Living with Parkinson's Disease

What do Muhammad Ali, Janet Reno, and Michael J. Fox all have in common? A debilitating and degenerative disease called Parkinson's. First diagnosed in 1817, Patrick Martin has Parkinson's disease. He has suffered from the disease for more than 14 years.

I listen to Patrick's labored breathing over the static of the baby monitor that connects our rooms. Patrick will need his medication soon. With Bach playing in the background, I try to fall asleep, hoping that the breaths I hear won't be Patrick's last.

"Steve?" an almost inaudible sound crackles over the monitor. My eyes open and I wait for confirmation that it isn't my imagination. And then I hear Patrick's anxious, shaky voice as he calls again, "Steve...? Steve." "Coming Patrick!"

I throw back my covers, jump out of bed and head across the house, guided into Patrick's room by a series of nightlights along the hallway. "How ya feelin' buddy?" I ask.

"Better pull back these covers and give me some medication," Patrick replies from a fetal position on his twin bed. "Can you sit me up and give me one-seventy-five? It's gotten pretty cold in here."

"No problem, buddy. Let me go ahead and sit you up," I reply.

Patrick, his wife of 52 years, Eloise, and their cat, PC, live in a small house in northern Eureka. Originally from San Jose, they moved to Humboldt County to be closer to Daniel, one of their sixchildren. Their house is relatively new, and looks almost unlived in. Their son hasn't had time to completely unpack their belongings, so the boxes remain in the garage.

Patrick Martin has suffered from Parkinson's Disease for more than 14 years. photo by Stephen Valgos

"Well, we don't drive anymore so the garage makes a pretty convenient place to store the things we don't really need everyday," said Patrick. Only things like furniture, dishes, clothes and all things symbolic of God find their way into the house. Left in the garage are books, pressure gauges, springs, magnets, coils, and many boxes with more of the same. All these things scattered about, Patrick says, remind him of his childhood in Springfield, Illinois.

Patrick grew up only a few feet from a railroad track in Springfield. He laughs as he recalls being known as an "alley rat."

"Back then, well, things were a lot different from now," he says. "People used to dump their ashes in the alley and we used to dig through it to see what we could find."

Patrick tells of their biggest find -- the innards of an old piano. "We had more wire, and pieces than we knew what to do with." Since he was a boy, Patrick has had a thing for finding out what makes things work.

In June 1944, Mr. Patrick Martin enlisted in the service as an electronic technician and became Seaman Martin, U.S. Navy.

"We worked on sonar, radar, and radio communication," Patrick recalls. "Back then it was the equivalent of three years of electrical engineering."

Patrick was never asked to use his skills in combat. Although his unit was training for an invasion of Japan, the war ended before his time came and in August of 1945 he went to the Philippines instead as a member of the Navy's maintenance force.

The GI Bill was, for Patrick, the best thing the military had to offer. "Back then only rich people went to college. The GI Bill provided poor kids, like me, with the chance to go to school when they got out," says Patrick.

He is under-medicated now and needs help with any movement requiring motor skills. "Maybe some Jell-O will help," he says. I oblige and fill a bowl to the top with fruit cocktail and strawberry Jell-O and begin to feed him. In between mouthfuls Patrick tells me about the thousands of calories he must eat daily to maintain a healthy weight.

"It's like I'm constantly flexing," he says. "All day I'm either over- or under-medicated."

The result of being over- or under-medicated is either a constant shake or a flex, respectively. These involuntary muscular contractions burn so many calories that it is all Patrick can do to maintain his weight. He tells me he went from 200-pounds to 130 -- losing more than one-third his original body weight -- in only five years. Dr. Carl Fullbright, the chief of medical staff at the Humboldt State University Health Center, confirmed that this is a common effect of Parkinson's disease.

According to the American Parkinson Disease Association's website www.apdaparkinson.com, Parkinson's is a degenerative illness that affects motor skills due to the death of certain dopamine-producing brain cells.

Over time, with the inability to produce and store dopamine, Parkinson's patients lose their ability to control their voluntary and, ultimately, involuntary motor skills, ending in paralysis and death.

In affected patients, the brain sends a signal to their body to complete a function, but their body fails to respond appropriately, having never received the entire message, if any at all. So the answer then is to boost the levels of dopamine in the system to create balance, otherwise knows as "being on."

"I'm starting to come around now. Yeah, that's better now," Patrick says. His voice begins to relax a little, his speech and his breathing even out. The dopamine is being distributed and he is able to move again. No longer confined to his chair he can now begin to use his hands. Patrick stands up and sits back down a number of times to get his legs going again until he finally moves behind his wheelchair. With a relieving sigh he asks, "Ok, where were we?"

