For more than two years Tamara Real and her husband, Carl Rinne, searched for reasons why Carl, a once vibrant man, was forgetful, had dizzy spells and was no longer interested in normal social activities.
Rinne was eventually diagnosed with Lewy Body Dementia (LBD) — a brain disease that impairs thinking and mobility. Unfortunately, knowing the cause of her former U-M professor husband’s decline didn’t bring Tamara Real much relief or understanding. Although LBD accounts for about 20 percent of all dementia cases in the United States, Real discovered that few people know anything about it.
“It’s very hard when no one understands what you’re going through,” she said.
Real started the first LBD support group in Michigan in 2012 to connect with others dealing with the same issues.
Lewy Body Dementia gets its name from the doctor, Frederick Lewy, who discovered a small accumulation of proteins, known as Lewy bodies, in neurons in the brain.
It often takes a while to get a diagnosis, in part because many people, including healthcare professionals, are unfamiliar with the disease. Additionally, LBD can present like Parkinson’s disease, which also features Lewy bodies, or Alzheimer’s disease. A correct diagnosis is critical because some of the medications that can help the other diseases can negatively affect someone with LBD.
“It may lead to confusion or fear on the part of families if what they’re experiencing doesn’t seem to fit what they were told their loved one has,” says Henry Paulson, M.D., Ph.D., neurologist and director of the Michigan Alzheimer’s Disease Center. “LBD is a unique disease.”
Now, two years after the death of her beloved husband, Real has partnered with the Michigan Alzheimer’s Disease Center on the Rinne Lewy Body Dementia Initiative to support people in Michigan with the disease and their care partners, educate healthcare professionals about LBD, and create awareness of this particular form of dementia among the general public.
Paulson says public and clinician awareness is still lacking.
“Prior to Susan Schneider Williams’ announcement of Robin Williams’ diagnosis, no one had publicly dealt with this disease,” Real says. “I was just beside myself trying to figure out what was going on with the man I loved.”
Real’s one original support group is now two: one for caregivers and one for those diagnosed with LBD, and there are two more across Michigan. The Rinne initiative will also include expanding support for the groups statewide.
“We’re so pleased to be able to honor Carl’s memory with this new awareness initiative,” Paulson says, “and really appreciative of Tamara Real’s vision in making this happen. I can’t think of a better place to launch this initiative, given the strengths we have in research and clinical work.”
Take the next step:
- Learn more about the Carl Rinne Lewy Body Dementia Support, Education and Awareness Fund through the Michigan Alzheimer’s Disease Center.
- Read MADC’s information sheet about dementia with Lewy bodies.
- Visit the Lewy Body Dementia Association website.
- Learn more about the support groups that meet the second Tuesday of each month by calling the MADC at 734-936-8803.
The Michigan Alzheimer’s Disease Center (MADC), established at the University of Michigan Health System within the Department of Neurology, aims to conduct and promote research on Alzheimer’s disease and related disorders; ensure state-of-the-art care for individuals experiencing cognitive impairment or dementia; and enhance the public’s and health professionals’ understanding of dementia through education and outreach efforts.