Family puzzled by disease

Huntington Herald Dispatch - Huntington,WV,USA
It’s 8:30 a.m. on a Thursday morning, and Juanita Foster has just finished her midnight shift at Charleston Area Medical Center.

The cardiac nurse’s work however, is not done.

She walks into her Milton home, where her 39-year-old son, Dwane, lies on a daybed in the living room. His youngest son, 17-year-old Codi, sleeps on a couch nearby.

Juanita and Codi team up to help Dwane to a nearby recliner, where Juanita can give her boy his medicine - Rocephin, taken through an IV in the chest, and part of the $2,600 in medication that Dwane Foster is taking in hopes of getting back on his feet.

In the course of the past year, Dwane Foster has lost several abilities that are usually taken for granted and others that he worked hard to achieve. In January of 2004, the 39-year-old was bench-pressing almost 400 pounds. Today, he can no longer walk. He can no longer feed himself. He can speak, but it’s a struggle and sometimes requires translation from his loving mother or sons.

Trouble is, he’s not sure of the cause. All these months that disease has ravaged Foster’s body, he’s been struggling to navigate his way through the complexities of the health care system to find the correct diagnosis, and hopefully, a viable treatment plan. He’s had two diagnoses, Lou Gehrig’s disease, which doctors say they cannot treat, and Lyme disease, which is treatable.

While doctors have worked hard to help, finding a straight answer in the sea of health information from professionals and the Internet has been no small task for the family.

"This is probably the most devastating thing I’ve ever seen - the toll it takes on his life and his whole family," his mother, Juanita Foster said. "You wake up every day wondering what (function) you’re going to lose that day."

A quick decline

Foster first started noticing that something was wrong in the spring of last year. He started feeling tired all the time and having hot flashes. A machinist at Special Metals, Foster also was feeling intense pain in his neck and shoulders from his grip on the machinery. On a bike trip to Myrtle Beach, he had trouble using the brakes of his motorcycle because of paralysis in his left hand, and he was having trouble sleeping at night because he couldn’t keep his leg still.

"We’re talking about a man who was taking care of a farm and a new wife and going out to the gym," Juanita Foster said. "We’re talking about somebody who wasn’t a crybaby. He was taking care of business."

His left foot started to drag. Gradually, other typical movements became more difficult, and functioning slowed. An MRI revealed that he had stiffening of the spine, but a diagnosis was slow to come.

At the end of August, when he went to have shoulder surgery, a physician told him that he had ALS, otherwise known as Lou Gehrig’s disease. Amyotrophic lateral sclerosis, a disease more commonly known for the name of the professional baseball player who suffered from it, is a neuromuscular disease that shuts the body down one muscular function at a time. The mind stays intact.

He went for a second opinion from a neurologist, and heard the same thing.

At that point, "I really fell apart, physically and mentally," Foster said.

Usually, when someone receives an ALS diagnosis, they’re given little help, Dwane Foster said. Medical professionals may try to help make your life more comfortable, but there’s no treatment.

But Foster, with his health failing but the support of loved ones, pressed through the jungle of medical information out there - both online and offered through medical staff. It wasn’t long before he heard about a man who had similar symptoms and was bedfast, but started a treatment plan for Lyme disease and now was more than 90 percent recovered.

Foster, an outdoorsman who lived on a 230-acre farm in Waterloo, Ohio, had been exposed to many ticks, which transmit Lyme disease. He remembered finding some embedded in his chest, and so got tested. He tested positive and thus started the treatment plan in hopes that the Lyme, and not the ALS, is the cause of his ailing health.

Whatever he has, he’d like to think that he’s fighting Lyme disease, his mother said.

"It’s hard for a man who’s always been independent not to be able to blow his own nose or feed himself," Juanita Foster said. "The message is: Don’t give up."

She just hopes it’s not too late. "Because ALS is something you can’t treat, doctors say, ÔDon’t come see me unless you have trouble breathing or swallowing," she said. "Then if you have Lyme, you might not get help until it’s too late."

Although Lyme disease doesn’t get much attention compared with other disease, "when you find out how widespread it is, it’s scary," Juanita Foster said.

And it’s expensive to treat. Fellow workers at Special Metals have raised money to help Foster cover medical expenses because to this point, he’s given up a lot of what he owns to pay for his medicine and 22 supplements, most of which help strengthen the immune system.

