Matthew Diaz: Battling Back against Parkinson's Disease
Matthew Diaz
Matthew Diaz of Dallas was diagnosed with Parkinson's disease in 1998 at age 38. At the time, he and his wife had two small daughters and no idea how their lives would change.
Nine years later, Matthew was almost completely bedridden before opting to have deep brain stimulation surgery and effectively turn back time in the progression of his disease.
Matthew's Story
Matthew Diaz was in the prime of life, working in his dream job when he was diagnosed with early onset Parkinson's disease in 1998 at age 38.
At the time, he was a computer programmer for a worldwide technology giant and he was teaching night classes at a local university. "I would be at work, typing away, and I would notice that my left hand couldn't keep up with my right hand," Matthew said. "I thought I had carpal tunnel."
Matthew went to the doctor thinking he would come out wearing a hand brace.
Note: This is a longer version of a report broadcast on
WFAA-TV, Channel 8, Defying the Odds: Stories of Hope.
Call toll-free 1-877-THR-WELL or Contact Us online for a physician referral
or to learn more about about deep brain stimulation and other procedures
available in the hospitals of Texas Health Resources.
"When I found out it was Parkinson's, I was devastated," he said. "My first thought was that I'd be in a wheelchair, drooling, in three or four years. I thought I would be a complete invalid."
As a father of two little girls, Matthew's biggest fear was that he wouldn't be around to see them graduate from high school and college and get married. His oldest daughter, Giovanna, was 5 at the time. Olivia was 2.
Life with Parkinson's
Parkinson's is a degenerative disorder of the central nervous system that often impairs motor skills and speech.
Matthew continued working full time for five years after his diagnosis, taking multiple medications every three to four hours. At first, his stiffer, slower movement and slight tremor were mere inconveniences that required him to take more time to complete each task. But slowly, his disease was progressing and his symptoms were worsening.
"The exact cause of Parkinson's disease is not known, but we do know that patients with Parkinson's experience a loss of cells in an area of the brain called the substantia nigra," said Dr. Elizabeth Peckham, Matthew's neurologist at Texas Health Presbyterian Hospital Dallas. "This area of the brain produces dopamine, which helps control movement."
Like many people with Parkinson's disease, Matthew's treatment involved taking an array of medications that can be effective for several years at calming symptoms. But the medicines eventually become less effective.
"I used to get stuck places for hours at a time because I would take a bus or train to a store, and my medication would wear off while I was there," Matthew said. "I would have to take another dose of medicine and wait at least 45 minutes for it to kick in before I could function well enough to get home."
During the fifth year after he was diagnosed, Matthew was taking a medication that had emotional side effects. Unfortunately, the drug had not been on the market long at the time, so he and his wife, Lara Guerra, had no warning about the side effects.
"I was really almost psycho at the time," Matthew said. "It caused compulsive behaviors. All of a sudden, I was buying handfuls of lottery tickets right and left. I'd never bought a lottery ticket in my life! I would come home, and my wife would find the scratch-offs all over the floorboards of the car."
Matthew and Lara look back on that year as the most trying they have faced as a family.
"His behavior, due to the medication, was really disturbing," Lara said. "It was all we could do to hold ourselves together."
Laura recounted an incident with one of their daughters that year that highlighted how difficult things had become.
"My older daughter had to go in for a routine shot, and they went up to her, and the nurse put the needle in and she goes, ‘Ow, it hurts, it hurts, it hurts! Oh I hate it when daddy falls, I hate it that he's always sick, I hate it that he can't play with me,'" Lara said. "I started to cry, and the nurse looked at me and the doctor looked at me and he took me by the arm and he led me out and said, you need to get these girls someone to talk to right now."
By the time he reached 43, Matthew's symptoms had progressed too far for him to be able to function at work, so he quit his job and Lara re-entered the workforce.
Matthew, who has a doctorate in computer science, said it was difficult for him to leave his work behind at such a young age.
