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It Might Not Be Alzheimer's

    The new Starz television series “Boss,” featuresKelsey Grammer portraying the Mayor of Chicago who attempts to hide a mysterious degenerative brain disorder that mimics early dementia. In real life there are many conditions that can be mistaken for dementia and Alzheimer’s like vascular dementia and Lewy body dementia. Thyroid problems, nutritional deficiencies, and even depression can sometimes trigger symptoms of dementia. Other disorders include Huntington’s disease, Parkinson’s disease, and Creutzfeldt-Jakob disease. 
      A little-known, treatable neurological condition can also be mistaken for dementia in some cases—normal pressure hydrocephalus (NPH).  Experts estimate that 375,000 people in the U.S., or five percent of all those with some form of dementia may have NPH.
    NPH has three primary symptoms: changes in a person’s gait and difficulty walking, shuffling of the feet and unsteadiness; cognitive decline and confusion, forgetfulness, apathy; and incontinence. Sudden falls may occur early in the illness. As many of these symptoms are common in the elderly, NPH is often misdiagnosed.    
    “Many patients can suffer for years with NPH without knowing it because NPH closely resembles much better known diseases and conditions. There is even low awareness of NPH in the medical community so patients and their families often struggle to get a diagnosis,” says Gail Rosseau, MD, a neurosurgeon from NorthShore University Health System.

The Road Back to Health

    Demetria Giannisis began a long journey of discovery and self-sacrifice in her role as primary caregiver and quest to find a solution to her father’s condition. At 49, living on her own in a condo on Lake Shore Drive and running a non-profit consulting group for climate change services, she would spend four years from March of 2006 to 2010 looking for a diagnosis for her dad while draining her savings and other resources.
    Eleftherios “El” Giannisis had been strong and active his entire life, spending fifty years as a merchant marine and industrial electrician transporting goods all over the world. He retired to a houseboat in Florida but a hurricane tore it off the pier. He came to stay with Demetria in Chicago for a time.
    Then one night in February of 2006 he suffered a stroke as he was coming up the elevator. He had heart surgery and seemingly recovered well. He improved but then rapidly declined into dementia, incontinence, and a loss of short term memory and the ability to walk.
    Demetria sought solutions from family doctors and specialists while she tried to manage her father’s condition, relying on friends for support and the Center for Jewish Elderly which provides adult day care service. “It was a very difficult time,” she says. There were no answers.
    Finally, in March of 2010 a CT scan was performed at NorthShore University HealthSystem which  revealed enlarged ventricles in El’s brain due to an excess buildup of cerebrospinal fluid. Additional tests confirmed that he was a good candidate for treatment.
    Neurosurgeon Dr. Gail Rosseau performed El’s surgery which involved implanting a shunt—a thin and hollow tube—under the patient’s scalp to drain excess fluid from the brain to the abdomen where it is absorbed safely back into the bloodstream. The shunt may need adjustment periodically after the surgery because removing too much or too little fluid can cause symptoms to reemerge. The new technology allows doctors to painlessly adjust settings in a doctor’s office using a magnetic device held over the scalp. She says the new shunts have ten different valve settings.  
   After recovery, El went from his wheelchair to the gym where he now lifts weights and works out on the rowing machine. He’s walking normally, his cognition has greatly improved and the incontinence has improved by 98%, according to his daughter. He loves to read and watch the news and participates in activities at the senior center. His boat is docked at a Chicago marina and he hopes to be sailing again. “It was a remarkable improvement. People meet him and can’t see anything wrong,” says Demetria.
    Dr. Rosseau cites a 90 percent chance of success after the procedure in the well-selected patient. “Typically over a three year period, we will evaluate about 250 people,” she says. “That number eventually gets narrowed down to about 70 patients who get the procedure.”

 A New Perspective

As a caregiver Demetria says she learned a lot about herself and relating to someone with cognitive difficulties..........  ....“I’m much better. I’m happy. It was difficult but you also learn about yourself and resilience, not just coping. You form a relationship with a person who is altered. You have to relate to who is there. For me it was balancing who he was in the present and not giving up. You have to communicate very differently; you need to focus the discussion with no distractions. You don’t want to infantilize,” she says.
    “We have so many aging people. We have overwhelmed the caregivers and nurses. You cannot fall into a pattern where the person doesn’t need stimulation. We can get into their frames of reference, sound, sensory experience, touch, taste, and recalibrate how loud sounds are to them. Things like aquariums and gardens are calming. We can find building blocks to help caregivers relate,” says Demetria.
    For more information about NPH, visit www.LifeNPH.com.

Published: December 04, 2011
Issue: 2011 Philanthropy Issue