So far, he hasn’t seen improvement. He’s tired all the time, he said. But he was told that he’d get worse before he got better.

Finding the truth

Lyme disease has been mistaken with diseases other than ALS, and vice versa, said
Dr. Michael Zimring, director of Wilderness and Travel medicine at Mercy Medical Center in Baltimore. Most are neuromuscular in nature, such as multiple sclerosis, fibromyalgia and chronic fatigue syndrome.

"Initially, when you first get it, it’s difficult to diagnose," he said. "Some typical early symptoms are a rash at the site of the tick bite and flu-like symptoms."

Missing initial stages makes it more difficult to diagnose and easier to confuse with other diseases, he said. Later, the symptoms that show up could be arthritis, cognitive difficulties, facial paralysis, severe fatigue and others.

"Here’s the point - people should acquaint themselves with a good primary care physician who will find out what is going on," said Zimring, also co-author of "Healthy Travel: Don’t travel without it," written with Lisa Iannucci. "People run off to clinics. They run here and they run there. Stick with a good primary practice physician who will guide you. It’s that physician’s job to guide you when you present with symptoms."

Other than taking a physician’s advice, there are other ways that people are getting their health care information these days, said Dr. Kevin Yingling, chairman of the Department of Internal Medicine at the Joan C. Edwards School of Medicine at Marshall University. They turn to advocacy groups, institutions, proprietary sources, such as pharmaceutical companies, and physician advocacy groups.

"I would always believe that the best advice comes from your personal physician, though I realize there may be a breakdown in communication between the physician and patient," he said.

Other than that, just check the credibility of your source, he said. If it’s an advocacy group, make sure the information is reviewed for validity by some external source. And if it’s a pharmaceutical company, be aware that the information is probably true, but could be slanted.

"The biggest mistake I see is that they’ve gone to a proprietary Web site promoting a product or test, and it’s not sound medical advice," Yingling said. "We have to educate them and lead them toward an evidence-based medical approach."

For the most part, the Internet has been beneficial because patients walk into the doctor’s office armed with some background information and printouts. They ask what he thinks of something and whether or not it could help

"I look at it as one step beyond the brown bag concept, when you ask them to bring in all the medication they’re taking in a brown bag, or all the questions they have on a piece of paper," Yingling said. "Now, it’s ÔFind out what you want from the Internet, and bring it to the office.’ It empowers the patient to bring problems and concerns to the office to discuss them."

Be aggressive

Patients, as well as family members of patients have a duty to be aggressive on their own behalf, said Tom Bowen of Huntington, father of a 2-year-old boy who died of brain cancer in February. Bowen plans to take a job with St. Jude Children’s Research Hospital later this summer, and has been spending much of his time lately helping families of children with cancer learn to navigate the health care system.

Bureaucracy and paperwork can be especially frustrating, he said. The Bowens didn’t deal with any of that at St. Jude because costs are covered for families there. But at a hospital in Cincinnati, Tom Bowen was told by one person that his son probably had 15 minutes to live, and by another than he needed to immediately go downstairs to sign some papers before surgery.

"Bureaucracy - it’s like a monkey on your back you can’t shake," he said. "The health care system chokes the life out of those that survive with bureaucratic red tape."

Whatever or whomever you’re dealing with, never be too timid to speak up, he said.

Doctors are fantastically knowledgeable, he said. But they don’t know you as well as you know yourself, or your child like you do, he said. So follow your heart and get second opinions when you feel it’s necessary, he said.

The Bowens were told by one doctor that their youngest son, Ben, had the flu.

"We knew in our hearts something was really wrong, and the medical opinion we were given didn’t connect with what we knew of our son," he said. They had the choice of accepting that opinion, or taking him elsewhere.

"It’s hard to ask those questions," Bowen said. "You feel like you’re going over someone’s head and questioning authority, but you’re taking care of your family member. We got to spend more time with him as a result.

"We learned to ask, ask, ask. If you’re not clear, ask again to make sure you’re involved in every decision made and not just let the machine take off without you. You need to trust medical professionals, but not let that replace your role as a caregiver."

Dwane Foster advises always asking for a second diagnosis. At the same time, he says he’ll always feel fortunate.

"I’ve dealt with some very caring people in the medical field," he said.