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).

Bionics

There are many approaches to solving disability problems in human beings. In the case of multiple sclerosis, for example, here are just a few of the strategies currently being employed:

• Many researchers are pursuing pharmacological solutions such as disease modifying treatments focused on the body’s immune response.
• Some researchers are considering drugs that will have neuroprotective qualities, shielding the patient’s central nervous system from attack.
• Others are focusing on developing stem cell treatments that will either rebuild the immune system or repair damage done to the central nervous system of patients with multiple sclerosis.
• Still others are concentrating their efforts on identifying the root cause of the disease, presuming that this knowledge can facilitate a cure.

But this blog post focuses on those who are pursuing the design and manufacture of electromechanical aids for disabled people – bionics. The EKSO exoskeleton  is getting closer to commercial readiness every day. In the world of prosthetic limbs, DEKA Research and Development, who developed my iBot mobility system, recently received FDA approval for their Luke Arm. I was privileged to see the arm and discuss it with the manager of engineering during our visit to the DEKA facility late last year.

I urge you to watch the YouTube video below. It's a TED talk delivered by Hugh Herr, a double amputee and developer of bionic systems at MIT. He is the personification of “physician, heal thyself.”

Herr looks at disability in a novel way.

“Basic levels of physiological function should be a part of our human rights. Every person should have the right to live life without disability if they so choose -- the right to live life without severe depression; the right to see a loved one in the case of seeing impaired; or the right to walk or to dance, in the case of limb paralysis or limb amputation. As a society, we can achieve these human rights if we accept the proposition that humans are not disabled. A person can never be broken. Our built environment, our technologies, are broken and disabled. We the people need not accept our limitations, but can transcend disability through technological innovation. Indeed, through fundamental advances in bionics in this century, we will set the technological foundation for an enhanced human experience, and we will end disability.”

Whether you are a healthy or disabled person you’ll enjoy this entire 19 minute video. But if you just want to hit the emotional highlights, watch the story of a woman who receives new bionic legs at the 12:10 point of the video. Then watch the concluding story of a woman who lost her leg in the Boston Marathon bombing, beginning at 14:50. Bring a box of tissues.

If you are reading this in an email, click here to access the video.

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.

Published Another Column in MS Focus Magazine

In a November, 2013 post I shared how MS Focus magazine had asked me to write a piece for their recurring feature entitled "Men… & MS." I wrote "Focused on Living," where I described how having MS has given me, whether I like it or not, new focus. Apparently it was well received, because they asked me to write again.

This new column is entitled "War and Peace on the MS Front." It makes the case that the best approach is to fight MS on some days but make peace with it on other days. To read the article, click here and work your way to page 60.

Enjoy.

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.

What Do I Do All Day? I Facebook

This is the ninth in a series of posts about how a disabled person like me passes the time at home, now that I no longer work.

I’m aware that Facebook is childish, an invasion of my privacy, a huge waste of time, and the leading candidate to bring about the end of the world as we know it. Nevertheless, I am an enthusiastic Facebook user. Here are a few reasons why.

I can remain connected with organizations I belong to or that I am simply interested in, like these:

American Humanist Association
MA Class of 1982
Knightville Mill Creek (my neighborhood Association in South Portland)
Primary Progressive Multiple Sclerosis
Positive Living with MS
Save the IBot
Boston Red Sox
New England Patriots

I can read the latest updates from my favorite local businesses, such as:

Verbena
CIA
Snow Squall
Portland Lobster Company

Through EnjoyingtheRide.com, I have decided to make myself this transparent, public figure, albeit a minor one. I have become an open book, seemingly to inform people of what life is like for a disabled person, but perhaps because I simply crave attention. I’ll discuss almost any personal topic, as evidenced by my recent post about emptying my bladder. I have come to use Facebook as a tool to promote my platform, my personal brand –Enjoying the Ride. As with my blog, I consider my Facebook page to be public, and I treat it as such. I don’t put anything on my wall that I don’t want the entire world to have access to.

I approve almost all friend requests, other than obvious spammers. What does a friend-request spammer look like? Nobody knows, but their Facebook image depicts a young, sexy woman. Their “About” page is essentially empty. Usually the spammer and I have a solitary friend in common – one of my male acquaintances who was suckered into believing that a beautiful young woman actually wanted to be his friend.

I have almost 500 friends, but here’s the thing. I only subscribe to updates from maybe 100 of them. Here’s a partial list of behaviors that cause me to stop accepting updates from people:

Too many mediocre jokes or memes
Too much information about boring day-to-day activities
Too many posts about political positions that I disagree with
Too many posts about political positions I agree with (although I have slightly more tolerance for this)
Just too many posts, even if high quality
Too many religious posts – spirituality should be a private issue
Too much incorrect information (according to Snopes.com)
Pushing your personal business interests too hard
Being mean to other people
Talking to dead people on Facebook
I simply don’t know you at all and therefore I’m not interested in your personal updates (no offense)

I hope I don't sound too harsh, but if I don't manage this than I am inundated with too much information to process. Of course some of my closest friends and relatives get a pass on more than one of these exclusion criteria. You know who you are.

I also take advantage of the Facebook chat window. This mimics cell phone style texting. However, because I use Dragon NaturallySpeaking on my laptop, I much prefer to chat on Facebook as opposed to texting on a cell phone or tablet.

Finally, Kim likes to use the “check in” feature of Facebook. When we are at a bar or restaurant or some large event, she can indicate as much in her status update. More than once, friends have seen the check-in and have been nearby and joined us. But one time in particular the check-in feature was awesome for us. We were at a Red Sox game at Fenway Park a few years ago, and Kim checked us in. My cousin’s daughter, Cynthia, who we hadn’t seen in many years, was up from Philadelphia with her new husband, who we had never met, to take in a Sox game. She saw our update, and we were able to visit with them during the game. If not for Facebook, we would have been oblivious to one another’s presence at Fenway.

My friend Marc Stecker posted this link recently, explaining how our online presence, including things like Facebook “likes,” is used by marketers in a very sophisticated and almost creepy manner. Frankly, I don’t mind. After all, I’m an open book.

Although Facebook is riddled with shortcomings, there are enough advantages sprinkled in that somebody with as much free time as I have can benefit from participation. For very busy people, Facebook may be one habit that doesn’t make sense. For me, it’s a vital connection to the world outside my cocoon.

Here are my other posts in this series:

1. I Watch (mostly) Quality Television
2. I Digitize and Archive Family Photos and Videos
3. I Read Books
4. I Attend Courses at Top Universities (sort of)
5. I Nap
6. I Blog
7. I Read Other People's Blogs
8. I Obsess over Our Finances

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.