Patient, doctor battle terminal disease with positivity
Dec. 03, 2013 @ 07:24 PM

Chris Rosati dreamt of stealing a Krispy Kreme delivery truck and driving it across town in a high-profile police chase. With glaze covering his face, he would give away doughnuts and incite smiles from complete strangers.

Rosati lived out his dream Tuesday without going to jail – he rolled up in the Krispy Kreme Cruiser, a 1960 Starliner bus that smells like a bakery, and delivered 1,000 doughnuts to Duke clinics and his old school, Durham Academy.

He doesn’t focus on the negative – Rosati is going to die soon. The 42-year-old was diagnosed three years ago with amyotrophic lateral sclerosis, or ALS, a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. It’s terminal, incurable, as doctors, researchers and patients around the world commit themselves to finding the cure and alternative therapies that would make the final stage of the disease more bearable.

Box after white box of glistening, warm doughnuts were passed to the staff of Duke’s ALS Clinic Tuesday. Rosati’s doctor, Richard Bedlack, wore a pointed Krispy Kreme hat.

“You continue to make lemonade out of lemons, man,” Bedlack said. “I’m really proud of you.”

Rosati said that after he was diagnosed, his Krispy Kreme fantasy emerged as a way to do something crazy; to feel alive.

“My doc says I gotta gain weight!” Rosati said, grinning. “… Allow yourselves to eat at least one and think of me.”

Bedlack and the Duke ALS Clinic see 12 to 18 patients every Tuesday. Some of them travel five hours just to get to the clinic, and many have lost all motor function – they are paralyzed. Some are on a breathing machine. But they still make their appointment, in which they see a team of therapists and experts, specializing in areas from swallowing and communication to nutrition and ALS research.

Bedlack saw his first ALS patient when he was a Duke neurology resident in 1995, and he said the effects of the disease are both fascinating and horrifying.

“It’s incredibly mysterious,” he said. “We still don’t know why people get ALS.

“Every one of my patients dies. No matter what I do, they all die.”

From the moment he steps into the exam room, Bedlack hopes to make his patients smile. He brings a quirky fashion sense with him to clinic, wearing bright red psychedelic jackets or black scarves with purple skulls and matching purple plaid pants.

On his left wrist is a small, black swallow tattoo – the little bird serves as a reminder of one of his ALS patients.

The Duke ALS Clinic serves hundreds of patients and there’s still a huge need. Bedlack splits his time between Duke and the Durham VA Medical Center. Veterans are twice as likely to develop the disease than the general population. Bedlack said in the Durham VA’s electronic medical records, there are potentially more than 550 veterans out there with ALS or another motor neuron disease, and perhaps only 10 percent of them have been seen by a neurologist.

To combat the difficulty ALS patients may have in making their appointments, whether they live in rural areas or suffer from worsening symptoms, Bedlack started an ALS telemedicine clinic for the Durham VA in September.

He has four patients enrolled in the video-chat program so far. One hasn’t left home in more than a year, uses a ventilator and controls a computer using eye movements due to paralysis, but the session allows Bedlack to see if the patient needs equipment repairs or medication adjustments.

“We have so much more to offer these people now,” he said. “I’m very excited about what’s coming around the corner in the next few years.”

The next phases of the project may bring nurses into the homes of ALS patients, where the nurse can use the telemedicine technology to transmit pulmonary function and vital readings through the program to the doctor. Another phase would be setting up ALS telemedicine programs at other veterans hospitals and primary care clinics.

Until a cure is found, Bedlack said, ALS is about focusing on hope rather than numbers and algorithms. In Rosati’s case, he said, it’s about fighting the disease in every way they can, by spreading positivity and smiles.

“Life goes on,” Rosati said. “No matter what.”