Amazon Smile

Smiley Face

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?”

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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

English: Bodybuilder
(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.

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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.


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The Price of Independence

surehandsceiling 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.

SetWidth180-70730 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.

2010 11 63 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?

2006 704 Phoebe 03 2008 362
2008 374 2008 380
2010 08 10b

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My Old Life

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.

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Hope Springs Eternal

Sure sign of Spring - Robin - Bird
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. 
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I Keep Falling

Front view of a Hoyer lift, used for lifting p...
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
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An Argument from Love

“If you refuse
to do it yourself, I’ll do it for you,” I threatened.
“Oh no you
won’t!” Kim replied.
What had begun
as a legitimate debate soon deteriorated into a test of wills.
Last week Kim
received a letter from our primary care physician indicating that she was due
for her annual physical. I informed Kim of the correspondence, and she was
rather dismissive. “Yeah, whatever. I’ll make an appointment when they refuse to fill my prescriptions.” Yes, our doctor has been known to hold our
prescriptions hostage if we don’t come in for a physical.
Kim’s attitude
toward these annual checkups is not an uncommon one. Like so many people, she has
no pressing health problems (that we know of) and is a very busy person. My
understanding is that annual checkups are not as much fun for women as for men.
I’ve seen the stirrups. Nevertheless, I just couldn’t let it go.
I argued that
physical examinations are even more important as we grow older (perhaps an ill-advised tactic). I brought the letter over to her, and while
channeling my inner male chauvinist (another ill-advised tactic) I demanded,
“Call the doctor’s office right now
and make an appointment.” I sat there, alternately staring down at the letter
and up at her eyes, so as to indicate my resolve.
Unafraid,
undaunted, and unimpressed, Kim pushed the letter back toward me and said, “No.
I’ll do it when I feel like it.”
I slid the note back toward her and made that threat, “If you refuse to
do it yourself, I’ll do it for you.”
“Oh no you
won’t!”
“Try me.”
“It doesn’t
matter, because the doctor’s office will never let you.”
“I guess we’ll
find out, won’t we?”
I did it. I
contacted the doctor’s office and they allowed me to make an appointment
for Kim, no questions asked. I felt like the secretary to an important person.
My important
person became steaming mad. “What you just did is not okay.”
Kim determined that my punishment was
approximately one hour of the silent treatment. The tension in the room was
palpable, but eventually it dissipated. Since that time we have made our
respective cases to several impartial people, but few are foolish enough to
choose a side. We each stand by our original positions.
As I began writing
this account of the confrontation, I had to ask myself why I felt so strongly
that Kim should make an appointment sooner rather than later. As I said, I
didn’t suspect that she had any particular, underlying medical problem. That
wasn’t it. Of course I have immense love and compassion for my wife. That was
obviously a major factor. Given my own medical situation, I’m more aware of the
effect that health problems can have on a person’s life, and the importance of
frequent and open communication with your medical team. I go to these
appointments with a long list of issues, many of which are addressed at least
to some extent during the checkup. These experiences definitely influenced my
desire to have Kim hurry up and schedule her annual physical.
But if Kim
wasn’t both my wife and my caregiver, and I didn’t depend on her so completely
for my personal well-being, would I have been so insistent? In the heat of the
argument I truly felt that I occupied the moral and altruistic high ground. But
was I also motivated by self-preservation, at least a little?
Like so many
arguments, this one was a mosaic of legitimate concerns and questionable
tactics. There were plain statements and hidden agendas, genuine concerns and
shameless posturing. Even though intentions were good, communications were
flawed. In the end, however, this was above all an argument from love, and
that’s the most important thing.
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