Neurological disorder can take control over victims

By Peggy Ussery
Published: June 3, 2009
It started with stiffness in her neck. Over time, Jane Murphy noticed her chin was hanging low to her chest.
Doctors put her on arthritis medicines and recommended heat treatment. The pain spread and she began using her hand to keep her head up straight. The symptoms spread from her neck to her eyelids and then to her face.
“I was on so much medicine, I wanted to sleep all the time,” Murphy said.
The ball of Tim Hornsby’s foot began to swell. He noticed his toe was falling asleep regularly. He began dragging his foot. Hornsby thought it might be related to an old back injury. Doctors ruled out stroke and Parkinson’s disease.
Today, the once active engineer uses a walker for support. His toes curl up under the constant muscle contraction. His legs lock up without warning, causing Hornsby to fall on more than one occasion — he even broke his nose once on a night stand.
“You lose a lot of dignity,” Hornsby said. “I’ve always been one that’s done anything, and to have to ask people to do things for you ...”
The pain near the front of Chrissi Brannon’s ears spread to her teeth. For five years she saw dentists, oral surgeons, neurologists and ear, nose and throat specialists. She had root canals on all her back teeth. There were doctors and others who thought the 31-year-old was drug-seeking. Her chin started to pucker out uncontrollably.
Brannon’s left shoulder began to hurt; then, her right shoulder. The pain, fatigue and depression consumed her. Last year, the wife and mother of two gave up a career she loved as a pharmaceutical representative.
“I was a go-getter,” Brannon said. “I worked all the time.”
Murphy, Hornsby and Brannon each have a neurological movement disorder called dystonia. It’s the third most common neurological disorder in the U.S., but most people have never heard of it.
Dystonia is in the same family of neurological disorders as Parkinson’s disease. While Parkinson’s eventually destroys its victim’s brain, dystonia takes the body. It’s a debilitating condition that, while not fatal, forces muscles into a constant and painful contraction, sometimes disabling patients. The muscle contraction is so intense it’s compared to 18 hours of working out. It may hit one area of the body — legs, arms, neck, face, eyes — or attack the entire body, known as generalized dystonia. It can even effect hearing and speech, and severe cases of dystonia in the neck or vocal cords can actually impair breathing.
Hornsby, who lives in Headland, attends support group meetings in Birmingham. But he, Murphy and Brannon — who both live in Newville — hope to get enough interest to establish a Wiregrass support group. They figure there are others locally also dealing with the condition.
“I just know there are so many people out there with pain,” Brannon said.
Why and how dystonia happens is unknown. There are theories. It could be genetic. It may come on after a trauma, especially a physical trauma. Some people may be predisposed to it. Stress can aggravate symptoms.
Some people have only mild symptoms, while others live in agony. There is no cure.
A common treatment for dystonia is botox injections given every few months to paralyze the muscles and stop the involuntary movements. Medications can help, and in severe cases deep brain stimulation surgery can relieve symptoms.
“I had problems and didn’t know what the problems were,” Hornsby said. “They weren’t consistent.”
Unlike many people who spend years trying to get a diagnosis, Hornsby received a diagnosis within only a few months of seeking help in 2006. However, he saw eight doctors first. Within a year of his diagnosis, his symptoms had spread from one foot to the other.
When he and his wife, Virginia, received the news, they turned to the Internet for information. What they read was disheartening.
“Emotions for me and Virginia went from rock bottom to everywhere,” Hornsby said.
He was able to walk his daughter, Rebecca, down the aisle when she got married, but he can’t get out and walk with his grandson. He’s able to keep his job with the Alabama Department of Transportation in Troy because Virginia works in the same office and drives them both. But he’s no longer able to do field work.
“I have to depend on people I trust to get out and do things work-related,” he said. “But I’ve got some good people.”
Murphy saw 21 doctors before her diagnosis in the 1980s at the age of 48. Now 70 years old, Murphy has lived with dystonia for 22 years.
“We went to doctor after doctor ...,” Murphy said. “Nobody had heard of my ailment.”
Murphy has three kinds of dystonia in her neck, eyes and face. Her facial dystonia has gone into remission. She uses a back support to help her sit up straight in church and wears dark glasses to protect her sensitive eyes.
Brannon was 31 when her symptoms first occurred in 2001. She was diagnosed in 2006. Her dystonia affects her neck, face, back and hands. The pain and the fatigue has caused her to miss a lot with her children, ages 12 and 3. But her husband, Tom, has been supportive.
“If I have a day that’s pain-free, it’s few and far between,” she said.
Brannon now worries about the numbness she’s starting to feel in her toes.
“It’s getting worse, I can tell ...,” she said. “I’m hoping for the best, hoping to keep mine under control. Mine is moving, and that’s scary.”
Brannon is not alone in her fear.
“There’s that little bit of uncertainty,” Hornsby said. “Where is it going next and when?”——————————-Want to know more?If you or someone you know is interested in starting a local dystonia support group, e-mail DothanDystoniaSupportGroup@gmail.com
Understanding DystoniaThis week is Dystonia Awareness Week. Alabama Gov. Bob Riley signed a proclamation to support raising awareness about the condition. Here is some information about the different forms of the condition from the Dystonia Medical Research Foundation:
Laryngeal dystonia/spasmodic dystonia - Affects muscles of the vocal cords, making it difficult to speak.
Blepharospasm - Affects the eyelids, causing them to blink uncontrollably or remain closed.
Cranial dystonia - Affects face, jaw and tongue. Causes grimacing, tongue protrusion and jaw closure or opening.
Cervical dystonia/spasmodic torticollis - Affects neck and shoulder muscles, turning the head to the side or forcing the head back or forward. A tremor may be present.
Hand dystonia/writer’s cramp - Causes fingers to curl and the hand and forearm to cramp. Occurs when a person attempts to use the hand for writing, playing a musical instrument or other activities.
Generalized dystonia - Affects many parts of the body simultaneously. Causes cramping and twisting in the feet, limbs and torso.

