A dozen men and women sit on chairs in a circle, feet planted firmly on the ground. As a young instructor guides them and the strains of "Allegheny Moon" and "Smoke Gets in Your Eyes" waft around the room, they stretch their arms with dumbbells and wrist weights. They stomp their feet and shout. They toss tennis balls to and fro. They open their mouths widely and swivel and pivot their heads.

For a good hour this goes on, and it's serious stuff. At any one time, more of the group members have their eyes closed than open. That helps them listen hard to directions and focus their muscle movements.

Then, when the group is exercised out, they adjourn for lunch, games, and conversation.
These exercisers are people living with Parkinson's disease, and they have trekked to the Parkinson Foundation of the Heartland offices for assistance with their bodies, minds, and emotions. The group, and many others at the foundation in Leawood, are proof positive of the value of a communal approach to a very personal illness.

Formed in 1989 in Kansas City, the Parkinson Foundation of the Heartland is a voluntary health service organization active throughout Missouri and Kansas. An official chapter of the National Parkinson Foundation, it is dedicated to raising awareness of Parkinson's disease, and providing education and support to patients, their families, and their care providers.

The foundation accomplishes these goals through services such as support groups, exercise and speech classes, and educational programs. It publishes a quarterly newsletter and organizes an annual symposium.

Its office in Leawood is operated by paid staff and volunteers every weekday from 9:00 a.m. to 5:00 p.m. On Tuesdays and Thursdays, all are welcome to drop in for a Wellness Class offering exercise, lunch, games, and fellowship.

Parkinson's disease is a progressive neurodegenerative brain disorder that results in loss of motor control and coordination.

Nerve cells use a brain chemical called dopamine to help control muscle movement. When 60 to 80 percent of the nerve cells that make dopamine are destroyed or damaged, the motor symptoms of Parkinson's disease appear. Although the disease progresses slowly in most people, it significantly affects quality of life.

In the United States, 60,000 new cases are diagnosed each year, adding to the one million people who already have Parkinson's disease.

No one knows what causes the disease, and at the present time, there is no cure.

After the diagnosis
Although people are stricken with Parkinson's disease at all ages, the norm is for a diagnosis when patients are in their 60s. No reliable blood test is available, so a clinical diagnosis is usually made, based on symptoms. In general, about 4 percent of the population has Parkinson's; of people 80 or older, about 10 percent have it.

Some people take their initial diagnosis to a movement disorder specialist (two are active in the metro). These physicians work with people who have Parkinson's disease and other tremor and movement disorders. Movement disorder specialists are neurologists who have one or two years of additional training in diagnosing and treating Parkinson's and other movement disorders.

People with a Parkinson's diagnosis deal with it in distinct, personal ways. They may go through a myriad of emotions, including denial, fright, disbelief, and depression.

But for all of them, a warm and welcoming resource is the Parkinson Foundation of the Heartland, whose staff understand the emotions and physical responses to a diagnosis. The board of directors members have, in one way or another, "been there." Many are people with Parkinson's or are close to people with Parkinson's.

Probably the most-utilized offering of the chapter is its Wellness Program, which includes the group from this morning.

"A lot of exercising goes on in this class, including exercises for handwriting and speech," said Amy Gaier, foundation director of education, outreach, and programs. "But the class also provides an opportunity for a community of people to gather. They talk before and after the exercise routines, and while they do, support happens.

Be part of the foundation
The Parkinson Foundation of the Heartland offers a wealth of assistance, in the form of:

• Support groups. Numerous support groups are active in Johnson County, some with specific missions, as those for families and caregivers of people with late-stage Parkinson's. Call the foundation for advice on the most appropriate group for you.
  
• Exercise groups. The foundation provides videotapes, exercise bands, and other tools for exercise groups geared to people with Parkinson's disease. There's even a boxing class for early-stage Parkinson's.
  
• Speech classes. The foundation co-sponsors periodic speech classes for people with Parkinson's disease as part of its wellness activities.
  
• Educational materials. At least 10 publications are available at no charge. Titles include "What You & Your Family Should Know"; "Practical Pointers for Parkinson's Disease"; "Medications"; "Fitness Counts"; "Caring & Coping"; "Speech & Swallowing"; "Mind, Mood & Memory"; "Nutrition Matters"; "Managing Advanced Parkinson's Disease"; and "Guide to Deep Brain Stimulation Therapy."
  
• Medication Assistance. The foundation provides monetary assistance to people with Parkinson's disease to help them defray the cost of their Parkinson medications. It also works closely with hospitals and doctors to help eligible patients receive relief assistance from pharmaceutical firms that manufacture or distribute Parkinson medications.
  
• Respite care assistance. The foundation provides cash assistance to people with Parkinson's disease and their families to pay for emergency respite care.
  
• Supply closet. The foundation maintains a supply closet with wheelchairs, bath chairs, commodes, walkers, Depends, glycerin swabs, big-grip utensils, and other aids for daily living. Parkinson patients and their families can borrow items indefinitely. Depending on availability, the foundation also loans power-lift chairs and power-wheel chairs and scooters.

