Sometimes, strength is refusing to be buried by fear. Sheila Hellman, D.O., is better with a shovel than most.
A family physician who was diagnosed with myasthenia gravis(www.myasthenia.org) in 2007, Hellman was forced to leave her medical career behind for a time, but now operates a solo practice in Jonesboro, Ark. She said that as far as she knows, taken together, those two facts leave her peerless.
"I called the AAFP and the AMA and the AOA and asked if they could refer me to any physicians who'd had this disease and returned to practice," Hellman said. "I was told 'no' by all three, as well as the national and state myasthenia gravis foundations, before I asked my neurologist the same question and got the same answer. My otolaryngologist was the only one able to tell me anything, which was about a physician in town who years before had had the disease.
"He said they'd had to trach (the patient), put him on a ventilator and he'd died. After that, he turned to me and said, 'That's how all of you die.'"
According to the NIH, myasthenia gravis is an incurable disorder without a known cause. Much like muscular dystrophy, the disorder weakens skeletal muscles, worsening with activity and improving with rest. Chief among complications of the disease is myasthenic crisis -- an acute life-threatening inability to breathe that necessitates assisted ventilation. Patients with myasthenia gravis also have a higher risk of other autoimmune disorders, including thyrotoxicosis, rheumatoid arthritis and systemic lupus erythematosus.
- Family physician Sheila Hellman, D.O., was diagnosed with myasthenia gravis in 2007 and told she most likely would not be able to continue practicing medicine.
- A neuromuscular disorder with limited treatment options and no available cure, myasthenia gravis affects approximately 20 out of 100,000 individuals in the United States, according to the Myasthenia Gravis Foundation of America Inc.
- Hellman now runs a solo family practice in Jonesboro, Ark., where she specializes in addiction medicine.
Although there is no known cure for the disease, treatment may allow patients to experience periods of remission.
For someone who lives alone, off a dirt road on a farm tucked into a back corner of rural Craighead County, Arkansas, this diagnosis isn't just a problem. It could be a death sentence.
Hellman said that one evening she became terrified when she was nearly unable to roll over and sit up in bed.
"I realized that if the house was on fire, I couldn't get myself out," she said. "I experienced profound exercise intolerance and loss of muscle strength with repeated use of the same muscle group. So, walking from the den to the bathroom became quite an adventure. Initially, trying to get to the bathroom, take a shower, get dried off, get clean clothes on and get back to the den was a day's work."
An ice storm that knocked out power to the farmhouse for three-and-a-half weeks essentially added insult to injury, Hellman said.
"Extremes of heat and cold completely unravel my function," Hellman said. "So the storm hits and suddenly the house is freezing cold, with no way to heat it. I knew my neighbor, a registered nurse … had a wood stove, but she is far enough away that by the time I got there, I couldn't speak or swallow and I was having trouble walking. I went over and sat by the stove, and after several minutes, I could explain to her what had happened."
Family physician Sheila Hellman, D.O., lives alone on a farm in a remote corner of rural northeast Arkansas. Hellman was diagnosed with myasthenia gravis in 2007.
Hellman said the experience brought her isolation into stark focus.
"The ice storm had taken the trees down over the road," she said. "We're out in the middle of nowhere and we are the last priority for chopping any trees down to get anybody in or out. So, planning -- how I will stay cool in the summer and warm in the winter, how I will avoid getting into a position where I am unlikely to be able to react -- became a big item for me. It's a little scary, but you plan around this and you assemble a different life."
That plan, Hellman explained, includes recognizing and avoiding the stresses and triggers that attack her ability to function and embracing the practices and behaviors that do not.
"I have to try as hard as possible to set myself up for success," she said. "And that's what I try to get my patients to do, as well -- to plan for success. Make it possible that you can do as well as you can by attempting to foresee what may happen in a situation and making a plan to deal with that."
Ralph, a border collie that had been severely abused that Hellman rescued was a "class clown," she said. She marveled at how he was able to find joy even after experiencing extreme pain.
In her spare time, Sheila Hellman, D.O., focuses a lot of her energy on dog rescue. Although collies are generally her go-to breed, Hellman said she's also rescued several other breeds, as well as mixed-breed dogs.
"My dogs come from bad situations, from the street, abuse and neglect," Hellman said. "I've taken dogs from pit bull fighting bait rings, puppy mills, you name it."
"When they come to us, they've a variety of physical and emotional needs, and one of the great things I've learned from the dogs is emotional resilience," she said. "They demonstrate a remarkable capacity to forgive and to learn to love, as well as a remarkable capacity to make great lives and enjoy life -- be playful and affectionate -- in spite of ongoing challenges that many humans would consider a disability. With appropriate care, many of them function quite well with only three legs or if they're blind or if they're deaf."
But, Hellman said it isn't just her taking care of the dogs. Diagnosed in 2007 with myasthenia gravis(www.ncbi.nlm.nih.gov), she has, at times, relied on her canine friends as much or more than they've relied on her.
Ralph, a border collie who came to Hellman after being severely abused, showed her it was possible to find joy even after experiencing extreme pain.
"Ralph blossomed into this wonderful class clown, which was just amazing to me that he could make that journey," she said. "Every day he greeted me and the world with such enthusiasm and with this big, whole-body smile. He was just an incredibly joyful dog."
At one point, she said, she was having a great deal of difficulty standing up, walking and maintaining balance, so she trained two large male collies -- Romeo and Theo -- as service dogs.