Nordic Walking Poles Are Helping Many with Balance and Stability Issues - Including Many of Our Recovering War Heroes

When a thank you letter arrived from The American Red Cross for the one-piece Nordic Walking Poles that were donated to Walter Reed Veterans Hospital by SkiWalking.com and The American Nordic Walking System it was one of hundreds of confirmations that one-piece Nordic Walking poles prove to be safer, lighter and much more durable than twist-locking adjustable length/telescoping/collapsible poles.

Glen Arbor, MI, April 15, 2009 ---- Nordic Walking instructor, running and ski coach, Pete Edwards, discovered five years ago that Nordic Walking Poles were not just for expert skiers deprived of snow, but doubled as an aid for those with balance and stability issues. He started volunteering to host free Nordic Walking Clinics at Multiple Sclerosis (MS), Parkinson's (PD) and Diabetes support group meetings. A couple years later he donated dozens of pairs of durable one-piece Nordic Walking poles to Walter Reed Veterans Hospital in Washington, DC. He has also shipped free Nordic Walking poles directly to injured soldiers returning from Iraq and Afghanistan after talking to their spouses and/or parents. Family members, doctors and physical therapists have been amazed by the improvement in posture, balance, stability and gate thanks to the use of Nordic Walking Poles in the correct lengths.For over 25 years Edwards has been coaching runners and skiers. His skiers have been ski walking and hill bounding with poles during the warmer months when snow could not be found.

After a knee injury ended his marathon running career, his Nordic Walking Poles saved the day – allowing Edwards to Nordic Walk and even Nordic Run (running with poles) pain free.Using the perfect length Nordic Walking Poles helps us to automatically walk with a super straight back - better walking posture is biomechanically a good thing. This improved walking posture when combined with the unique 4-Wheel-Drive type action of walking with poles radically reduces the stress to the shins, knees, hips and back. Nordic Walking is low impact and yet provides a highly effective workout - burning more calories and working more muscle groups than regular walking.Nordic Walking has been the fastest growing fitness activity in Europe for several years. Over seven million Europeans are walking with poles - in the city, in the country and up in the mountains. Walking with poles helps to burn more calories than regular walking, improves balance/stability, radically reduces the stress to the weight bearing joints and provides a workout for your upper body by engaging your arms and legs – a lot like cross country skiing.Nordic Walking’s winning combination of improved posture, a unique 4-Wheel-Drive type action and shock absorbing benefits are helping many individuals to walk comfortably again.

