Lukas Bengtsson had an unwanted partner during the 16 games he played with the Wilkes-Barre/Scranton Penguins last season.
In what was to be a promising rookie season for the puck-moving defenseman from Sweden, Bengtsson never got on track.
He never felt right, and it wasn’t until this summer that he discovered what was wrong.
“I was playing with a disease I didn’t know about,” Bengtsson said.
At the beginning of training camp in 2016, Bengtsson was diagnosed with Lyme disease. It made sense at the time as he recalled being bitten by a tick while playing golf in Sweden during the summer.
But as the season began and then progressed, Bengtsson never felt right. Additional tests failed to turn up an alternative diagnosis and the issues - fatigue and soreness to name a few, never waned.
Bengtsson made it into the lineup for a 16-game stint from November to early January, but was sidelined again with the symptoms initially thought to be Lyme disease.
Still, Bengtsson knew it was something different.
“It was pretty frustrating not to have a diagnosis and walk around sick and do tests for months. We had no clue what was going on and it got worse and worse,” he said. “On the toughest days I just stayed in bed. I’d sleep for 12 hours, eat, and then in bed the rest of the day. It was probably one of the toughest years of my whole life.”
It wasn’t until late this summer that Bengtsson found what had been plaguing him all of last year. After two misdiagnoses of Lyme disease, a trip to the Mayo Clinic in Minnesota revealed Bengtsson had postural Orthostatic Tachycardia syndrome (POTS), a rare disease that impacts the body’s blood flow.
For Bengtsson, POTS also impacted his ability to play hockey and, even worse, lead a normal life.
“If you broke a hand or a foot, you know in six to eight weeks you’ll be back. With this, I was trying to get back on the ice and it just returned all the time,” Bengtsson said.
Now that he has an accurate diagnosis, Bengtsson knows what he needs to do to manage the disease and stay on the ice. The most important treatment to keep the symptoms at bay is to simply move.
“These days if I get tired I take a walk or exercise. When I’m moving my body I feel better,” Bengtsson said. “I have to do it every day because if I skip it I can feel worse.”
As far as playing the upcoming season while managing the disease, Bengtsson said he has to make the daily decision if he feels good enough to play.
He’s optimistic he’ll be ready on most nights.
“Now that I have a diagnosis I know the difference of being tired from practice and being tired from POTS disease,” Bengtsson said. “Now, if I feel something I know what to do.”
• Wilkes-Barre/Scranton reduced its training camp roster on Thursday, sending forwards Daniel Leavens, Tom Mele and Kenny Ryan and defenseman Danny Fick to the Wheeling Nailers. The Penguins now have 45 players remaining in camp.
• Zach Aston-Reese had a flashback to his college days at Northeastern when he played in Pittsburgh’s preseason opener at Penn State’s Pegula Ice Arena on Sept. 19. Aston-Reese, who was re-assigned by Pittsburgh earlier this week, had a goal in the contest.
“That game was exciting. My mom made the trip up and I have some buddies still playing at Penn State so they got to see me,” he said. “You could just feel it when you came out for warmups - just the atmosphere, chants and the signs.”
After playing with Evgeni Malkin and Phil Kessel on a line in Pittsburgh’s training camp, Aston-Reese practiced with Colin Smith and Daniel Sprong on Thursday at the Mohegan Sun Arena. He also played on the top power play unit with Sprong, Tom Kostopoulos, Adam Johnson and Lukas Bengtsson.
• The Penguins play their second preseason game on Friday, hosting the Binghamton Devils at the Mohegan Sun Arena at 7:05 p.m.