hope Springs Eternal

Robin (Photo credit: blmiers2)

I run the kind of blog where readers can trust that they’ll never be subjected to a post about the weather. Nobody gives a shit about other people’s weather (except my mother-in-law). 

So please forgive me, because I am going to mention the weather, but only to inform you of my feelings. Everyone says they want to know more about my feelings (except my ten and a half male readers). 

All of us here in the Northeast have suffered through an epic winter – lots of snow and bitterly cold temperatures. For wheelchair users, winters like this one are long, confining, and borderline depressing. I don’t do well outside in the extreme cold. I can sometimes manage the snowy sidewalks, but only on a warmer day. 

Please note that the obvious solution is not an option for us. I have 100 good reasons that I can’t move from here to a warmer climate, but I won’t bore you with them. 

Almost every time I venture out in the winter it begins with me being loaded into the wheelchair van, and somebody else driving me around. No independence there. I appreciate my drivers, especially Kim, and I know my circumstances are preferable to being home-bound, but it does become tedious after a while. 

Twice in the past couple of weeks, on unusually warm days, I’ve been out in the neighborhood by myself, and it has been liberating. It boosts my spirits when I experience something as ordinary as a warm breeze on my face. It’s nothing short of therapeutic when I can go to the grocery store and purchase an item by myself and bring it home. Everyone loves the coming of spring, but wheelchair users – all the more. 

I look forward to a full season with our new stone patio in the backyard – reading in the sunshine during the day and sitting by the fire in the evenings. I daydream about taking the greenbelt path to Bug Light Park, where I can watch the ships come in and out of port. I so want to grab lunch at Verbena or an ice cream at CIA whenever I like, although I will need to monitor my waistline more closely. I could go on. 

As I sit here on the first day of April, temperatures still struggling to reach the upper 40s, I am like a kid on an extended Christmas Eve. I know the gifts are coming soon, and I just can't wait to unwrap them. 

I Keep Falling

Hoyer lift, used for lifting patients into/out of bed. (Photo credit: Wikipedia)

“Sometimes I wish for falling
Wish for the release
Wish for falling through the air
To give me some relief
Because falling's not the problem
When I'm falling I'm in peace
It's only when I hit the ground
It causes all the grief”

― Florence Welch

The type of wheelchair transfers I do are called “stand – pivot.” The reason that I can stand at all is because of the spasticity in my legs and Kim’s firm grip on the back of my pants, not because of actual standing ability. During this type of transfer there is a critical maneuver where I rotate 180° and land at my destination. It works pretty well, almost all the time.

But last Friday morning my legs lost their spasticity halfway through the pivot, and I started crumpling to the floor in slow motion. My legs were stuck in an awkward and painful position under my full body weight. “Pull me forward. Pull me forward!” I implored Kim. She was able to do that and I had a semi-smooth landing, face down on the carpeted floor.

Kim rolled me over and placed pillows under my head and under my knees. I was comfortable. We did the usual roll call of body parts and found that, once again, I had fallen without significant injury. She then went out into the garage to gather up the various pieces of our portable Hoyer lift. This would be the second time we had used this lift in the last year to raise me off the floor.

Did I mention that my daughter and her longtime boyfriend have moved into our house? There’s probably enough interesting material on this subject for a future blog post. Anyway, Nick heard Kim making noise while gathering up the Hoyer lift components, so he emerged from their luxury accommodations at the back of the house (which I fear are so cushy that they will never leave) so that he could help get me off the floor. The Hoyer lift is barely adequate for transferring a disabled person from a wheelchair to a bed, or vice versa. But this lift is not set up well for picking a large person off the floor. Therefore, Nick had to support my head and back while Kim operated the lift. Before long I was back in my wheelchair, only slightly battered and bruised from the ordeal.

Each of my transfers is now a near fall, except for the ones that are actual falls. I know that you are tired of reading about this sort of thing, and I am tired of writing about it, not to mention living through it. I realize that there are several choices for safer transfers. Instead of the stand – pivot, we can do the squat – pivot. Kim has been trained on this procedure. We can also use a slide board. I ordered one and it arrived last week. But these are merely incremental improvements. I’m inclined to make a dramatic improvement. What if there was a system that provided much safer transfers and actually allowed me to accomplish these transfers independently? How cool would that be? Well, there is such a system, and I’m trying to get my hands on one.

Stay tuned to this channel for further updates….

Here’s one parting quote on the subject of falling, by a man who ought to know.

“The greatest glory in living lies not in never falling, but in rising every time we fall.”  ― Nelson Mandela