This report airs Dateline Friday, Aug. 11
Pictures from Peter Jensen’s past tell the story of a family man— a devout husband and father, someone eager to enjoy life.
Roshana Jensen, Peter Jensen's wife: What really attracted me to him was his sense of humor and his laughter. He was very caring for other people. In some ways, I guess, you can consider it your little fairy tale marriage— we never fought.
The fairy tale began in 1998 when the then 23-year-old Utah man wed Roshana, whom he’d met at a church function. They would go on to have four children together.
Peter Jensen: I think getting married was probably one of the best things that ever happened to me.
But behind the joy lurked a chronic problem the couple thought was under control: Peter has Tourette syndrome, a neurological disorder characterized by repetitive involuntary movements and vocalizations called 'tics.' Diagnosed at age 11, Peter’s symptoms were largely suppressed by medication until well into adulthood.
Roshana Jensen: We had almost two years where it was very, very mild, and it was wonderful.
Sara James, Dateline correspondent: And when did it get bad?
Roshana Jensen: It started getting bad after our twins were born.
Nationwide, doctors say 200,000 people suffer from Tourette Syndrome. In most cases the tics are relatively minor: repetitive shrugging or blinking, or more notoriously, shouting obscenities. And, as was the case for Peter for many years, often the frequency and severity of tics can be limited with medication.
But sometimes, a person’s body gradually adjusts to medicine until it no longer works... and that’s exactly what happened to Peter. By November 2004, when NBC first met him, the 29-year-old husband and father was at war with himself.
Roshana Jensen: The best way I can think to describe it is its like running a marathon every single day and then taking yourself and beating yourself against a rock for three or four hours.
It was painful to witness for his family, and excruciating for Peter, who was powerless to control urges that compelled him to pummel his own body.
Over the last few years, his physical tics became so violent he damaged his ribcage, his vocal outbursts so frequent, he had trouble completing a simple thought. Doctors considered his case one of the most severe in the country.
Peter Jensen: It’s almost like you’re in the middle of a sprint, a 50-yard dash and you’re running. It’s as constant effort just to get each word out - to be able to just talk.
Roshana Jensen: It's my lifeline quite literally. Without this hope there’s just a loss of so much. The loss of a father, the loss of a husband – and unless we can hold on to that hope, there’s nothing there.
Peter Jensen: It’s a constant effort to get each word out. Eating is quite difficult. It comes to a point where it takes me an hour - 2 hours just to eat. And by the time I’ve done so many of these motor movements and tics, I’ve become so exhausted, I’ve almost lost interest in the food.
With simple tasks so difficult, meeting the responsibilities of being a husband and father were virtually impossible. Peter had to quit his job as a bank teller. He couldn’t drive, couldn’t do work around the house. Wife Roshana had to take care of four children 5 years old and under and her husband, too. Tourette Syndrome was destroying Peter and taxing his marriage.
Then last year, out of nowhere, a possible answer: The couple learned of a landmark trial. Doctors from the University Hospitals of Cleveland wanted for candidates for experimental brain surgery aimed at suppressing severe Tourette’s. Even though they realized the operation was risky, the couple leapt at the chance. In a rare, tic-free moment, Peter explained why.
Peter Jensen: I really don’t have any other choice. If this doesn’t work, if something else doesn’t come along, my body will just wear down eventually.
James: Is then this your last hope?
Peter Jensen: Right now it is. Yes.
But for Peter, waiting for the clinical trial became a race against the clock. By December 2004, one month after NBC began following Peter, his Tourette’s got dramatically worse.
Roshana Jensen: Even taking a shower was getting to the point where it was dangerous cause he would fall.
Roshana told us she had no choice but to place her husband in a nursing home. She said Peter’s tics had become so relentless that he was unable to feed himself... the doctors had warned Peter’s dangerous weight loss, in addition to the constant wear and tear on his body, could ultimately kill him.
Roshana Jensen: Right now what’s been keeping him going is the fact that he’s got a feeding tube, otherwise he would literally starve to death.
When our producer asked peter a strightforward question, he made several attempts over a span of several minutes to respond, but he couldn’t.
Roshana Jensen: You try to talk to him the tics get in the way, and the converation thread is lost very easily.
What made the situation doubly hard, Roshana said, was that Tourette’s Syndrome not only had strained their marriage, but makes it impossible to talk about that strain.
Roshana Jensen: The more stressed he gets, the more he tics.
James: So in essence, to even talk about it would be to make your husband sicker.
Roshana Jensen: Yes.
In her effort to maintain some semblance of family life, Roshana brought the children to the nursing home to visit Peter a few times a week.
But by this stage, even seeing the children seemed too much for Peter. Indeed, he was so choked with emotion that it seemed to prompt an especially intense flare up of his tics.
James: Are they frightened by the tics?
