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it. It would have been except instead of enjoy- Houston, Vice Chair of Methodist Hospital Semantic dementia (SD)
ing his family on the lake and barbequing up Neurology Service, Elected Director of De- People with early semantic dementia usu-
a storm, instead he retreated into the house mentia Clinic, UTHealth-Houston and Di-
with blinds and curtains drawn. When he rector Neuropsychiatry and Behavioral ally complain of difficulty coming up with
spoke with his high school aged daughter on Neurology Fellowship. the word or name for something. Words that
the phone she thought his slurred speech was the person uses a lot may remain available,
due to his drinking. A few beers he did enjoy, Getting her sister on an airplane to fly the more unusual words may be replaced by
but he never had a problem. His daughter short trip to Houston was challenging “thingy” or “you know”.
chalked it up to all the awful things he wit- enough, protesting vehemently that she had
nessed as a police detective. The formerly af- not done her nails and would not go. Dr. People with moderate SD will have im-
fectionate son who doted on his widowed Schulz concurred with Terri’s suspicion that mense trouble understanding what you say to
mother even became aggressive and threaten- her sister’s ailment was indeed, FTD. them. They have increasing difficulty recog-
ing, and afterward acted as if nothing had nizing names and faces of people- even family
happened. The diagnosis put a real name on the and friends. Reading and writing usually de-
bizarre change in Patsy, but the prognosis was cline but may still be able to do arithmetic.
The doctors Terri and her mother con- not what anyone wants to hear. There is no Progressive nonfluent aphasia (PNFA)
sulted offered many and sundry explana- treatment to the progressive degeneration,
tions, such as bipolar disorder, alcoholism, and no cure. But now, Terri and her brother’s Early symptoms include slowed speech
drug abuse, and once were even blamed for family understood it was more than likely the and trouble getting words out correctly. The
their loved ones problems. Terri did not give same disease that caused Michael’s death. person PNFA will become essentially mute
up on her quest for an answer, for a diagno- after five years or more and develop Parkin-
sis. She read any medical journal article she How could so many good professionals sonian symptoms that overlap with PSP
could, comparing the symptoms they de- miss the signs and symptoms of FTD? Easily, (Progressive Supranuclear Palsy) and CBD
scribed to those of her sister and brother. most don’t know about FTD. This became (Corticobasal Degeneration).
Terri’s mission, and the Frontotemporal FTD with motor neuron disease
In the meantime, Patsy was losing control Lobar Degeneration Association was born. (FTD-MND)
of her entire life. She could no longer hold a
job. She would go off without telling anyone FTLDA’s mission is simple, to raise aware- The most common form of MND is ALS.
and be located days later barefoot in a park- ness of FTD, educate medical professionals Cognitive or behavioral problems, slurred
ing lot. Michael was already retired, but went and advance research. speech difficulty swallowing, muscle wasting
completely underground, cutting himself off or limb weaknesses occur. About 15 percent
from his sons and daughter who adored him. What is FTD? of ALS patients have FTD on the day ALS
The crisis point came when the day after FTD is a progressive neurodegenerative is diagnosed another 60 percent have milder
Michael saw a physician at the VA and was degrees of FTD upon diagnosis. More will
told to go home and take two Tylenol, he disease with an average onset of 57 years of develop FTD later.
took his life. age. There are reports of onset as early as the
20’s. FTD affects as many people as (Source: UCSF Memory and Aging Center)
Terri was devastated and feared her sister Alzheimer’s disease in the 40-64 age group.
might follow suit without ever knowing what The Frontotemporal Lobar Degeneration
the problem was. Time was running out. There are several types of FTD: Association advances research through mon-
Behavioral variant FTD (bvFTD): etary support and facilitation of brain dona-
After contacting some of the authors of the tion for families who have a lost a loved one
articles she had read she found a community A person with bvFTD tends to exhibit with FTD. FTLDA is also working toward
of very curious researchers. They wanted to marked behavioral changes, such as emotional the goal set forth by the NIH meeting of
know more. Terri began to keep a journal of coldness, distance, stubbornness, selfishness NINDS to establish an international FTD
her sister’s behaviors and communicating disinhibition and overeating, especially sweets. clinical trial network data bank for clinical
with several researchers across the country. Impairment of judgment can lead to financial specimens, family histories and cohorts to
Dr. Bruce Miller, Director, Memory and Age- indiscretions with potentially catastrophic con- speed the clinical trial process.
ing Center of UC San Francisco was one who sequences. At times, they may behave inappro-
offered insight, as did Dr. Paul Schulz, Asso- priately with strangers, lose their social For more information about FTLDA
ciate Professor of Neurology, UTHealth- manners, act impulsively, and even break laws. contact us at: oxford@ftlda.org, or visit our
Memory is relatively normal, so dementia is website at: www.ftlda.org.
often not recognized.
visit us at www.bcms.org 29
