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Patient, wife share their story of how brain disorder study changed their lives

ORLANDO, Fla. – A Central Florida doctor is conducting the first-ever clinical trial in Orlando for people with the brain disorder dementia with Lewy bodies.

“It’s probably the second-most common cause of dementia in the United States, behind Alzheimer’s disease,” Dr. Ira Goodman, who is leading the study, said.

Lewy body disease is an umbrella term for both Parkinson’s disease dementia and dementia with Lewy bodies.

In both diseases behavioral, cognitive, physical, and sleep problems are very similar, the Lewy Body Dementia Association said.

Jim Gourlay is a participant in one of  the two studies with two different drugs with Compass Research. Jim and his wife Dorothy sat down to discuss more of the disease.

Dorothy said Jim started to have symptoms in his mid 40s and then they symptoms slowed down and then picked back up in his 50s.

“It then got to be extremely noticeable, especially in his workplace. He wasn’t able to remember things that he had to do at work. And it was that type of work that you had to do a lot on the computer,” Dorothy said.

Jim used a computer as a part of his normal everyday work and things then became difficult.

She also noticed that he struggled to do his normal yard work.

The couple went to various experts to try to come up with a definitive diagnosis, to no avail. Then after Jim had pacemaker surgery in July 2015, his memory started to decline quickly.  Five months after the surgery, he started to exhibit more Parkinson’s type symptoms.

That is when the couple met with Dr. Ira Goodman the chief doctor leading the clinical trial at Compass Research in Orlando.

The study aims to help those with the disease.

The disease can first appear in three common forms, one being symptoms that can exhibit another brain disorder.

“It’s a disorder in which patients look like they have Parkinson’s disease,” Goodman said.

Patients can also exhibit symptoms that are similar to Alzheimer’s often leading it to become misdiagnosed.

“It’s very difficult especially early it’s estimated that about 25 percent people who have dementia with Lewy bodies are not diagnosed initially,” Goodman said.

However, the disease can look similar on diagnostic exams.

“Both dementia with Lewy bodies and Parkinson’s disease dementia are the same exact pathology, however, they’re in different areas of the brain and that’s why they effect the patients differently depending on where the Lewy bodies are in the brain.”

For Jim, he experiences visual hallucinations and tremors.

“It is liable to be anything like a shadow running. It’s not real of course and it’s not scary. You kind of laugh about it and go about your business,” Jim said.

The shaking has been something that Jim has noticed in his body and it is worse some days over others.

“People with dementia with Lewy bodies can fluctuate hour-by-hour as far as thinking, as far as alertness,” Goodman said.

Doctors say it is important for their patients to keep a record of the symptoms they are experiencing.

“We have patients do diaries and caregivers do diaries and that really helps us with this clinical diagnosis,” Goodman said.

Another common symptom that can present itself is the disruption in sleep causing vivid and sometimes violent dreams that patients can remember days or over even months after they occur.

The dreams can injure the patient’s spouse or caregiver.

“I smacked my wife one night,” Jim said.

However, he said that he has not had much trouble sleeping lately.

Despite his symptoms Jim hopes that he will gain a better understanding of his disease.

As a result of the trial, many things have improved for him, Dorothy said.

“He is OK with realizing that he needs help now, where as opposed to saying I just want to do it myself. He is realizing those capabilities,” she said.

“Coming here helps him get out. Going through the study, not just the study, but also the group that they have gets him out. Again it just those types of things are extremely important because there is that social aspect that he didn’t have for quite awhile,” Dorothy said.

Jim and Dorothy both emphasized the importance that support groups play for both the caregivers and the patient.

“The support group has been helpful. It has answered a few problems that I have had,” Jim said.

For Dorothy, the support group allows her to connect one-on-one with other caregivers.

“I think the support group is really good for a lot of caregivers because everybody is in a different spot with their person, whoever that might be, whether it be a spouse or a significant other,” she said.

In one of their recent group meetings they discussed someone who inspires them. As a caregiver, she went on to say that it is important for you to not lose sight of yourself and to have an outlet.

There is not cure for dementia with Lewy bodies but Jim and Dorothy remain hopeful that the trial aids in the diagnosing for future generations.

“If they can find a cure, that is nice,” Jim said.

For more information on the study, please visit: http://www.compassresearch.com/patients/current-studies/memory-loss/dementia

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