Roshana Jensen: I don’t think they’re frightened by him. A lot of the time, it’s just uncomfortable. His tics can be very loud and that’s not comfortable to them. If you get too close to him you’re bound to get hit. And they just don’t understand that he’s not doing it on purpose.
In June 2005, six months after moving to the nursing home and with his connection to his children increasingly fragile, the Jensens got the big news they’d been praying for.
Doctors were finally ready to begin the trial so Peter could head east, to the University hospitals of Cleveland. Doctors said this high-risk, experimental brain surgery might halt his tics once and for all, and save him from an early death. Of the five patients in their clinical trial, Peter would be first.
James: Peter, you have brain surgery scheduled for tomorrow. What are your hopes for the surgery?
Peter Jensen: Very optimistic... that it’ll all work.
But would it? Everything was riding on it: the life of a dying man, the well being of his young family, and the hopes of others like Peter Jensen were waiting in the wings.
Peter Jensen suffered from Tourette Syndrome so severe, it was slowly killing him. Just two days after his arrival at the University Hospitals of Cleveland, he was prepped for a dramatic high stakes experimental brain surgery, one that doctors hoped would suppress his life threatening condition.
Dr. Brian Maddux, neurologist: There’s a sense of urgency with him. He is, I think, the most severely affected of the patients and so I think it was a natural thing to reach out to him and get it done first.
Neurologist Brian Maddux and his colleague Neurosurgeon Robert Mascunias said Peter was the first of five men in the landmark clinical trial they’d been plotting for months.
Dr. Maddux: Does brain stimulation work for Tourette’s? Does it make tics less frequent, less severe? That’s the central question.
Sara James, Dateline correspondent: So your hope is that this procedure will cure him of his tics, but you can’t make that promise?
Dr. Robert Mascunias, neurosurgeon: That’s correct. It is absolutely an experiment.
This delicate, complicated, two-stage surgery came with the rare but very real risks of any operation on the brain --- coma, paralysis, even death. But it also offered the tantalizing possibility that Peter might get his life back and once again be able to be a father and husband if the operation went well.
Roshana Jensen: The surgery really is our last hope.
James: Is this the ‘Hail Mary’?
Roshana Jensen: This is the Super Bowl, I guess. You either make the touchdown or you don’t.
Doctors would be operating under especially adverse conditions—Peter was, in essence, a ticing timebomb, which is why they fitted him with a device called “halo.” It’s designed to keep his head immobile even if the rest of him twitched and twisted.
Peter says he feels a sense of purpose. If his surgery works, it will be welcome news indeed for some of the hundreds of thousands of other Americans afflicted with Tourette who, like him, have no other resort.
A lighthearted goodbye masked a bundle of worries and tangled emotions that would have to be sorted out after surgery—no matter what happened.
Doctors anticipated a long, complicated day in the operating room. They planned to identify the cells clustered deep in Peter’s brain which they believed were misfiring and prompting his tics. Once the offending area was located, doctors would implant two tiny electrodes which they would later calibrate to stop the tics.
James: So in essence, you’re trying to create an override.
Dr. Mascunias: That’s our hope.
Using sophisticated MRI and CAT scans, lead surgeon Mascunas determined his coordinates to locate a section of the Thalmus at the top of the brain stem which has some responsibility for motor control. Then the pioneering surgery got underway.
Dr. Mascunias: We’ve exposed the part of the brain through which the electrode will go.
With the aid of state-of-the-art imaging, doctors used a hair-thin probe to search for the offending cells.
They reasoned that the target area for Tourette’s would prove to be the same area which had been found to alleviate tremors for some Parkinson’s patients.
Like several other especially invasive brain surgeries, it was imperative in this deep brain stimulation that Peter be awake so that he could respond to doctors’ questions and commands.
They needed to make certain that nothing they did impaired his mental—or motor—ability.
But keeping someone undergoing brain surgery under light sedation—especially someone with Tourette Syndrome—was tricky and potentially hazardous. Even with the halo, there is the possibility of some sudden movement, and that could be deadly.
Eight hours after the surgery began, doctors believed they’d implanted the electrodes in exactly the right spot.
Dr. Mascunias: Everything went smoothly and well.
Roshana Jensen: Thank you for pursuing this and giving him a chance at life again.
Dr. Mascunias: I pray it works with all my heart.
It was a prayer echoed by Roshana, who had borne the weight of Peter’s problems and all it had done to the family for years. We found her, pensive and alone, confronting the monumental change this operation could make in Peter’s life, and in hers, too.
Roshana Jensen: It’s just the end of a long road, so I’m just realizing it.
When peter came out of the O.R., his tics were gone. But doctors said that was only temporary—a result of the trauma of the operation itself—and it was too early to know whether the surgery had worked. But Peter was all smiles. He was happy, it seemed, that the danger was behind him, happy just to hold Roshana’s hand again.