"Over time, with the inability to produce and store dopamine, Parkinson's patients lose their ability to control their voluntary and, ultimately, involuntary motor skills, ending in paralysis and death."

Only 10 minutes before I was feeding him by hand and now he is pushing his wheelchair around the table. Taking note of my amazement, Patrick adds that it won't last long. His "on-time" isn't more than 10 to 15 minutes now. Without a dopamine reservoir to access, he will soon be under-medicated and will begin to tense up again.

"We were just about to talk about your college," I blurt out, still astonished at his newly found mobility.

"Right! If it weren't for the GI Bill I could never have attended St. Ambros," he says proudly. The GI Bill, Patrick explains, at that time covered the entire cost of tuition, but it now only covers about 35-percent of the cost. In the spring of 1950, Patrick Martin graduated from St. Ambrose College, in Davenport, Iowa, with a degree in chemistry and a minor in physics.

"I owed it all to the military, so I decided to give back to the government what it gave to me. I enlisted as an officer in the U.S. Navy Reserve and was commissioned as a line officer in 1950."

While serving in the Navy Reserve he attended graduate school at the University of Iowa and received his Master's of Science in analytical chemistry.

He was honorably discharged in 1946 at the rank of lieutenant junior grade. After the war he went to work for a major insurer of chemical plants and petroleum refineries for nine years, analyzing business interruption and property losses for this and other major insurance companies.

For 16 years Patrick conducted contract research and laboratory operations at SRI International (formerly Stanford Research Institute). There he specialized in nuclear fuel cycle business opportunities, uranium recovery during phosphate fertilizer production, wind energy machines, thermal energy storage in pulp and paper industries and batteries for dispersed energy storage in electric road vehicles, to name only a few.

"We were working on alternative energy sources long before the rest of the U.S. thought it was an issue," he says proudly.

Patrick is sitting again. Enthralled with our conversation about wind-generated electricity and primary batteries for missile-defense rockets, I scarcely noticed that he is sitting again and has lost the use of his extremities.

"Think you could give me 175?" he asks.

Martin developed a method by which L-dopa, the medication used to treat Parkinson's Disease, can be absorbed quickly through the mucous membranes. photo by Stephen Valgos

"Sure," I say as I remove 175 mg of his medication, L-dopa, from his pill container, put it in his mouth, and give him milk from his spill-proof child cup.

"Thanks. And some liquid now," he says.

I tilt a different bottle to his lips and give it a squeeze, squirting a stream of liquid into his mouth. He swishes it around, asks for another and does the same two more times. The "liquid" he refers to is a clear fluid in a small eyedropper-type bottle. It looks like water to me, but he calls it MucosL-dopa.

He explains that L-dopa, in pill form, must be ingested and then is absorbed into the bloodstream through the digestive process. This process can be severely hindered by diet. There is much uncertainty about how long it will take to "kick in," and how long it will last, if at all. The average wait from ingestion to effect can take up to four hours. This is, for him and many others with Parkinson's, an eternity.

"It's like waiting for water to boil. I couldn't wait anymore," he says. He needed a better solution to his problem so, like a true chemist, he went to work.

Patrick found that the L-dopa could be absorbed directly into the bloodstream via the mucous membranes in the mouth and nose. He found that using over-the-counter medical supplies, he could make the liquid equivalent of the pill L-dopa. By simply administering into the mouth and swishing, it is absorbed through the oral mucous membranes.

The MucosL-dopa is absorbed and distributed into the bloodstream. This method reduces Patrick's wait-time to somewhere around 10 to 20 minutes instead of four hours. The MucosL-dopa does not replace pill-form L-dopa, but is instead used by Patrick as a supplement to the pill. Realizing how important his discovery is, Patrick e-mails, calls, and writes to other Parkinson's patients who are also tired of waiting for control over their body.

"We're all in kinda the same boat," he says. "I wouldn't be doing any good if I didn't tell my friends about it."

Patrick is getting tired. He is increasingly restless, and shaky and is visibly becoming exhausted by the interview process. Patrick explains that he rarely, if ever, has the confidence to leave the house. The uncertainty of his condition is overwhelming and to venture out-of-doors is too great a risk for him. He prefers to stay inside and carry with him always his pillbox, his "liquid" and his glasses.

Patrick's condition continues to deteriorate. His "on-time" is shorter and shorter now. He must take more drugs, more often, to function normally. We stop talking and Patrick again begins to wait for his medication to kick in.