"I didn't enter the workforce until I was 30, so I felt like I was just getting started," he said.
Still, he was able to keeps things in perspective.
"You go through the ‘Why me' part, but it could always be worse," he said. "One time, I was in a bathroom, fixing my tie, and I was having trouble with my tie, and I was getting irritated. Then a guy walked in with one arm, and I said, ‘OK, I get the hint.' At least I have both my arms to work with."
The Surgery
By 2007, Matthew's symptoms had rendered him mostly bedridden. During the day, he would wake up in the morning to see Lara and the girls off to work and school, then he would go back to sleep until they returned home that night. He would visit with them for about an hour before he had to go back to bed.
That year, Matthew opted to try a specialized treatment known as deep brain stimulation surgery, a procedure that involves implanting an electrode with four electrical contacts directly into the subthalamic nucleus of the brain — the precise area responsible for controlling movement and muscle function.
Doctors performed the surgery at Texas Health Dallas in November 2007.
"We don't have it exactly worked out how Parkinson's disease affects the brain but we do know there are certain areas of the brain that are hyperactive, and if we can slow those areas down, it actually improves the patient's ability to move," said Matthew's surgeon, Dr. Michael Desaloms.
Desaloms, chairman of neurosurgery at Texas Health Dallas, has performed more than 300 deep brain stimulation surgeries, making the hospital among the top 12 institutions in the nation offering the procedure.
To help guide him during surgery, Desaloms uses a special stereotactic head frame in combination with MRI imaging to map the brain and pinpoint the exact location to implant the electrode.
"We can see both the patient's brain and these markers on the stereotactic frame, and using that and a mathematical computer formula we're able to target areas deep in the brain with accuracy," he said.
The implanted electrode is then connected to a thin insulated wire, threaded under the patient's skin from his head to his upper chest, and connected to a neurotransmitter — a small, sealed device similar to a pacemaker.
In order for doctors to know they are targeting the right area, the patient must be awake during the surgery.
Rehabilitation
For Matthew, the results of his surgery were almost immediate.
"They were finding things for me to do in rehab, and I was standing on my toes, playing cards, whistling a tune, I was acing all the rehab tests," Matthew said. "I've had worse flus than I had with the brain surgery."
Lara said she was stunned by the difference in Matthew when the stimulators were first turned on after surgery.
"He was able to walk, he was able to skip, and just act silly again spontaneously," she said. "It was truly a gift. It has truly changed our lives. We're able to be a family."
One day as Lara and her older daughter were leaving the hospital, they turned and looked up at Matthew's window, and he was standing on the windowsill, dancing, Lara said. That was a happy moment.
"It really opened up a whole new world for me," Matthew said. "It's added years and years and years to my quality of life."
Life after Surgery
Despite everything they've been through, Lara said Parkinson's has been good for their family in one respect.
"Daddy is always home for dinner, always there to help the kids with their homework," she said.
Last summer, for the first time in more than five years, the family took a vacation.
"It was so wonderful to be able to travel again," Lara said. "Before the surgery, we couldn't even go together to the grocery store or to Target."
At home, Matthew is able to cook family dinners, keep up with household chores, and spend more quality time with his family.
Matthew has also re-connected with some hobbies he enjoys. He often helps neighbors fix problems with their computers, and as a beekeeper, he tends to multiple colonies of honeybees in his backyard.
"It is very therapeutic - you go out, and you get suited up, and there's 50,000 bees flying around," Matthew said. "You have to move slowly, which is very good for me."
Looking back on the last 10 years, Matthew's only regret is that he didn't have the surgery sooner, he said. He still moves more slowly and deliberately than he did before he was diagnosed with Parkinson's. He also experiences some tremor, and the disease has affected his speech.
"My daughters actually make fun of me because of the Ozzie Osborne commercial where he mumbles," Matthew said. "They say I sound like him."
One thing is certain: Matthew's sense of humor is intact.
"You have to laugh," he said. "I always joke that I'd make a good martini mixer: shaken, not stirred."