Several days later in a second operation, doctors installed a sort of pacemaker beneath Peter’s collarbone to power the electrodes. It would take several more weeks to adjust the device and learn, whether it would work.
Would Peter be able to walk, to talk, to eat, to play with his children without the storm of extraneous movements which made everyday life sheer torture?
Would Tourette’s Syndrome patient Peter Jensen be freed from the tics that were so bad they were killing him? Peter’s wife Roshana was both hopeful and anxious.
Roshana Jensen: I just wish that I could have a normal husband there, and a normal dad that could be there and do all the things without the stress and the worry of the tics behind it.
But Roshana couldn’t stay in Cleveland for the next few weeks while doctors activated and programmed Peter’s device. The Jensen children needed their mom back. So a few days after Peter’s second surgery Roshana flew home to Utah.
In the month that followed, while she was consumed by the challenges of taking care of four little children on her own, Roshana was also elated by a telephone call from Cleveland... and a simple chat with her husband unlike any talk they’d had in years.
Roshana Jensen: He was out sightseeing. He was walking around. He was talking. He was doing just about everything a normal person would do.
He could carry on a fluid conversation. It was exciting. It was really good to hear. It just gave a lot of hope, just that, you know, it’s only gonna get better from here.
But the day before Peter’s scheduled trip home, Roshana got shocking news. While Peter’s brain surgery seemed to have stopped his Tourette’s, incredibly, he’d had a mental breakdown.
Roshana Jensen: What’s happened is that he’s basically had a psychosis episode. It was to the point where he was delusional, that people were chasing him, tracking him. He was trying to jump out of cars.
Sara James, Dateline correspondent: Paranoid and delusional?
Roshana Jensen: Yes, very paranoid. It’s been a lot of tears this morning.
It was hard for loved ones to hear that peter was now confined to a psychiatric ward at the hospital.
What had happened? Neurologist Brian Maddux,one of the clinical trial’s lead doctors, was puzzled himself.
James: What do you think was the cause of his psychotic episode?
Dr. Brian Maddux: We believe that the operation itself did not prompt it. And we believe that the activation of the stimulator did not prompt that. But I can’t tell you any of that with 100 percent certainty.
James: Is it possible there was an underlying pre-existing condition that suddenly was revealed after you got rid of the tics?
Dr. Maddux: It certainly is possible.
James: The bottom line is that you aren’t entirely sure what caused Peter Jensen’s breakdown?
Dr. Maddux: Nope. That’s right.
After spending 12 days in University Hospitals of Cleveland’s psychiatric ward, Peter seemed to get better -- well enough that doctors gave him the okay to return to Utah.
Nevertheless, Roshana made a major decision: that Peter was not yet ready to return home.
Roshana Jensen: I’ve got 4 little kids, and they’re saying that these episodes, well, they can’t guarantee they won’t occur again. They’re hoping they won’t. But it’s very hard for me to want to bring that back home. Right now it’s very hard to know what to expect anymore.
After arriving in Utah, Peter moved into a halfway home for people working through health problems.
In spite of his struggle, Peter told us there had been much to celebrate.
Remember, almost two years ago, his violent, relentless tics left him unable to eat on his own or walk normally and he couldn’t carry on a conversation.
But thanks to a dramatic reduction in tics, his life underwent a remarkable turnaround.
Peter Jensen: I’m doing real well. I feel good and adjustments take time, but things are really going well.
The man who was virtually helpless was now able to cook and eat on his own, even shave himself. And for the first time in years, peter was able to hold a book steady enough to read. In fact, he enrolled in school to learn how to do architectural drawings on computer. He even began tutoring.
In December 2005, Peter was still living in the halfway house. He visited with Roshana and the children once a week. It appears this separation will be permanent.
Roshana told us after all they’ve endured, she can still be Peter’s friend and supporter, but not his wife, and has asked for a divorce.
Roshana Jensen: It’s very hard for him. He’s struggling with it, but he’s been very good in saying, you know, “It’s okay, I understand.”
Peter Jensen: It’s better for me to focus on me right now so I can get myself healthy and strong so I can do what I need to do.
Not a fairy tale ending, to be sure. But then, not an ending at all. For Peter Hensen, a pioneer, he’s proved that other Tourette’s sufferers like him can reclaim their lives. He’s embarking on a new beginning—one not defined by Tourette Syndrome.
And for a man who was on the brink of the abyss, starving to death, tortured by his own body, this indeed is a life transformed.
Peter Jensen: It is a beautiful thing right now to be able to live and be alive and to see birds fly through the air. It has made me appreciate a lot of things and how many blessings we have.
Four other people with Tourette Syndrome have now had the same surgery that Peter Jensen had. Doctors say the procedure was a success for most, but not all, of the patients.
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