Some years ago, 72-year-old Carbondale resident, Jack Hippensteel Sr., was at his son's wedding when his daughter came up to him and asked, "Dad, aren't you happy?"

He answered, "Of course I am!"

"Then why aren't you smiling?" she asked.

Hippensteel says that was the first time he realized something might be wrong.

The National Parkinson Foundation estimates that four to six million people around the world suffer from Parkinson's disease (PD).

Parkinson's was first described by Dr. James Parkinson in a book published in 1817, entitled 'An Essay on the Shaking Palsy'. It is a disease that originates from the gradual loss of specific brain cells due to an unknown reason. PD belongs to a group of conditions called motor system disorders and is a progressive illness, meaning it gets worse over the time.

Samineh Krosrowshahi, M.D., a neurologist, at SI Neurology & Sleep Medicine started her practice about a year and a half ago in Southern Illinois and looks after approximately 10 to 15 PD patients today. "People with this disease have difficulty with speech, gait, coordination and speed of body movements," Krosrowshahi says. "They also have shaking of one or both hands mainly while resting. They walk with "baby steps" and they lose expression of their face."

Hippensteel's loss of facial expression, resulted in a poker or masked face. Later, he would learn this was one of the symptoms of PD and was called masking or hypomimia, which results from rigidity and slowness of the facial muscles, making a person always look sad.

Losing your facial expression can be hard on anyone. Robert Kiriakos, 71, founder of the Southern Illinois Parkinson Support Group (SIPSG) recalls his granddaughter saying, "What's wrong with grandpa? He doesn't smile anymore."

It took several months and visits to many doctors, before a diagnosis of PD, was confirmed, Kiriakos says.

Prone to almost falling, Kiriakos sees his PD doctor twice a year. His doctor reviews the efficacy of his drugs and adjusts his dosage. "I take about 20 odd pills a day out of which 12 are prescriptive medications," he says. "If I don't do that my symptoms begin to manifest."

It was a bit different in fellow Parkinson's patient, John Corker's case. Some years back, when Corker, 75, would get up he'd feel dizzy and lightheaded. He found out he needed a pacemaker. "That helped but didn't help with the tremors," he says. "In addition, my handwriting was going to hell and I was having coordination issues - as a result of which I fell several times."

He began to experience a feeling of claustrophobia when going to church and shuffling in line

after the service for coffee and cookies. In September 2003, Corker was finally diagnosed with PD, by Dr. Fakhre Alam, neurologist at Southern Illinois Neurology in Carbondale.

Symptoms are never the same for everyone

Often several types of medical professionals might be involved with the treatment and care of those with PD. These include a geriatric medicine specialist, a neurological surgeon / neurosurgeon, a neurologist, a psychiatrist, a psychologist and a speech-language pathologist.

Statistics show that the disease affects almost one percent of the population over age 60; with men 1.5 times more likely to be affected than women. The National Parkinson Foundation reports that 60,000 new cases are diagnosed each year in the U.S. alone, adding to the 1.5 million Americans who currently have PD. While the condition usually develops after age 60, approximately 15 percent of those diagnosed are under 50.

Abraham Lieberman, MD and Marcia McCall in the book, "100 Questions and Answers about Parkinson Disease" reveal that not everybody with PD has the same symptoms.

There are a hundred symptoms related to PD, which can affect quality of life, they say. These include trembling of hands, arms, legs, jaw and face; stiffness of the arms, legs and trunk; slowness of movement; poor balance and coordination; trouble walking, talking or doing simple tasks; problems such as depression, sleep problems or trouble chewing, swallowing or speaking.

According to Lieberman and McCall, softness of voice, a secondary symptom of PD, results from rigidity and slowness of movement of the muscles of the pharynx, larynx, and vocal cords, and the muscles of respiration.

Hippensteel who has difficulty with speech, says he has taught his grandkids that he cannot talk on the phone for more than three questions at a time, because of his PD.

In addition to speech, Hippensteel also struggles with social graces on a daily basis. "Drooling has been such a problem for me," he says. "It falls on the grandkids, on legal documents, just about everywhere! When I was elected as the President of the Lion's Club, I got up on the podium and said, "If you want me to be your President, you have to accept my drooling!""

Experts say drooling results from difficulty swallowing and while it can be annoying and even embarrassing, it can also be hazardous, as there is always the risk of swallowing saliva into your lungs resulting in pneumonia. Hippensteel says he takes a Botox shot in his saliva glands to control his excessive saliva or drooling, and it seems to be helping his problem.

