NEW ORLEANS -- Our late friend and colleague Frank Davis wanted to tell everyone about his condition in hope of teaching and helping others who may one day be diagnosed with the same rare condition.
A day after his death, his family and doctors wanted us to continue that effort.
Frank first had signs of the medical mystery that would claim his life in summer 2011.
It started simply. He felt something was wrong in his fingers when cutting vegetables. By November 2011, he fell getting out of a fishing boat.
He retired from Channel 4 a month later, diagnosed with diabetic neuropathy, which is nerve damage from diabetes. But then more than a year later, in January 2013, he got the real diagnosis, CIDP, which is chronic inflammatory demyelinating polyneuropathy. His own immune system was attacking the casing surrounding the nerves of his arms and legs.
In May, we traveled to Houston where Frank and his wife Mary Clare were living so their daughter and her family could take care of him. We found our once active Frank, in bed, but with a determined mind and spirit.
'I say, 'Honey, you know what I do? I said I would give anything to go to the grocery and do some shopping. I would give anything to just take an onion, chop it up and saute it. I'd give anything to just take a fishing rod and make a cast.' I'm living in Texas, but my heart is and always will be in the gumbo mud of south Louisiana,' Frank said.
This summer, Frank went into respiratory arrest twice. He also had surgery to relieve unrelated vertebrae pressure on his spinal cord from spinal stenosis. The hope was that was the reason he was not responding to CIDP medications.
We all got good news. Some feeling returned in his arms and toes. But in rehab in August, breathing problems again, a rare symptom even for those with this rare condition. Most CIDP patients do well, like Brian Alch of Baton Rouge, referred early on to a neurologist at LSUHSC in New Orleans.
'It's very uncommon. It's very rare for this disease to affect the nerves that go to the muscles of respiration. His case is exceptional. It was exceptionally severe. Most people with CIDP have a much milder and more controllable form of this disease,' said Dr. John England, head of the Department of Neurology at LSU Health Sciences Center.
He did not treat Frank, but his clinic treats CIDP patients from all over the region.
'If it was diagnosed very early, then probably chances of a recovery would have been much more. But as I said, it's not easy to capture that disease early,' said Dr. Aziz Shaibani, one of Frank's doctors and director of the Nerve and Muscle Center of Texas.
Both doctors say getting to a specialist and getting CIDP diagnosed early is crucial. It is commonly misdiagnosed in the beginning. No one knows why the immune system turns on its own body.
After a steady decline, needing oxygen, in and out of nursing homes, 60 pounds of muscle gone, talking and swallowing became difficult.
Last Tuesday Frank said 'I want to keep fighting.' But by Thursday, knowing his condition was not going to get better, his family gave him permission to stop the battle.
With relief, Frank was happy to go home. With hospice and his family at his side, he took his last breath in his sleep at 7:05 p.m. Monday night.
'He is out of his body, free to go fishing in the great lake upstairs,' his daughter Amanda said. 'If he wasn't going to be able to win and if treatment was to prolong his condition, our family said it was OK to go.'