When I sign up for a run or ride benefiting a cause, I usually have some idea what the cause is. When I signed up for The Magnificent Mile on Sept. 19, I had no idea what primary lateral sclerosis or spastic paraplegia were. Fortunately, I signed up at The Athlete’s Foot in Cameron Village last week and Sarah Roberts-Witt was on hand. Unfortunately for Sarah, but fortunately for the cause of motor neuron diseases, there probably wouldn’t be a Magnificent Mile.

Sarah is a runner. She ran track at A.C. Reynolds High School in Asheville, ran track in college, at Davidson. “I ran the 1600 and 3200 meters in high school: 5:55 and 13:22 were my best times so I was an average runner but I loved the sport.”

Knee trouble sidelined her for a while, but after the birth of her daughter in 1998, “I got the running bug again. Before I knew it, I was signing up for 5ks, 10ks, and eventually a half-marathon.” She got her 5K time down below 21 minutes, her half marathon — 13.1 miles — her half marathon was in the 1 hour 40 minute range. She began training to qualify for the Boston Marathon. Then, in 2004 —

You know what? Sarah is also a writer and tells her story far better than I can. So let’s let her, with a little prompting.

GGNC: When did you discover you had a motor neuron disorder and how did it initially manifest itself?

SRW: I actually have a disease called Primary Lateral Sclerosis or PLS. It and spastic paraplegia fall under the broad category of motor neuron disease, which includes Amyotrophic Lateral Sclerosis a k a Lou Gehrig’s disease. In PLS and SP (which is often hereditary), the upper motor neurons wither and die. The job of these neurons is to send messages from the brain to the nerves that control voluntary movement. When that pathway is broken, the nerves become confused and the signaling from the brain goes wacky. The result is severely spastic muscles that can often be painful and crampy.

The difference between the upper motor neuron disorders and ALS is that ALS also affects lower motor neurons, which carry the signals from the nerve to the muscle itself. When that stops working, the muscles atrophy and stop functioning, resulting in paralysis and eventually death.

My first symptoms were on my left side in the spring and summer of 2004. My hip was extremely stiff and I was dragging my left foot while I was running. I also wiped out while running several times.  I chalked it up to fatigue and overtraining. Plus, my children were 1 and 5 at the time and fatigue is a natural parenting state. I was also getting sick a lot during that time and eventually ended up in the hospital for the month of October 2004. I had pneumonia and persistent strep infections, and my neurologic symptoms accelerated during that time.

GGNC: I understand it was a while before you were properly diagnosed (the race brochure notes that it can take more than four years for a correct diagnosis). Can you take us through that process?

SRW: Lengthy diagnostic periods are, unfortunately, common for people with motor neuron disease. The overarching reason is that PLS is a clinical diagnosis. In other words, there is no single definitive test that says, “Yes, this is PLS.” The same is true for spastic paraplegia. Though it’s a genetic disorder, not all genes have been identified; many are recessive so the disorder can skip generations. With ALS, the test of last resort is an EMG or nerve conduction study, which will eventually show the loss of lower motor neuron function.

I’ll walk you through my journey, which I’ve learned is not an unusual one. My symptoms, which started in the spring of 2004, were fleeting initially. As I mentioned, my foot dragged but then it would be OK for a couple of weeks. A researcher at Duke, Nina Tang Sherwood, explained to me that our nervous systems will work overtime to compensate for malfunctions, which is why symptoms in motor neuron disorders can initially come and go.

Because of my age — 37 when symptoms started — and gender, the doctors I saw were convinced I had multiple sclerosis. However, my MRIs were always clear. I had five of them in one year!!! Then the theory became that I had Guillame-Barre Syndrome, which is when the immune system freaks out and attacks the nervous system as the result of illness. Eventually, the neurologists I was seeing decided that my symptoms were psychosomatic. One doctor suggested that all I needed to do was sign up for a 5K to “get my mind right.” This was one of the bleakest periods of my life.

