Undiagnosed illness leave former reporter wanting answers

Anita Ferguson Todd sits on the porch at her home in Berlin. A mystery disease had Todd and doctors unsure what was plaguing her. (Eric Doerzbach photo)

Anita Ferguson Todd is used to getting answers. As a local newspaper reporter (she once worked for The Daily Times) she knows the importance of asking the right questions, the thrill of tracking down a source, the satisfaction of connecting the dots. So when her right arm started feeling funny in spring of -- "heavy and stiff" -- Todd sought out an answer.
It would be two years before she got it.

"I would wake up crying. I felt like I was in a hole and I was falling and seeing less and less light. Not knowing what's wrong and being in medical limbo -- it's just not a comfortable place for me."

Stress was the culprit, Todd was told at first. Newly married, with husband Joel Todd gearing up for re-election as state's attorney for Worcester County, Todd could accept it was something that simple. "But I was stressed because I don't like going to doctors," Todd said. "I just thought I was getting old." She was 44.

By summer, the weakness in her right forearm had spread to her left arm and right foot. She started to have "little balance issues." Muscle relaxants didn't help and a visit to a neurologist produced a clean electromyogram, the test used to record electrical activity in muscles. When a friend suggested Lyme disease, Todd sought out a Lyme specialist. Her blood tests came back positive. "I thought, that's curable; I'm going to get better."

She got worse. A heavy course of antibiotics, she says, left her nearly lifeless. She woke up one night in an emergency room where blood tests and a spinal tap showed no signs of Lyme. When Todd requested the records from her original blood test, she was shocked to see those results, too, gave no indication of Lyme disease. (She suspects the test results were mixed up, but has not spoken to the doctor who diagnosed her with Lyme disease.)

By winter, the stiffness had spread to her face. The stress of the election was gone, but Todd's medical mystery was growing deeper. There were lingering suspicions of amyotrophic lateral sclerosis or Lou Gehrig's disease. "So now I am really stressed," Todd said.

Another round of EMGs led to a dead end. A muscle biopsy ruled out muscular dystrophy. A new doctor suggests ... stress.

"She told me it was my career. When I told her I wasn't working, she said, 'Well, maybe you need to.' So either I am a stressed career woman or I'm a desperate housewife -- I can't be both," Todd said.

Her next stop was a movement disorder specialist, who noted the symptoms were consistent with Parkinson's. He suggests a "wait-and-see" approach. The reporter in Todd grimaced. "I like to have information," she said. "And that wasn't good enough for me."

Todd agreed to a trial of a Parkinson's drug called Mirapex. Within a few days, the weakness started to disappear.

"I felt great," Todd said. "Hyper, but really good."

It wouldn't last. In just a few weeks, the symptoms were back. Todd made a trip to the Mayo Clinic in Florida, where she was directed to an autonomic specialist. He doesn't believe Parkinson's is the answer, but asks if she wants to try another round of medication.

"And I said no. I was finished. I'm not seeing any more doctors, not taking any more drugs. I don't feel like I'm going to die and I just needed a break."

Todd says if not for her husband, she would still be "breaking." Earlier this year, he encouraged her to contact the National Parkinson Foundation.

"I couldn't get the Parkinson's out of my head, but I didn't want another dead end," Todd says. "And I never had a tremor (a hallmark of Parkinson's disease)." The reporter gives a wry smile. "It turns out I don't describe things very well."

Todd was having tremors, a feeling she describes now as a cell phone set to "vibrate" going off in her arm. In May, she was diagnosed with young-onset Parkinson's disease. Her reaction was simply relief.

"And not many people understand that," Todd said. "But I've done a lot of research, and I really think there will be a cure for this."

Now back on Mirapex -- this time a dose that is keeping her symptoms in check -- Todd is anxious to talk to other young Parkinson's patients.

"People who are younger have different challenges, getting a job, working, putting children through college, so I'd like to see what their strategies are."

With guidance from the Parkinson Foundation, she is now in the process of starting a support group locally for Parkinson's patients under 50. "And if it's only three people who want to get together once a month and talk about things or whine about things or share stories, we can do that," she said.

Anyone who is interested can contact Todd at yopd1961@comcast.net.

"I don't want to just talk about doing something, I want to do something," Todd said. "If I really think about it, I guess I just want to know that there are other people facing the same things I am."

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