It’s not the way he prefers to get from place to place, but Mike Jezdimir has become somewhat of an expert at maneuvering his scooter through tight places.
|Mike Jezdimir (left) works with Spain Rehabilitation Center Physical Therapist Melissa Daniel during a recent session. Jezdimir came to UAB’s Department of Physical Medicine and Rehabilitation for help with transverse myelitis.|
He zips it in and out of elevators and through the Spain Rehabilitation Center physical therapy center with ease. He also uses it every day to get around his home in Maylene.
But Jezdimir is working hard to ditch his wheels. He is determined to not let transverse myelitis keep him from doing the one thing he desperately wants to do.
“I’d like to get to the point where I can walk without the aid of a walker,” Jezdimir says. “I’d be happy with my cane again.
“And I’d like to walk hand in hand down the street with my wife Lou Ann.”
Jezdimir says the treatment and care he has received at UAB is going to give him an opportunity to do just that, “and that’s all I can really ask.”
This isn’t a new battle for Jezdimir. The 61-year-old Michigan native has spent the past 44 years fighting each day to have a high quality of life. His foe in the fight has been transverse myelitis, a neurological disorder caused by inflammation of part of the spinal cord. Attacks of inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body.
Transverse myelitis occurs in adults and children, and peak incidence rates occur between 10 and 19 years and 30 and 39 years. Approximately one-third of those with transverse myelitis get better and return to their baseline. Another third will have some changes to their body that will affect them the rest of their life. The final third are left with some type of permanent disability.
For Jezdimir, the result of transverse myelitis has left him where he can’t feel pain or hot or cold from his chest down. Because of this, Jezdimir has to be extremely careful getting into the shower; water too hot will burn him easily, and water too cold can cause his muscles to weaken to the point where he could fall. He also has muscle spasms that cause his body to stiffen frequently, sometimes up to two times per hour, and they can last for several minutes each.
“I think I have a lot of pain,” he says, “but I describe it as sensation because I can’t tell if it hurts or not unless it’s above my chest.”
None of this has deterred Jezdimir through the years, however.
It was the summer of 1967 when transverse myelitis hit him, and it came out of nowhere. The then 17-year-old worked his shift pumping gas at a Detroit-area gas station and began to feel ill. His arms suddenly became sore, and when he arrived at home, he told his parents he didn’t feel well. They suggested he lie down and rest. When Jezdimir woke up six hours later, he was completely paralyzed from the neck down.
Doctors initially thought Jezdimir had polio or Guillain-Barre syndrome. Eventually they discovered changes in the spinal cord, between the C5 and C6 vertebrae in his neck, consistent with a viral infection. He was told he would never walk again and likely never feed himself again.
“They put me in the hospital for 29 days with no physical therapy at all,” he says. “All they did was turn me around so I wouldn’t develop bed sores.”
After 29 days, Jezdimir began moving two fingers and he was transferred to a rehabilitation center. Since that day, Jezdimir has spent his time learning about how transverse myelitis affects his body and he has done everything in his power to find the proper medical care to aid him in his pursuit of a high quality of life.
“I’ve had this for 44 years, and I’ve been to a lot of places for physical therapy,” Jezdimir says. “But until I came to UAB and Spain Rehabilitation Center, I realized I had missed out on a huge opportunity. This place is a diamond in the rough.”
Change in care
Jezdimir came into the care of Amie Jackson, M.D., chair of the Department of Physical Medicine and Rehabilitation, a little more than two years ago when he was at one of his worst points physically.
He had taken the drug baclofen orally for years in an effort to help treat his spasms, but the oral treatments were no longer effective. Instead, the drug was wearing him down and zapping him of his energy.
Jackson recommended to Jezdimir that he have an intrathecal baclofen pump installed in his body. The pump, which is placed under the skin in the abdomen, uses a catheter to dispense the baclofen into the space just outside the spinal cord. It enables the medicine to be dispensed at a higher concentration than what can be given orally and at the direct point of insult.
After some initial complications, Jezdimir had to have the pump revised. He learned quickly that the revision was working, even though what he felt scared him. With the pump working properly, the medicine went to work quickly and Jezdimir suddenly felt extremely weak.
“He had not been that weak since his initial injury,” says Sharon Renfroe, nurse practitioner and manager of UAB’s intrathecal baclofen pump program. “He went back to that time and thought he was worse than he had ever been.”
Jezdimir’s wife, Lou Ann, says that moment put Jezdimir at his lowest. And she says Renfroe was there to reassure.