Eventually, through a friend of a friend, we landed at the Duke ALS Clinic in August 2005. We saw Dr. Richard Bedlack, who is still my doctor and will speak at Mag Mile. He recognized my symptoms immediately as PLS or something in the spectrum of motor neuron disease. He started me on muscle relaxants, ordered customized orthotic braces for my legs, and assured me that I was NOT crazy or a malingerer. I felt that I was being taken seriously and listened to for the first time.

GGNC: When did you become an advocate and what has been the extent of your efforts with and through the Spastic Paraplegia Foundation?

SRW: After I got the diagnosis in 2005, I found an online support group that was connected to SPF and was very helpful for me. I learned more about the Foundation, which is run by volunteers, has very low overhead, and spends the bulk of its money on research (between 86-90 percent each year). I was a journalist for many years (technology journalist in NYC and California, worked freelance when we moved here) so I help with the Foundation’s newsletter. I’m also on SPF’s Research Grant Committee, which solicits proposals, works with our Scientific Advisory Board to determine which are worthy of funding, and makes recommendations to the SPF board about which ones to fund.

GGNC: How did The Magnificent Mile come about?

SRW: I DESPERATELY missed running and still do. I wanted to find a way that I could be part of the running community and bring awareness to the disease I have. I also thought it was important to have an event that was: a) different, i.e., not another 5K; b) a distance that would be accessible to elite runners, running enthusiasts, those beginning their fitness journey, and walkers; c) a family event and celebration that would bring lots of people together; d) accessible and welcoming to those with physical disabilities.

I’m very fortunate to have AWESOME friends in the running community and an incredibly supportive husband. My friend Lou Ann Bakolia … was the first person I asked to help me create a mile race, and she’s been with me the whole way. The first year, 2006, we held the event at Centennial Campus in November and 400 people showed up to walk and run. It was great!

That proved to us that the concept of a mile race with plenty of offerings for non-runners and kids was actually feasible.  The second year, we moved the race downtown and applied to make it the USATF North Carolina championship race for the mile and it has grown from there. Last year, Bobby Mack set a new state record in a time of 4:10 and we had a little more than 800 participants. We’ve been fortunate to have help and support from some wonderful NCRC people as well. Mike Waldvogel, Rhonda Hampton, Georgia Hagen, Margaret Cooper are just a few examples and some of my favorite people.

Another aspect of building Mag Mile has to do with my children. I wanted to make some positives out of what can be a difficult situation for them. First, I wanted to show them that being disabled by disease doesn’t mean you give up or check out of life. Second, I wanted them to see that we as individuals and a family could make a difference, however small. My husband and I include them in planning and brainstorming about ways to make Mag Mile better each year and encourage them to “spread the word.”

GGNC: What in particular would you like people to know about motor neuron diseases?

SRW: PLS and SP are considered orphan diseases, which means they affect fewer than 30,000 people in this country. Because of that, there is little commercial interest in funding research for treatments or cures. Therefore, it is up to individuals with these disorders and their families to raise public awareness and funds for research. So events like ours serve dual purposes that are equally important. The awareness and education help people understand what motor neuron diseases are, why they are so devastating, and why so little is known about them. The other obvious goal of fund-raising is also key. We’ve raised $150,000 since 2006 and are on track to raise another $50K this year.

Also, I would like for people to know that these diseases, including ALS, don’t affect cognitive function. In other words, I may be confined to a chair and have some difficult speaking but I’m “all there”. I have a new favorite quote about this. I don’t know the source but it reads “Having a disability doesn’t change who you are. . . it only changes what you can do.”

And I even take a little bit of issue with that last part.

Photo: Sarah Roberts-Witt at last year’s Mag Mile. That’s her son, Will, to her left.

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Rarin’ to run?

What: Magnificent Mile

When: Sunday, Sept. 19, 2 p.m.

Entry fee: $10 for recreational and competitive runners 14 and under, $20 for recreational runners 15 and older, $25 for competitive runners (runners who want an official time.)

More info? Visit the Mag Mile Web site.