The twins that tamed tremors
By Talal Elmasry
By the time Janet Plum made the short but taxing trip to serve the coffee, the mug was only half full. The missing morning brew would be dotted on the floor
behind her in a trail that traced back to the pot on the kitchen counter.
For Janet, the uncontrollable shaking was causing her frustration to boil over. The only silver lining was that she knew before she called to confirm it that her identical twin sister, Janis Mason, had already been experiencing the same thing.
“We’re very close. It’s like ESP. If something happens to her, it happens to me,” Janet said. “Every time we have a problem or something, we’d call each other. I said, ‘I have this shaking in my hands and my head bobs, and I don’t know why. There’s something wrong.’”
Other conditions they’ve shared simultaneously in their 78 years: frozen shoulder, foot spurs, migraines. Essential tremor, a neurological disorder that primarily affects the upper extremities and occurs during action or movement, was no different.
“In the case of Janis and Janet, we had never met a pair of identical twins before with essential tremor, but they both had very similar presentation,” said Justin Hilliard, M.D., their UF Health neurosurgeon. “They had developed tremor about 30 or 40 years prior to when I had met them, and it progressively worsened over their lifetime.”
Janet and Janis were born five minutes apart in McMinnville, Tennessee, in 1943. While they’ve shared many medical hardships, they’ve also shared a wealth of happy times. Both now live in Melbourne, Florida.
“Hopscotch, swimming, we played accordions in band,” said Janet.
They couldn’t help but share genes, and essential tremor sometimes is hereditary. In the twins’ case, it runs on both sides of their family. The women recall uncles with hands and bodies that shook.
Essential tremor is a common neurological disorder that affects 4 million Americans. Although it’s unrelated, it often is mistaken for the better-known neurological disorder, Parkinson’s disease.
Hilliard discussed the option of deep brain stimulation, or DBS, with Janis and Janet. The twins had tried to medically manage the tremor, but it progressed until they were left with a tough choice.
The two eventually decided to do it together, just like they did most everything else. First up for the surgery would be Janis, or “Big Red,” as Hilliard came to know her.
“She says she always goes first.”
DBS was approved for treating essential tremor in 1997, the first movement disorder to do so. The twins were screened for surgery via a thorough evaluation, which included physical and cognitive tests. Janet and Janis were ideal candidates because they had tried medical management but the tremor still affected their quality of life.
UF Health neurologists’ first step is to use brain mapping to find the most appropriate location to place the DBS lead with millimeter accuracy, and that’s done using the halo or “crown,” a large device placed on the head while the patient is awake.
Under the skin’s surface, a wire connects the lead to an impulse generator implanted in the upper chest to send continuous electrical pulses to block the tremors, working much like a pacemaker. The generator can be controlled remotely.
Michael Okun, M.D., chair of the UF College of Medicine Department of Neurology and executive director of the Norman Fixel Institute for Neurological Diseases at UF Health, has played an essential role in some of the pioneering studies related to DBS. He says the identical twins pose a mystery, because essential tremor typically manifests in only one twin.
Asked how quickly after surgery they saw results, the twins chimed in to say “right away” — in unison, of course. Before they left the operating room, the UF Health team tweaked the settings of their impulse generators numerous times, gauging the effects by how well they could draw circles, but more importantly, write their names legibly.
That’s something Janis hadn’t done in 20 years. For Janet, it had been 15.
“We both cried. I said … if I can write, I would love it. I would love it. And when I got to write my name, I can go to the ballot box and be proud to write my name again,” Janis said, starting to cry.
“That was the icing on the cake. It was wonderful. You just don’t know how wonderful it was. We can put on our makeup,” Janet said. “And I can do it in five minutes instead of an hour!”
Since the surgery, more skills have returned. Janis can work with stained glass. She paints and bakes cookies without getting flour everywhere. Janet no longer uses a straw and can sign greeting cards to her heart’s content.
“They brought me back to see her, and I cried myself because she was so stable,” said Pat Murphy, Janet’s significant other. “It was as near to a miracle as I’ve seen in my life.”
The improvements will keep coming for the twins, whose lives were limited by tremor for decades. One thing Janet does know: her mug-half-empty days are over.