“Sharon was off, but she came in to see him in the hospital on his worst day in there because she knew he was having a very bad day,” Lou Ann says. “You don’t see that everywhere.”
Jackson and Renfroe told Jezdimir that the pump was working like it was supposed to by taking away the uncontrollable spasms that made it seem like he had a lot of muscle movement. However, those same severe spasms were often fighting his ability to voluntarily move his muscles. Now he was going to have to learn to use some muscles he hadn’t used before while other muscles had to be used in different ways.
Lou Ann says the initial attack 44 years ago left her husband’s muscles like a checkerboard. He had good muscles in some places of his body and bad muscles elsewhere. Jezdimir developed his own physical therapy routine through the years to build up the good muscles to sustain him. He also learned to compensate for the muscles that didn’t work.
He has undergone numerous outpatient and home physical therapy treatments during the years and had seen four doctors about his condition before coming to Jackson.
“He’s done amazingly well,” Jackson says. “He’s really taken very good care of himself. He’s lived with transverse myelitis longer than any person I know.”
In fact, Jezdimir has been more functional than doctors and even some of his loved ones ever thought he could be.
Earning his way
Jezdimir was the second of eight children, and his parents wanted him to sit on a street corner and sell pencils out of a wheelchair as a way to try and make a living. He met Lou Ann in Kalamazoo, Mich., in May 1971, and they both had other ideas.
The Jezdimirs were married in November 1971, and she demanded he get a college education — and he wanted one for himself. So he earned his engineering degree from Western Michigan while building his career as a draftsman at Stryker Corporation. He eventually worked his way to director of engineering. He left Stryker to work in the plastics industry before his condition forced him to retire nine years ago. “He went beyond the wheelchair and selling pencils on the corner,” Lou Ann says proudly.
Jezdimir has had many other successes. He has been able to walk most of his life using either an arm crutch or a cane. He used to fish and play golf occasionally. The Jezdimir’s used to even play a slow game of tennis together. And he and Lou Ann also had two boys — Mike and Mark — who moved to Birmingham more than a decade ago; the boys ultimately are the reason why the couple is here.
“They wanted us down here so they could look after us,” Lou Ann says. “It’s been a blessing, because we would have never found UAB without it.”
And that’s why Jezdimir continues to press on. His surgeries and the installation of the intrathecal baclofen pump have changed his life for the better, he says.
Jackson, Renfroe and Robert Brunner, M.D., medical director of Spain Rehabilitation Center, helped get him on the right path with the pump. And his stay in UAB Hospital after two surgeries made a positive impact on him as well. “The nursing, technical and patient care staff at UAB are first class,” he says. “They are compassionate and caring, and I was treated with respect and genuine concern for my wellbeing.”
And then there are his therapists — Melissa Daniel, a physical therapist, and Evelyn Outlaw, an occupational therapist — in Spain Rehab. They were charged with helping Jezdimir learn to use his new muscles and help him incorporate better transfer techniques into his routines. Jezdimir and Outlaw worked on learning how to get in and out of the wheelchair to stand, sit and get in the shower, among many other techniques.
“He is a hard, hard worker,” Outlaw says. “He would try anything if he thought it would help him get better.”
Jezdimir and Daniel worked to strengthen his muscles through rigorous exercises and learn new transfer techniques. “The most unique thing is that he’s so far from his original injury,” Daniel says. “He had a lot of ways he was performing a transfer or getting up and moving around that he had adapted on his own. We had to work on tweaking his technique rather than starting from scratch. For him to be willing to try those new things and be motivated for something that has almost been life-long now is just huge in his recovery.”
Jezdimir and Daniel certainly made an impression on each other. He was appreciative she was willing to listen, and she was equally appreciative he was willing to not let his condition define who he is.
Jezdimir’s spirits were lifted that much more by Daniel when she called him on a football Saturday just to make sure he was ready to watch his Michigan Wolverines play that afternoon.
“I mean, she called me on her day off just to make sure I was going to watch the game,” Jezdimir says. “Who does that? And who comes in on a day off like Sharon Renfroe did just to make sure their patient is OK?”
Jezdimir has completed his physical therapy sessions at Spain Rehab. He continues to see Jackson regularly, and Renfroe refills his intrathecal baclofen pump every six months.
And Jezdimir continues to work daily at home with a physical therapist twice a week and on his own the other days. He just has one goal in mind — parking his scooter in the garage.
“I’m confident we’re on the right track,” he says.