Sunday, April 25, 2004
For Pennsville resident Terry Davis, every day is a daily struggle, but she faces each anew with high hopes that her health and battle with a neurological disorder will continue to improve.
Davis, 47, is one of six patients with multiple sclerosis who is participating in a clinical research trial sponsored by the Drexel University College of Medicine.
And she lives a success story.
Living with Multiple Sclerosis
Davis recalls her first experience with MS came in college when she was a student at Glassboro State, now Rowan University.
Weakness developed on her right side and when doctors examined her it was treated as an orthopedic problem, since technologies at the time didn't avail doctors to the use of MRIs.
She began noticing her balance was off to the right and there was an increased clumsiness, "I was always dropping things," she recalled.
The MS went into remission for 20 years, then she began to notice blurred vision problems, facial numbness, short-term memory loss, incontinence, loss of sensation and cognitive changes.
"There's definitely a fatigue that comes with the disease that is overwhelming," she said.
Davis visited three different neurologists before receiving a diagnosis three years ago from Hahnemann Neurologist Dr. Robert Schwartzman, that she had MS.
"I was scared when I was first diagnosed, I didn't really know much about it," she said.
Davis researched the disease in effort to educate herself and became pro-active by forming a MS walk team at the school where she teaches, Valley Park Elementary in Pennsville Township, called "The Valley Park Vikings for Victory Over MS."
For about two years, daily living tasks had became personal challenges
and a wheelchair, walker and a leg brace have become necessary daily items
and a part of who she is.
"The doctors felt if they could stop the progression of the disease, they were hopeful that I could regain some functions," she said. "I knew I could be in charge of my body for this totally unpredictable disease."
Knowing there were potential risks involved, she still choose to take part in the study and was adamant on not being confined to a wheel chair for the rest of her life.
"It was a really hard decision to make, but I feel there is a reason for everything," she said.
On Sept. 15, 2003 Davis was admitted to Hahnemann University Hospital when she was in semi isolation for about a month and treatment began.
Unsure and Unknown: The Treatment Process
The treatment procedure requires the administration of high dosages of Cyclophosphamide, a chemotherapy drug. The high dosage completely surpresses the immune system so that almost all of the person's disease fighting immune cells are destroyed.
"This process totally destroys all the cells in the bone marrow with the exception of the stem cell," said Dr. Isadore Brodsky, Professor of Medicine and Director of Hematology and Medical Oncology at Hahnemann University Hospital, which is associated with Drexel University College of Medicine.
The body then regenerates a new auto-immune system from scratch, without the harmful triggers that cause the body to attack its own cells.
This procedure does not involve a bone marrow transplant, thus reducing the chances of infection and eliminating the need for long-term auto-immune drugs.
To be a candidate for the study, a major factor is to make sure the heart is healthy first and foremost. Careful evaluation of the heart and lungs are conducted to make sure there are no pulmonary problems and the kidneys are healthy.
Side effects of the treatment for some patients could include; complete loss of hair, nausea and diarrhea and there is a period of a few days when the body has no bone marrow and no blood count so the person is more susceptible to viral infections.
"The patients we are accepting have already failed three therapies and are far advanced with the MS," Brodsky said. "Obviously if this continues to hold the way it is holding we are going to continue treating people with this method up front, but we have to wait and see what happens a year or so down the road."
Brodsky said early on that she had "remarkably improved."
"It's surprising, but it is still very early," he said. "It's definitely
still too early to say what the cure rate will be. But we are encouraged
by what's happened to her auto immune system."
Since then, she has been on medical leave from work, recuperating from this new and aggressive treatment for MS.
"Regardless of the outcome, I know that I will never be the same person again," Davis said. "I have been able to do something to open up the door for treatment alternatives for others with MS."
First Steps for the
After months of treatment, several exacerbations, battling with side effects and being confined to a wheelchair, then using a walker, Davis took her first unaided step in March, only six months after starting this new treatment process.
Here is an excerpt from her diary on March 4, Ash Wednesday, -- the day she took her first steps from the fifth floor of the hospital to the third floor unassisted, something she hadn't be able to do in over a year:
"I am feeling stronger daily but never in my deepest recesses did I think I would walk unassisted ... I am completely overwhelmed with emotion. I look at myself walking and cannot believe it is me standing erect with one foot in front of another, my trunk strong enough to keep my balance, although my foot strikes the floor like I am killing bugs. Nevertheless I feel like I am walking on clouds. There were tears everywhere today from me, staff members, family and friends, but it was the look on Dr. Brodsky's face when he came over on a moment's notice that was most touching. In his kind eyes I saw a look I will never forget. His look confirmed what I had suspected, that he felt I would never use my right leg again, he told me so when we visited after he had watched me walk. He also told me it was one of his happiest moments in all the years he had practiced medicine. I truly thank God for him and Dr. Schwartzman. There are no words for adequately expressing my gratitude, not just for improving the quality of my life, but for saving my life."
A Continuing Struggle and Learning Along
Now an outpatient at McGee Rehab, she continues to visit with doctors and attend therapy sessions weekly.
Davis said she always believed she would walk again but she thought at best she would be walking with a cane, she never expected full use without an assistance device.
Overall she explained the treatment was rough, but she feels she tolerated it well and it is her sincere belief that she will beat the disease with this treatment.
She still suffers from loss of appetite, nausea and vomiting. Her immune system is very low and she has to be revaccinated for all the childhood diseases. Her blood counts have increased and she continues to attend therapy every day.
She has a tremor in her right hand, slight vision problems and occasional weakness, but her hair has grown back.
A nutritionist has helped with devising a regiment for her weight, medication and supplements to stimulate weight gain. Thus far she gained 15 pounds and now weighs in at 105 pounds.
Davis said she has no regrets about her life-altering and challenging experiences. She continues to live with the fact that the long-term results may not be as positive, but she reaped benefits she never thought she would see.
"I never questioned why I had MS because everything happens for a reason," she said.
Her reason, is to share her experiences with others and raise public awareness about MS. In fact she has made it her personal goal is to keep this issue in the forefront of the public.
"Words can't express the feelings I have with every step," she said. "It's a personal victory for me, but also a step towards a cure."
Even more so, this experience has helped her realize that MS has been a great teacher. Emotionally and mentally this experience has made her a stronger person.
She said it taught her that it is not a weakness to ask for help and depend on others.
"It has helped me put my priorities in order and have the faith to stop trying to control what I can't control," she said. "MS has shown me that I am stronger than I thought both physically and emotionally."
But most importantly, Davis said her MS experience from the beginning until now and continuing each day has taught her to have patience with not only herself but others.
"It was a lot more than I ever dared to expect," Davis said. "To me
it is a miracle -- it's just a miracle."
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