J-B’s Alley recuperates, back in gym > Neuromuscular autoimmune disease plagued veteran coach

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JONESPORT – With one quick quip and a flash of his trademark sly grin, Ordman “Ordie” Alley returned to the gym Monday and rejoined the team he has coached for the past 32 years.

“Have I got a diet for you,” a noticeably slimmer Alley cracked as he strolled across the Jonesport-Beals hardwood to help the Royals begin their second week of preseason practice.

His diet was quite simple, and very effective. But don’t expect the method to become a cult favorite: Alley just didn’t eat any solid food for nearly two months because he was unable to swallow.

After spending the summer and fall undergoing a barrage of physical exams and tests in order to find why he was getting weaker, experiencing double-vision and having an increasingly hard time breathing and swallowing, Alley finally found an answer.

Though he wouldn’t call himself “healthy” Monday, he was certainly improving. And after months of mystery, Alley’s malady finally had a name – myasthenia gravis – and he had a course of action.

In October, Alley spent 11 days at Bangor’s Eastern Maine Medical Center, but went back to Beals with a feeding tube in his stomach, and without a diagnosis. Alley subsequently sought treatment Nov. 9 at the Lahey Clinic in Burlington, Mass., and was quickly diagnosed with myasthenia gravis.

“In a half-hour’s time [Dr. Claudia Chaves] knew what my disease was,” said a grateful Alley, who had lost 40 pounds – down to a low of 194 pounds.

Myasthenia gravis is a neuromuscular autoimmune disease marked by a weakening of the voluntary muscles.

It is caused by a defect in the neuromuscular junction, which is the place where nerve and muscle connect, and is the most common neuromuscular junction disorder, according to the Neurology Channel Web site.

Autoimmune diseases are diseases caused when the body’s immune system mistakenly attacks healthy tissues and produces so many antibodies that the tissue becomes damaged.

At his worst, Alley said, he could not muster enough strength to clip his fingernails, fasten his pants or lift his arms above his head to wash his hair.

Alley, who was diagnosed with prostate cancer earlier in the year, had expected to undergo surgery in mid-December. On Monday Alley said doctors have assured him there’s no problem with waiting until he’s stronger before having that procedure performed. CAT scans and bone scans had already shown the cancer to be confined to the prostate, and the sense of urgency was relatively low.

Alley said he worried that his weakening condition might somehow be related to that cancer – and still thinks there could be a relationship.

His rapidly weakening condition came to a head Oct. 13, when Alley was lobstering with his son, Troy.

Ordie had been treating the swallowing problem – which doctors thought might be a yeast infection – by drinking diet shakes and gargling a solution designed to fight the infection.

After lobstering all day and gargling again, his condition worsened.

“He said, ‘I can’t breathe. I’m gonna die,”‘ Troy Alley said.

Doctors told Alley that the solution he’d gargled may have irritated his bronchial tubes.

Alley was rushed to shore, taken by ambulance to Machias, and later transferred to EMMC.

But once there, doctors were stumped.

Alley and his wife, Donna, headed to Massachusetts on Nov. 9, and treatment at the Lahey Clinic quickly paid off.

He was treated as an outpatient and stayed in a motel for several days, until a particularly scary night when he couldn’t breath or swallow and was concerned that he might choke to death if he didn’t get to the clinic.

Doctors admitted him that night.

Alley underwent five days of plasmapheresis, in which his blood was pumped out of his body and his plasma was replaced.

Taber’s Cyclopedic Medical Dictionary says the disease can be “rapidly fatal [with] death resulting from respiratory failure.” The same source refers to plasmapheresis as a potentially life-saving treatment option in severe cases.

“The first treatment [was unpleasant] but the next four treatments, they could have sucked me right dead [and I wouldn’t have cared],” Alley said.

“After my second [treatment] I began swallowing the secretions in my mouth,” Alley said. “After the third, I ate.”

Alley’s first solid food in nearly two months was a cracker topped with peanut butter and barium used in a test to see whether he could swallowx.

“The minute I tasted that peanut butter? You tell about something that tasted good. I chewed it up and I’ll be damned if I didn’t swallow it,” he said.

“I couldn’t believe it.”

But he wasn’t finished there. That night he ate a meal: baked macaroni and cheese … one noodle at a time.

“And the next day,” Alley said with a grin, “Ordman Alley had Thanksgiving dinner.”

Included on the menu that day was … everything Alley hadn’t eaten for months.

“That was my first real day of solid meals and I ate everything I could get ahold of,” Alley said. “I ordered two tubs of ice cream at every meal, breakfast, dinner and supper. Two cups of custard. Yogurt. Anything I thought I could get into.”

Alley’s prognosis is good, he said. The disease will need continued treatment that currently includes three steroid pills a day. He also may go back for additional plasmapheresis treatments to purify his blood.

Troy Alley coached the team for the first week and led the Royals to the championship in the preseason Worcester Wreath Classic in Machias over the weekend.

Those games were the first two Ordie Alley had missed since Jonesport-Beals High was formed for the 1968-69 school year.

“Now the only difference between he and I are 491 wins,” Troy Alley joked, leaving out the 13 Eastern Maine and nine state championships his dad’s teams have won.

But Troy does have a good sense of history, and of how high the expectations are around Jonesport and Beals.

“I told the kids, ‘If we lose down there, I’ll be run out of town,”‘ Troy Alley said.

The return of Ordie Alley was welcomed by his veteran team, including standouts Dwight Alley and Alvin Beal.

“I just think it makes it whole with him here, because it’s been no different forever,” Dwight Alley said. “He’s been here all the time. And I don’t think a change right now is what we want.”

Beal said the thing he missed most was the playful atmosphere the longtime coach brought to the gym every day.

“He wasn’t there joking around like usual. Troy was fun, but we missed [his father],” Beal said.

Beal and the rest of the Royals visited their coach when he was hospitalized in Bangor, and said the man they saw then bore little resemblance to the man they knew.

“It was quite scary,” Beal said. “Most of the people [around town] said he wouldn’t be back. But he told us he would be there and I believed him.”

Ordie and Donna Alley drove back from Massachusetts on Saturday. On Sunday, his players visited him at home and brought him the trophy they’d won in Machias.

On Monday, he returned to the gym.

And on Tuesday? He had another piece of his recovery tentatively planned.

He can hear the call of the ocean, and of lobstering.

“Believe it or not, I was thinking about [going] tomorrow,” he said Monday night.

“If it’s real pretty, I won’t be a bit surprised if I’m in the boat.”

But even if he’s not, Alley said things are a lot better than they’ve been for the past few months.

“It’s so nice to be home,” he said.