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.