After Bob Gross hit the ball and ran to first base, he passed out.
His doctors had told him not to do it. He was told to save his flagging energy levels for the important things.
“I knew my softball days were done. I felt like I lost 90 percent of me that day,” said Mr. Gross, who had been an athlete all his life and, as a young man, worked as a bouncer. “When I went to my car, I sat on the edge of the trunk and cried for about a half hour, knowing that I can never do this again.”
Nor would he golf ... or swim.
The grim reality was his body, hindered greatly by MELAS syndrome, a mitochondrial disease known as mitochondrial encephalomyopathy with lactic acidosis and stroke-like episodes, was not going to let him live a life of gusto. So he gave up softball that day in 2008 — and now years later has taken up weight lifting.
He hasn't passed out yet at the gym. But he is living a life of determination one day at a time.
It wasn't always that way. His body seemed to be powering down for years. Supplemental oxygen had become as much a part of his days as the presence of his wife, Theresa, and their children.
“If it wasn't for her, I wouldn't be fight things so hard,” Mr. Gross, 55, said.
Mitochondria are the powerhouses of cellular activity. They process oxygen and convert food into energy. Located in nearly every cell of the human body, mitochondria produce about 90 percent of the energy needed to survive. In Mr. Gross' case, the mitochondria are unable to produce enough adenosine triphosphate (ATP), which is important to forming thoughts, and moving a muscle. MELAS syndrome is genetically inherited from the mother and is rare, with only 1 in 4,000 people having the condition, according to Dr. Jason Mears, graduate program director in the Department of Pharmacology at Case Western Reserve University.
A progressive disease
“We keep putting band-aids on the dam," Mr. Gross said of the more than 43 surgeries he has had from multiple specialists and hospitals, ranging from Cleveland Clinic to Mayo Clinic and University Hospital in Cleveland. He has spent time at Wildwood Surgical Center in Toledo and St. Luke's in Maumee. Multiple surgeries have been completed at University of Toledo Medical Center, he said.
“It's been scary. I've gone to approximately nine different hospitals,” said Mr. Gross, who originally lived in North Olmsted, Ohio, and then moved to Maumee for work opportunities.
He has undergone MRIs, CT scans, bloodwork, physical therapy, pain medications, and lots of depression.
There is no cure for MELAS mitochondrial disease, which most often begins in childhood, Dr. Mears said. There is no remission.
The medical testing Mr. Gross has undergone includes numerous nerve conduction studies, which involve placing electrodes on the skin over the nerve being tested. A mild electric shock is delivered and the speed of the muscle response is recorded.
There are expensive prescriptions he often must pick and choose between because Mr. Gross cannot afford to pay for them all. He's had what is known as a “mito cocktail”, a combination of vitamins and supplements that is unique to each mitochondrial disease patient.
“It is better for the patient to take one thing rather than 10,” said Dr. Mears, adding that the condition most often presents itself in childhood. “It is devastating for people who get this.”
Since Mr. Gross first sought treatment for his condition in 2004, his personal dictionary of medical terms has expanded to encompass spontaneous compartment syndrome and muscle fascia. He has learned that he is allergic to Vicodin and nitroglycerin.
Spontaneous compartment syndrome is when pressure builds up in a muscle compartment, such as the arms, impairing blood flow and damaging nerves and muscles. Mr. Gross nearly lost each of his arms due to this condition. He was saved on two separate occasions when doctors spliced through his muscle fascia, a thin casing of connective tissue that holds muscles and organs in place. The fascia in his arms remain cut to allow for any continued inflammation of those muscles.
In 2013, he also had to have the same operation on his lower legs.
And those particular muscles have become quite solid since Mr. Gross began weightlifting in 2022. It wasn’t what his doctors suggested. That physical activity put him at risk of death. But frankly, Mr. Gross says he is at risk of death when he is sitting on his couch watching the world go by his front window.
Since he can no longer work, lifting weights is better than obsessing over his creatine kinase levels — more medical technology to add to his brain — which were 3,351 in November. Normal levels range from 30 to 223, according to a note on his test results. This enzyme is released into the bloodstream when muscle damage is occurring, according to Dr. Mears.
“Muscles are full of mitochondria,” Dr. Mears said.
Mr. Gross says his mental outlook improves when he visits the gym. It is where he socializes. He can share his story and hear others' stories as well. He has left all of his emergency numbers and instructions at the front desk of LA Fitness, on North Holland Sylvania Road.
He says he has left bitterness behind, but fatigue walks with him every day. He maintains a relationship with God, which has been tumultuous at times. He falls behind in his rent, and electricity payments, his water bills.
Life expectancy for a person with mitochondrial disease varies widely, from a few years to a normal expectation. There are drugs being developed, and the IMARC Group, a market research company, reports that treatments may grow from a $155 million industry in 2023 to $448 million 2034. The growth is attributed to a growing prevalence and recognition of mitochondrial mutations.
As MELAS progresses, muscles and organs falter and need help. For instance, a pacemaker is keeping Bob Gross' heart from fibrillating. Partial blindness in one eye means he can no longer drive. Screws keep his spine together.
Mitochondrial disease affects every system in the body. Mr. Gross says one day it might be pulmonary, and the next it could be neuromuscular, then it hits his cognitive abilities.
His doctors note that he has to portion his energy throughout the day. Each bundle of effort can be visualized as a spoon.
“They call us spoonies,” said Mr. Gross, saying that he might start with 20 spoons each day.
“Just getting out of bed, I might use two spoons,” he said of a morning following a difficult night of his ventilator alarming. “On a normal day, take the dogs outside. Make breakfast. Take my pills.”
Maybe he moves the laundry from the washer to the dryer. Has he used three or four more spoons?
He may want to go outside and cut the grass, or go to the store.
“By mid-afternoon, my spoons might be gone,” said Mr. Gross, who likes to save a few spoons for weightlifting when he can.
"I do it mainly for my mental health,” he said of weightlifting. “It keeps me off the pills doctors want to push down your throat.”
“Without the gym, I have nothing to keep pushing me to not quit on myself,” he said. “The gym keeps me sane.”
First Published March 2, 2025, 5:00 a.m.
