Here’s another article from a local newspaper in Indiana about a couple coping with Lewy body dementia (LBD). The article features a two-minute video with Mary Milberger, the caregiver/spouse. The article notes: “From 2012 until November 2016, Tom [Milberger] was prescribed various medications from various doctors trying to help cure his symptoms of muscle freezing and loss of words. Yet, the medications were only fueling the disease. The medications were causing high levels of paranoia, on top of his already mounting symptoms.” Based on these problems, Mary came up with the LBD diagnosis.
Robin
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Learning to live with Lewy
One disease alters life for local couple
By Tilly Marlatt
Times Sentinel (Zionsville, Indiana)
Jun 28, 2017
His hand visibly shakes as he struggles to take a sip from his glass of tea. Removing his glasses takes longer than normal. His bottom lip quivers as he struggles to find words. At the age of 71, tremors may be written off as a sign of old age, but for Tom Milberger of Zionsville they mean much more.
Tremors are just one symptom of Lewy Body Dementia. Hallucinations, loss of facial expressions, falling, and a lack of self-control are all other symptoms he has experienced since November 2016 when he was officially diagnosed with Lewy Body Dementia.
Milberger’s tremors are visible, but they are simply outward disguises of his real struggle. Lewy Body Dementia is similar to Alzheimer’s, but varies in the way that it impacts the whole brain, not just one part.
Milberger’s joking mannerism and broad smile doesn’t tell the full story of who he is or who he was. Milberger spent 20 years in the U.S. Army before becoming a project manager with T-Mobile. He became the first person to retire from the company in 2008, prior to the onset of LBD.
“I’m really good at giving hand shakes,” he jokes. With constant tremors caused by the Lewy Body Dementia, or LBD as it is often referenced, giving a handshake seems to be one of his few normal gestures remaining.
Most nursing homes throughout the state of Indiana will not accept a person with LBD.
Luckily, Tom Milberger has a dedicated caretaker by his side, his wife of 37 years, Mary.
She sits at their dinning room table with her iPad, and a yellow folder, overflowing with pamphlets, charts, and other resource guides for becoming educated on LBD. The disease is widely undiagnosed. Tom was undiagnosed at the onset, but his wife knew there was more going on. His early symptoms originated back in 2012, but Tom’s doctor failed to diagnose him.
“It’s very important that they [LBD patients] do get told this diagnosis, and not be labeled,” Mary Milberger said.
From 2012 until November 2016, Tom was prescribed various medications from various doctors trying to help cure his symptoms of muscle freezing and loss of words. Yet, the medications were only fueling the disease. The medications were causing high levels of paranoia, on top of his already mounting symptoms.
“He was hiding his wallet in his pillowcase at night,” Mary Milberger said. “That’s when I spent many nights on the wonderful iPad studying different symptoms. Only then did I realize he had every symptom of Lewy Body Dementia.”
The Milbergers then went to meet with Dr. Jared Brosch at the Indiana University School of Medicine. After meeting with Dr. Brosch, he told Mary Milberger that her “arm chair diagnosis was right,” as Milberger recounts. LBD patients can never have a definitive diagnosis. Only during autopsy can it be confirmed. Dr. Brosch is leading a study on patients with LBD, in which Tom Milberger is enrolled.