"I taught them how to come stand next to me to help me with balance as I was standing up, and they walked with me and went outside with me in case I fell and needed some way to stay warm until someone could come help me up," Hellman said. "They also learned how to fetch the phone, my shoes and the remote, as well as how to stand up and turn the lights on and off, and how to open and answer the door. They both were remarkably attuned to my needs, and would come sit with me when I was feeling depressed and sad."
One of the dogs, Romeo, died recently -- a sad fact Hellman has had to come to grips with.
"Romeo was in robust health right up until the end and he knew I loved him and he'd had a good life," she said. "Theo is still with me, but he is in failing health. He's no longer a service dog for me, but he is very much a loved pet."
Hellman said her ultimate goal was always to go back to work, but because the medications she was taking early in the course of her disease -- pyridostigmine and prednisone -- only helped to a certain extent, she went in search of physicians and other health professionals who'd had success in treating the disease. She also consulted a host of other resources.
Early on, she said, everything she read was either depressing or terrifying -- tails of circling the drain, declining function, winding up dying in a nursing home on a ventilator, dying young. But finally, after "driving medical librarians across the continent crazy," she came across Canadian research examining diet and exercise in myasthenic mice that appeared promising.
"Although it had not been applied to humans, it looked really interesting to me because it did not alter my immune function as the prednisone did, nor was it going to give me liver or bone marrow failure or lymphoma, like you experience with some of the immune-altering drugs that (my physicians) were trying to get me to take," she said. "So I started on what I call a high ORAC (oxygen radical absorbance capacity) diet. Darker, richer color foods -- blackberries, blueberries, raspberries, lentils, black beans -- have higher ORAC scores, and I found that when I ate a minimum of 20,000 ORAC units a day, my function started to improve."
Not surprisingly, Hellman said she experienced pushback from her doctors and decided to go off the diet. But when her function started to decline again, she made a decision.
"I said, 'OK, this is a study group of one, but it's working,' so I went back to the diet and I've been doing it since," she said. "There were some studies in mice that talked about various kinds of exercise being more helpful for retaining or improving long-term endurance … so I played around and found that I could do certain exercises and maintain certain function … if I do a few reps, several times throughout the day."
Aerobic and resistance exercises, dance, walking, and other movement-based exercises became part of the daily routine, Hellman said -- anything that allowed her to push aerobic exercise almost to the point of fatigue before stopping to let herself recover. In time, with the help of an exercise physiologist, she was able to increase her physical capacity.
"Now, it's two-and-a-half years later, I've returned to full-time practice and I'm taking care of myself and my home," she said. "I just knew that if I gave in to this disease and sat on the couch and watched Oprah -- that was it; I was going to be a statistic.
"I had no intention of doing that. If this disease wants me, it is going to have to come and get me."
Even as she continues to regain her legs, Hellman said her "admittedly off-beat" solo family medicine practice is beginning to find its own.
"This is probably not a practice that's going to make anybody a million dollars, but I've been open almost a year, and if things continue to grow (at the present rate), I'm going to start breaking even in a couple of months," she said, laughing.
On a more serious note, Hellman admits she has a particular ideology when it comes to interacting with patients. "People who just want to come get a pill are probably not going to be happy here," she explained.
"I want the patients who want to participate in their own health care and understand the thing we all have in common: We want our lives back. I don't want my life defined or restricted or ended by a disease, and I don't want that for them either."
In working with patients with addictions, Hellman said she spends a lot of time on emotional support, sometimes using her own experience as a template in helping them work their own plan for success.
"I think it helps to have a sense of humor with the patients and just have them understand that none of us asked for this, but we're in this boat together, so let’s figure out how we can make it a little better," she said. "It's no fun and nobody asked for it, but boy, isn't it nice when you can set some goals and meet them and return to a decent quality of life … to return to doing the work you want to do?"
One of Hellman's patients, Mark Johnson, said he draws inspiration from knowing how hard Hellman works to overcome her own struggles to treat patients like him who are fighting addiction issues. He also was quick to point out that Hellman is not one to suffer fools.
Hellman bought a second house close to her office in Jonesboro, Ark., for times when weather could potentially leave her stranded at the farm. The house is physically less challenging to navigate and maintain and is close to a fire station.
"Seeing patients like she does and still battling with what she does on a day-to-day basis, it takes a great human to do something like that," Johnson said. "As an opiates addict, I see her to get medication to help me with my treatment. And the treatment really works, but only if you use it right."
"It is the whole program or nothing with her, and that's a good thing," he said. "There ought to be more doctors like that."
As part of her own plan for continued success, Hellman also bought a house in town close to her office for those times when she needs a safer, more structured environment; one that's not only less challenging physically, but also a place where help can get to her more easily.
"At the farm, the road floods, ice storms knock the trees and power lines down, and we are literally the last people in the county that they reconnect," Hellman said. "So when I went looking for a house in town, I tried to plan for any contingencies. The electrical lines are all underground and I'm very close to a fire station, so they're eager to keep that area up and running with services and the firemen are trained in emergency medical response."
At the end of the day, Hellman said, all of it -- the planning, the exercise, the diet and the commitment to herself to keep at it, one step at a time -- is about supplying her with enough function to continue practicing family medicine the way she believes it needs to be practiced.
"We always talk about treating a disease, and while patients want their disease treated, to be sure, what they really want is the return of function," she said. "I wanted my life back and so do my patients. I want to be able to get up and walk and run and kayak and take care of my dogs and put my fencing up on the farm and go out and handle my trees, and I want to be strong again."