"You have to accept it and adjust," Hippensteel says. "I have a very understanding wife. I want to be independent, so she doesn't help me unless I fail. She lets me try first - it might take me a while, but I can do it."

Another side effect of PD is its ability to harm thinking, learning and other cognitive abilities. Corker readily admits that it takes a bit for him to process what another person is saying. "Everything is more in slow motion," he says.

"Because of my coordination issues, my driving is poor," Corker says. "So I am very cautious when on the road. I don't like driving in the rain or at night. However my driving seems to improve when I switch medications."

Since he only has PD and does not have other diseases like diabetes or blood pressure, Corker says he feels pretty fit. "I haven't fallen in two years," he says. "I think my coordination has improved with all the medication."

No definitive diagnostic test

"Unfortunately there is no definitive test that diagnoses PD," Kiriakos says. "The only definitive test is an autopsy!"

The Winter 2007 issue of the Parkinson Report, the official journal of the National Parkinson Foundation, reports the incidence of misdiagnosis in PD is high. Although there are no reliable scientific studies on this subject, it has been estimated that 25 percent or more of patients being treated for PD may not even have it. Even more troubling is that there are likely tens of thousands or more patients in the United States who are suffering without a diagnosis.

"Diagnosis of a typical PD which is called "Idiopathic" Parkinson disease is not difficult," Krosrowshahi says. "However PD doesn't leave any track to be found on routine imaging studies of the brain such as CAT scan or MRI. Also there is no blood work to confirm or exclude the diagnosis. The disease is diagnosed solely based on clinical presentation."

"There are some imaging investigations of the brain such as PET or SPECT, using specific radioactive tracers to diagnose the disease which is not available as routine tests and is not covered by insurance companies," Krosrowshahi says. "These are only done on a research basis, however."

In quest of a cure

Impatient with the slow progress in developing new drugs for Parkinson's, people like actor, Michael J. Fox and retired boxer and former three-time World Heavyweight Champion, Mohammed Ali, put a public face on the disease. They created their own foundations that have raised millions of dollars for Parkinson's research aimed at finding a cure.

Statistics indicate that the National Institutes of Health spend $200 million a year on Parkinson's research. As of December 2006, the Michael J. Fox Foundation for Parkinson's Research has funded over $90 million in research, either directly or through partnerships. Even the National Parkinson Foundation awarded over $9 million for Parkinson research for the year 2006-2007.

Despite all of this and more, a cure is yet to be found for the disease. Experts say before a cure is found for Parkinson's, its cause must first be known. But scientists still don't know what causes the disease.

"The medications used for Parkinson's patients only help to improve the symptoms and quality of life for patients and their caregivers," Krosrowshahi says. No drug is available to slow the progress of PD as yet.

Experts say that even the mainstay drug - levodopa - is over 40 years old, and merely addresses the symptoms of Parkinson's. Others that help include dopamine agonists like Mirapex(r) and Requip(r), which alleviate and improve symptoms.

Recently, the FDA approved the first transdermal (skin) patch designed to treat the symptoms of early Parkinson's. "The medication is called Neupro(r), the generic name is Rotigotine," Krosrowshahi says. "This is an advantage for patients who are on too many oral pills. All they have to do stick the patch to their skin and keep it on for 24 hours."

While Mayo Clinic experts say there's no evidence that the Neupro(r) patch is more effective than oral dopamine agonists, such as pramipexole (Mirapex(r)) and ropinirole hydrochloride (Requip(r)), in managing the symptoms of PD; they do note that it does have the convenience of having to be applied just once a day, coupled with a faster dose escalation period.

In the end, Krosrowshahi believes knowledge is power. "Try to educate yourself about your illness," she says. "This helps you to better understand and cope with the course of the disease down the road."

Starting a local support group

About 10 years ago, Rodger J. Elble, M.D., Ph.D., watched Carbondale resident, Robert Kiriakos, walk down the hallway towards his office and gave him an instant diagnosis before they had even been formally introduced. "You have Parkinson's disease," he said. There was no doubt in his mind whatsoever.

Elble a much revered movement disorders, gait disturbances, tremor, and Parkinson disease specialist is director, of the Parkinson Disease and Movement Disorders Center, at the SIU School of Medicine in Springfield.

Kiriakos was just relieved to finally know what he was suffering from. "I was tired of having different diagnoses," he says. "Most doctors were telling me it could be this or it could be that. Finally here was a neurologist in Springfield who could make a positive diagnosis."

