It Might Not Be Alzheimer's
By MARILYN SOLITS
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.
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
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
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.
Published: December 04, 2011
Issue: 2011 Philanthropy Issue