Glen Ellyn man promotes awareness through tremor support group

A family illness, a misdiagnosis and a desire to help led a Glen Ellyn man to his role serving others.

Doug Ward looks back on the many years that his mother's medical condition was considered just something for the family to accept.

"She had a really difficult time with hand tremors," said Ward. "It was very pronounced. She lived to be 94, but for the last 40-50 years of her life she had tremors that were difficult to control.

"They would say, 'Oh, well. That's what happens to old people,'" recalled Ward.

It wasn't until she was 90 years old, that she began to get proper treatment. A move and change in doctors led to a medical breakthrough.

"They (her former doctors) were treating her as though she had Parkinson's," said Ward.

It turned out that his mother had essential tremor, a neurological disorder that is very common - and often inherited.

"She got the right medicine," said Ward.

It was about that time that Ward began to notice that he was exhibiting some of the same symptoms.

"I made an appointment with a neurologist," Ward said. "Sure enough, the doctor said, 'You have essential tremor.'"

It is a condition that can cause the uncontrollable shaking of the limbs or head. There are estimated to be as many as 10 million people diagnosed with essential tremor in the United States, affecting as many as one in 5 people over the age of 65. The genetic mutation that causes essential tremor has been known to run in families, and there are now diagnostic tests to prevent misdiagnosis of the condition - often confused with Parkinson's disease.

"I have a hunch that I've had this problem all of my life," Ward said. "Looking back, academically I was an excellent student, but I always had a difficult time writing."

One of the tests to diagnose essential tremor is to draw a spiral - something Ward could never do. After watching his own mother suffer for years, Ward had his own experience with a lack of awareness about essential tremor when a health issue caused him to reside temporarily in an extended care facility.

"It said on my chart that I had essential tremor. They had never heard of it. I could not feed myself because I was off my medication," Ward said. "I had my wife Ruthann bring brochures over. Here I was, educating the occupation therapists and physical therapists as to what essential tremor was."

Ward saw that there was a need to inform people about the condition.

"I heard that the International Essential Tremor Foundation (IETF) was looking for people to head support groups," he said. "I had the time to do it. I had enough background. In a sense, this was something that I could do for my mother. I made the call.

"I didn't know what it would lead to. I didn't know if anyone would show up," he added.

The group meets regularly at the Glen Ellyn Public Library, and Ward estimates that over the last 3 years he has had at least 40-50 members attend. Ward invites myriad experts to come and speak to the group to offer solutions and share personal experiences. During these sessions, he has heard some heartbreaking stories.

"The biggest concern are those who withdraw from society because of the tremors," Ward said. "They spill things. They drop things. People with tremors have trouble signing their own name or writing. People end up staring at them. Some people have lost their jobs because of the tremors."

The right treatment can make a world of difference.

"The support group keeps people up to date. There are many new ways to treat essential tremor," said Ward, who knows that he has helped others through his involvement.

"I get testimonials. Every month I get a letter saying thank you. That makes it all worthwhile," said Ward.

• For details, visit the International Essential Tremor Foundation Web site at essentialtremor.org. For information on the Glen Ellyn support group, call Doug Ward at (630) 790-1342.