The foundation underwrites these and many other benefits, and funds research about Parkinson's.

The Parkinson Care Series
The Parkinson Foundation of the Heartland is committed to providing up-to-date information on Parkinson's disease, its causes, treatments, and opportunities for maximum wellness. Educational services include:

The Symposium. A symposium is held each spring for people with Parkinson's, medical professionals, foundation members, and members of the community to learn about breakthroughs in the treatment and management of Parkinson's disease and its symptoms. For information, call 913-341-8828.

Information and Referral Center and Lending Library. The foundation maintains extensive information on matters pertinent to the elderly and to people with Parkinson's disease. The library contains several hundred books and videotapes for loan. The foundation's program director for direct services, Katie Fuchs, is available for in-person appointments or phone calls to answer questions and arrange services. Call 913-341-8828.

Newsletter. The foundation writes, publishes, and distributes the Parkinson Update quarterly. The Update is also available on the Web site.

Videos. The foundation distributes an award-winning video, "Motivating Moves for People with Parkinson's."
"A Parkinson Patient's Guide to Hospitalization," "A Guide to Choosing an Assisted Living Facility," and "A Guide to Choosing Long-Term Care"—available for free from the foundation.

Connect with the Parkinson Foundation today!
Go online, call, fax, or e-mail the Parkinson Foundation of the Heartland to request a packet of information, or stop by the office and browse in the lending library of books and tapes.

Amy Gaier speaks passionately about the role that the foundation can play in the lives of people with Parkinson's.

"It's so important to connect immediately with a support group and the foundation," Gaier said. "We have something for everyone, and will tailor our offerings to what people express as their needs. But one thing that everyone gets from coming here is affirmation that they are on the right path, and the knowledge that we'll be here if they need us."

Gaier notes that newly diagnosed persons sometimes visit the foundation's offices and then go on their way, living fairly manageable lives for as long as 20 years—and then appear again when the activities of daily living become just too challenging and help is clearly needed.

If you want to support the Parkinson Foundation's work, what can you do?

• Donate. Your dollars go to work to help people with Parkinson's in Johnson County and their families. Your contribution is tax deductible and can be spread out through use of a credit card. Donate in memory of a friend or loved one. Take advantage of businesses' matching gifts.
  
• Volunteer, especially for the foundation's special events, which include the BasketBall (set for March 31) and the Moving Day Walk (set for June 16).
  
• Attend foundation events.

Parkinson Foundation of the Heartland
8900 State Line Road, Suite 320
Leawood, KS 66206
913-341-8828
www.parkinsonheartland.org

So many stories

There are as many stories as there are foundation members. All are worth hearing!

Bud Hoeflicker, 89, is a member of the Tuesday/Thursday exercise circle. Diagnosed in 2005, Hoeflicker said he came to the foundation initially at the suggestion of his daughter, "to see how others were getting along," but he stayed and became one of the regulars.

Gene Hagel, 71, was diagnosed in 2002 and came to the foundation at the recommendation of his neurologist. He's been coming twice a week ever since, and considers himself the guy with highest seniority.

Hagel has a lot of mobility and is able to travel, but his Parkinson's disease trips him up in many ways— some subtle, some not so.

"I struggle sometimes to try to find the right word," Hagel said. "For a time, my arms wouldn't swing and my voice got very soft. Eating got harder; you know, you need dexterity to manage a taco! And in the beginning, I couldn't smile. But I've learned to work my facial muscles, and soon I'll be able to smile at my grandkids without even thinking about it!"

Hagel and his wife belong to two support groups, one geared mostly to caregivers. In those groups, Hagel said, people with Parkinson's feel safe to talk about intimate problems. But there's lots of fun to be had at the foundation, too.

"We go to the big gala every year and bring the whole family," Hagel said.

Early warning signs of Parkinson's

• Tremor or shaking. Have you noticed a slight shaking or tremor in your finger, thumb, hand, chin, or lip? Does your leg shake when you relax?
  
• Small handwriting. Has your handwriting gotten much smaller than it was in the past? Are the words crowded together?
  
• Loss of smell. Have you noticed that you no longer smell certain foods very well?
  
• Trouble sleeping. Do you thrash around in bed or kick and punch when you are deeply asleep? Have you fallen out of bed?
  
• Trouble moving or walking. Do you feel stiff in your body, arms, or legs? Have you noticed that your arms don't swing normally when you walk?
  
• Constipation. Do you have trouble moving your bowels without
  straining?
  
• A soft or low voice. Have other people noticed that your voice is very soft when you speak in a normal tone or that you sound hoarse?
  
• Masked face. Have you been told that you have a serious, depressed, or mad look, even when you are not in a bad mood?
  
• Dizziness and fainting. Do you notice that you often feel dizzy when you stand up from a chair?
  
• Stooping or hunching. Are you not standing as straight as you used to?

If you have more than one of these symptoms, talk to your doctor. Early diagnosis gives you the best chance for a longer, healthier life.

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