My Life is Now

Paula Barvin, who is 56 and newly living with Lou Gehrig's disease, navigates with a walker through her backyard garden in Elkins Park in August.
Paula Barvin, who is 56 and newly living with Lou Gehrig's disease, navigates with a walker through her backyard garden in Elkins Park in August. (RON TARVER / Staff Photographer)
Posted: September 23, 2013

At the MDA/ALS Center of Hope at Drexel University, a parade of therapists peers into my future.

The speech therapist asks what I am reading. When I answer, she says, "Your speech is still fine."

The breathing therapist tests my breathing capacity both sitting and lying down. The occupational therapist peppers me with questions: How am I dressing myself, preparing meals, doing household chores?

A year ago, I couldn't have imagined being part of this scenario. The disease came on slowly. Last summer, I noticed that while playing tennis, it took me longer to retrieve balls. On dog walks, I tired quickly. My feet hurt without reason.

After tripping on a buckled pavement in July 2012 and separating my shoulder, I went into physical therapy for my injury and my faltering gait.

At 56, I had an active, fulfilling life. As a director on the Cheltenham School Board, the mother of a 13-year-old about to have his bar mitzvah, and a participant in many cultural activities, nothing about my symptoms made sense. The therapist promised me I'd be back on the tennis court in weeks.

But when she suggested that I rise up on my toes, I felt my feet were very far away.

And there were other signs. As I canvassed my neighborhood to help reelect President Obama that fall, my legs cramped and ached. Although I struggled to visit every house on my list, I found that I could not.

I began to worry that I had ALS. This wasn't an idle notion: My older brother Bill, a movie, TV, and music video location scout, had died of the disease 12 years earlier, at age 47.

From the time Bill was diagnosed, my family researched everything we could find about the disease. Often referred to as "Lou Gehrig's disease," amyotrophic lateral sclerosis is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease become totally paralyzed.

In 10 percent of cases, there is a genetic mutation that can be familial. My doctor, and the doctors who treated my brother, are now testing our blood to see if we share this mutation.

Frustrated with my lack of progress with therapy, I embarked on a long series of tests with the Center of Hope's director, Terry Heiman-Patterson. Diagnosing ALS is a long and tricky process; it is a diagnosis of exclusion. We started with an EMG, or nerve conductor test. The nerves in my feet were damaged, but what had caused the damage? A possible back injury was suspected, and I had MRIs of every section of my spine. An autoimmune disease was another possibility, so I had a spinal tap. My sister suggested secondary Lyme disease. But everything came up negative.

Given my brother's history, the elephant in the room was always ALS. On an early summer afternoon, a doctor at Pennsylvania Hospital's ALS clinic confirmed the diagnosis.

I was scared, worried, and concerned. Knowing the care my brother Bill required, I worried how this would affect my husband Dan, son David, and our lives.

All of which led me back to Bill: I thought about his travels to Boston, Baltimore and southern Italy while he was sick and his courage up until the end.

I have always been an optimistic person, choosing to see the glass half full. In my 30-year career directing canvassing for environmental groups, I taught volunteers to focus on what was in their control, rather than what was not. That credo was important to me, both in politics and in my personal life. And though it has been made more difficult by this disease, I have tried to carry that spirit into my life now, and to focus on what I can do, rather than what I cannot.

I still cannot ignore the bottom line: the average life span after diagnosis of ALS is 36 months.

Yes, there are hopeful signs, involving stem cell research and modifications to the immune system. On the horizon are possible genetic breakthroughs.

Yet the chances are slim to none that I, along with the other 35,000 people living with ALS, will live long enough to benefit from these future cures.

So what can I do? These days, I can walk with ankle braces called MAFOs and a walker, which I have christened "Rosie." A reconditioned wheelchair purchased for $65 helps me to take longer trips to museums and the beach. The ALS organization recommended that I buy a manual wheelchair to start; insurers refuse to cover an electric wheelchair for five years, if they have already paid for a manual one.

The biggest risk I face at present is falling. My braces support my legs but do not enhance my stability. I have fallen more than 30 times, three seriously. A recent tumble led to 30 stitches in my nose with two black-and-blue eyes.

My life has, of course, changed. I used to love working in our garden and visiting gardens. Ours is flourishing, but so are the weeds. I can point to them, but I cannot pull them. The last time we visited our favorite garden, Chanticleer in Wayne, Dan pushed me in the wheelchair. Only last year I walked its grounds on my own.

Dan and David's responsibilities have grown considerably. I can no longer walk our dog, or do laundry.

The biggest changes are in small daily aspects of life. The simple acts of rising from a chair, getting dressed, and climbing stairs have all become harder. We are looking into installing a chairlift for our stairs, which is not covered by insurance.

As a school board member, I continue my participation, with my colleagues helping to transport me to and from meetings. It's not without challenges. On a day when I took a particularly hard fall, I was scheduled for a one-on-one meeting with our new superintendent, followed by a board meeting. When a well-meaning friend asked if I wanted to reschedule, I shook my head, telling her I'd rather focus on the issues facing the schools than the nasty bump on my forehead.

Because I'm unable to drive, I've also spent more time indoors. Fortunately, I love to read. Books can take me to places I am unlikely to go. I recently read Until I Say Goodbye, by Susan Spencer-Wendel, who was diagnosed with ALS at age 44 with three young children. She decided to live her last year with joy and take a trip with each of the seven people she loves. She traveled extensively, discovered her birth parents in Oregon and Cyprus. Her hands were her first affected area. Since mine are my feet, travel is more daunting.

I know eventually that I will lose my ability to speak and swallow. I remember Bill, wearing a bib while trying to swallow mango juice. I don't know how I will deal with this progression. What will I do when I can no longer use my fingers to type or prepare food for my family, or dress and groom myself?

I don't yet know what it will feel like to be confined to a wheelchair, to be paralyzed. Will I be able to live on a ventilator without a voice and be tube-fed?

The epitaph on Bill's headstone reads "Life was his art." For now I'm going to ignore the fortune-tellers at the ALS clinic. I tell myself that how I live each day matters and that my life is now. And that I am determined to celebrate the life that I can still live.


Paula Barvin can be reached at pbarvin@comcast.net.

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