When his wife, Charlotte Kiriakos, heard Elble's words, she pretty much knew what to expect. She had had an uncle with Parkinson's and had seen how devastating a toll it could take.

After five years of coping on his own with PD, Robert Kiriakos decided it was time to start a support group. He was sure there were many people in Southern Illinois, just like him, who probably needed some kind of peer support.

Deciding to start a local support group, Robert and Charlotte Kiriakos brought Elble to Carbondale from Springfield, to give a talk on Parkinson's disease. A large crowd turned out to hear the expert speak. And that was how The Southern Illinois Parkinson Support Group (SIPSG) came to be.

Beginning with a mailing list of 75 members located all over Southern Illinois, the Kiriakos got Southern Illinois Healthcare to provide them with free space to host monthly meetings.

Today their once-a-month meetings are lively affairs, packed to the gills, with anywhere between 35 to 50 people showing up. Members find plenty of support, lifestyle education, health and medical information while attending the free SIPSG meetings.

At a recent group meeting, this writer attended, Dr. Ryan Hess, chiropractor at Hess Chiropractic gave a guest lecture on alternative therapies. Hess spoke at length about the benefits of following an exercise program combined with EDTA or iron chelation therapies, liver detoxification, physical or massage therapy, and osteopathic or chiropractic therapy.

Once the guest lecture is over, the bonding begins. New members introduce themselves, old members speak about new treatments they are trying out, what is effective and what isn't, questions are raised, and frustrations expelled. With the average age range being 60 plus, a bunch of old people jokes are often exchanged. It seems this group has a great sense of humor.

Robert Kiriakos for his part is determined not to go down with the disease. "It's important to accept and adjust to the situation at hand," he says. "Activity keeps me going. Having a spouse that cares is also important to me. My wife, Charlotte, doesn't let me vegetate. She keeps me on my toes!"

"Parkinson's will get us all one of these days," Robert Kiriakos says. "But we're not going to go easy. We're going to go kicking and screaming."

How to join

The Southern Illinois Parkinson Support Group is open to those with PD, their caregivers or those who are otherwise involved with or know someone who is suffering from this yet to be cured disease.

Meetings are held on the first Wednesday of the month, from 1-3 pm in the conference rooms of Southern Illinois Healthcare Corporate headquarters, located at the southeast corner of the back of the Carbondale University Mall.

The next two meetings are scheduled for March 5 and April 2. If you want to attend, contact Robert Kiriakos, at 618-549-3360 or email bknck@midwest.net for more information.

Fundraiser: Second annual Parkinson hanging flower baskets sale

Gorgeous in-bloom flowers grown locally by McNitt Nursery on sale Saturday, April 26 from 8 a.m. to 3 p.m. at the Carbondale Town Square Pavilion, next door to the Lions Club Pancake Breakfast tent.

Members of the Southern Illinois Parkinson Support Group (SIPSG) will be happy to write up your advance orders. Price is $15 each with all net proceeds being donated to Parkinson's research centers in Springfield and St. Louis.

Call Tom Hippensteel at 618-684-4282 for more information.

Movement disorders specialists near Southern Illinois

Even though Southern Illinois has seven valued neurologists in the region, a large number of patients with Parkinson's disease choose to out-migrate to the bigger cities and facilities when it comes to treatment of the disease.

Samineh Krosrowshahi, M.D., neurologist, at SI Neurology & Sleep Medicine, says this could be due to many reasons. If patients are seeking surgical options for treatment of PD such as placing a DBS (deep brain stimulator) which is performed by a neurosurgeon, they may choose to out-migrate.

Sometimes a patient may have an atypical presentation and/or be unresponsive to anti-Parkinsonian medications. "In these situations we might be dealing with another category of movement disorders called Parkinson-Plus disorders," Krosrowshahi says. "Usually we refer these patients to movement specialists who are neurologists specializing in movement disorders. Unfortunately there is no satisfactory treatment available for those patients and the reason for referral is confirmation of the diagnosis."

Since PD is a progressive illness due to continuous loss and degeneration of the neurons, after several years patients may enter a stage of the disease which can be very disabling. "In this stage the treatment of the disease becomes state of the art, which can be provided by the patient's primary neurologist or a movement specialist," Krosrowshahi says.

For a list of prominent movement disorders specialists near Southern Illinois and local neurologists in the area, visit www.thesouthern.com/neurologists.