Nordic Walking Poles are helping individuals with balance issues, knee issues or new knees, hip issues or new hips, back issues (including those with rods in their back), weight issues, multiple sclerosis (MS), parkinson’s disease (PD), neuropathy, arthritis, bursitis, scoliosis, lumbar stenosis, fibromyalgia, post polio, osteoporosis, stroke recovery, cancer recovery and other limitations to walking. Nordic Walking poles are helping thousands of Americans get off the couch, successfully get outside, start walking safely and effectively launch much needed walking campaigns.Individuals that use canes and/or walkers often find that Nordic Walking Poles are much more comfortable and stable than their canes or walkers. Individuals that find pushing a shopping cart comfortable find that Nordic Walking poles provide even more support and much improved balance, stability and versatility. The feedback from amputees, individuals with head trauma and others with balance issues is consistent – the poles really do improve balance and stability.From a fitness standpoint, walking with the correct length poles and proper technique can burn up to 40% more calories than regular walking. Walking with Nordic Walking Poles can turbo charge any walking campaign.Real Nordic Walking Poles are equipped with comfortable fingerless glove type straps, durable metal tips (for use on trails, the beach, snow and ice) and special rubber tips/paws that are removable and designed for use on pavement and other hard surfaces. All poles from http://www.skiwalking.com/ and The American Nordic Walking System are also equipped with patented straps (patented by the Salomon Ski Company).Thanks to the efforts of Pete Edwards, SkiWalking.com and The American Nordic Walking System, individuals of All ages and All fitness levels, are safely unlocking the calorie burning and aerobic benefits of walking, hiking, trekking and running with poles. These durable one-piece poles prove to be safer, lighter and much more durable than cheap twist-locking adjustable length/telescoping/collapsible poles. Nordic Walking Poles from SkiWalking.com and The American Nordic Walking System also includes a free Nordic Walking DVD and there are a variety of exertion options to choose from regardless of age, balance and/or fitness level.

Residents see hope in stem cell work

By Jessica J. Burchard
The Winchester Star


--------------------------------------------------------------------------------

Winchester — The best option for Bonnie Justice’s early-onset Parkinson’s disease may be a two-part brain surgery and a dopamine receptor implant.

On Monday, the 48-year-old from Berryville will travel to Johns Hopkins Hospital in Baltimore for a consultation.

“Pretty much the only option for me is surgery,” she said in a telephone interview Thursday.

Justice was diagnosed with the disease nine years ago. It has no cure.

While she has few treatment options now, that may change.

On March 9, President Barack Obama signed an executive order to expand guidelines for embryonic stem cell research and provide federal funding.

The order gives federal officials 120 days to issue new guidelines that will make a far wider range of experiments eligible for federal funding.

Meanwhile, Justice continues to take prescription medication daily. The medicine upsets her stomach, though, and does not completely alleviate her symptoms.

Early-onset Parkinson’s is a degenerative neurological disease that causes the neurons in the brain to break down, particularly the dopamine-secreting cells. Dopamine is a neuro-transmitter that sends signals controlling bodily movements.

Symptoms include muscle stiffness and weakness, difficulty swallowing and speaking, and, in some cases, tremors on one side of the body.

Early-onset Parkinson’s is classified as any instance of the disease that is diagnosed in someone under 60.

Promising research

Mariecken Fowler, a neurologist at Winchester Medical Center specializing in the treatment of Alzheimer’s and Parkinson’s diseases, said no current medical treatment can stop or reverse the damage done by neurological diseases.

“It’s the death of the cells that is causing the problems,” she said.

Fowler said the brain is unable to produce replacement cells for those destroyed, and scar tissue covers the areas damaged by the diseases.

The scar tissue means that patients are unable to regain any of their bodily functions and will continue to deteriorate.

Such a breakdown is common in Parkinson’s, Alzheimer’s, multiple sclerosis, Huntington’s disease, and other neurological disorders.

Fowler and other neurologists are optimistic about the use of embryonic stem cell research to possibly reverse and cure these diseases.

Embryonic stem cells are prized in the scientific community because they can transform into any type of cell in the human body.

If scientists could control the metamorphosis, they might be able to create replacement tissues to treat a variety of diseases and conditions, from diabetes and Parkinson’s to paralysis caused by spinal cord injuries.

Fowler said scientists inject genetic material into the center of embryonic stem cells to dictate what the cells will eventually become. For example, DNA from a spinal cord would create a spinal cord cell.

The cells contain the same DNA as the person who receives them, which means the patient is not in danger of having her body reject the new cells, as can happen with other treatments.

Two sides to the issue

Although Justice considers brain surgery to be the most effective way to cure her Parkinson’s symptoms, she is optimistic about embryonic stem cell research.

“I think it will give a lot of people hope,” she said. “A lot of people have been frustrated by the lack of research being done.”

One such person is Rick Loughborough, who was diagnosed in November with amyotrophic lateral sclerosis — more commonly known as Lou Gehrig’s disease — by neurologist Paul Lyons at WMC.

“It pains me that we could have been eight years closer to a cure for my disease and others if we had had access to embryonic stem cell research,” he said in a phone interview Thursday from his home in Upperville.

During President George W. Bush’s two terms in office, his administration chose to curtail embryonic stem cell research, which limited federal funding to a small number of stem cell “lines,” or groups, that were obtained and stored before Aug. 9, 2001.

Loughborough, 44, has felt his body yielding to ALS since last summer. He is now unable to walk and uses an electric wheelchair to move around his home.

He can no longer work, and spends most of his time in his home, entertaining guests and watching television.

ALS is a progressive neurodegenerative disease that destroys nerve cells in the brain and spinal cord. This leads to a failure of the brain to control body movements.

The disease has no cure. People with ALS typically live for three to five years after being diagnosed.

Loughborough said people who have not personally experienced or seen someone with a debilitating neurological disease cannot fully understand the need for embryonic stem cell research.

“I think it’s very hard to have a moral high ground on this or other issues during a crisis situation,” he said. “I think if they’re living with the issue themselves, then they can see both sides of the issue.”

“A human life”

Some people consider research on embryonic stem cells to be a sin.

“I think [the research] demoralizes the people of the United States,” said Pastor Ken H. Smith of the Open Doors Baptist Church in Clear Brook. “We need to understand that the embryo is a human life.”

He and many other religious people say they believe the idea of using cells from a human embryo for scientific research goes against biblical teachings that argue life begins at conception.

Even the thought that embryonic stem cell research might save lives and end suffering does not sway Smith.

“If you have to take a life to save a life, what are you gaining?” he asked. “I don’t think the sacrificing of an unborn [child] is worth the adding of a few years of life for someone else.”

Fowler understands concerns about using embryonic stem cells for research, but takes a more scientific view of the research.

“I understand that there are a lot of definitions of when life begins,” she said. “These balls of cells are from fertility clinics where [the frozen embryos] were going to be destroyed.”

The embryos are left over from in vitro fertilization — a process in a laboratory in which an egg is fertilized by sperm outside of the womb. A woman usually has six to eight of her eggs removed and fertilized, but does not need all of them to become pregnant.

A variety of debates

Shenandoah University philosophy professor Barry Penn Hollar said the source of the embryos should be scrutinized in the stem cell research debate.

“This stem cell discussion raises a lot more discussion than what it looks like,” he said. “It raises issues of parenting, sexuality, and moral limits on how we reproduce.”

Despite the controversy surrounding the use of embryonic stem cells for medical research, Justice is optimistic.

“I’m excited at the promise of more research.”

The Associated Press contributed some information for this report.

...www.parkinsons.org
www.alsa.org
www.aan.com