My First Blog and What is Frontotemporal Dementia

So, I'm blogging.  I've never done this before, but I've found that I need a place to write all my thoughts down.

Let me tell you a little bit about myself & my life -

I'm in my mid-20's.  I'm a massage therapist.  I'm an avid hockey fan.  My mother has frontotemporal dementia(FTD).

Frontotemporal dementia is basically brain atrophy, or shrinkage, of the brain.  It affects the front and temporal lobes of the brain.  These sections control logic, emotions, language, movement, speech, and personality.  The disease is often misdiagnosed as a psychiatric or mental illness, and patients have can often go years with before getting the correct diagnosis.  From the Association of Frontotemporal Degeneration(http://www.theaftd.org/), here is an outline:

Frontotemporal Degeneration

Frontotemporal degeneration (FTD) is a disease process that results in progressive damage to the anterior temporal and/or frontal lobes of the brain. It causes a group of brain disorders that share many clinical features. The hallmark of FTD is a gradual, progressive decline in behavior and/or language that often has a relatively young age at onset (mid-50s to 60s), but has been seen as early as 21 and as late as 80 years. As the disease progresses, it becomes increasingly difficult for people to plan or organize activities, behave appropriately in social or work settings, interact with others, and care for oneself, resulting in increasing dependency.
FTD represents an estimated 10%-20% of all dementia cases and is recognized as one of the most common dementias affecting a younger population. It is estimated that FTD affects approximately 50,000-60,000 Americans. FTD occurs equally in men and women. In a small percentage of cases, it is inherited.
While there are currently no treatments to slow or stop the progression of the disease, FTD research is expanding, producing greater understanding of the disorders. We anticipate that this knowledge will result in a growing number of potential therapeutics entering clinical testing within the next few years.

Brain Image

Clinical Presentations

The frontal lobes of the brain are associated with decision making and control of behavior, and the temporal lobes with emotion and language. While FTD is marked by a range of behavioral, personality, and cognitive changes, several subtypes of the disorder have been identified based on distinct symptoms and clinical presentation.
Frontotemporal degeneration characterized by loss of empathy and increasingly inappropriate social behavior is known clinically as behavioral variant FTD (bvFTD), Pick’s disease, or frontal variant FTD (fvFTD). When problems in language are prominent, the clinical syndrome is known as primary progressive aphasia (PPA). FTD with motor neuron disease, corticobasal syndrome, and progressive supranuclear palsy are subtypes of FTD characterized by muscle weakness, rigidity and/or parkinsonian symptoms.
Behavioral presentationBehavioral changes are typically seen as changes in personality, emotional blunting or loss of empathy that result in increasingly inappropriate social behavior. People gradually become less involved in routine daily activities and withdraw emotionally from others. Despite acting this way at home, they may also become disinhibited when in public or with strangers. Unusual behaviors may include swearing, overeating (especially carbohydrates) or drinking, impulsivity, shoplifting, hypersexual behavior and deterioration in personal hygiene habits. Accompanying this is a decreasing self-awareness: the patient displays little insight into how inappropriate his or her behavior is, and little or no concern for its effect on other people, including family and friends. Patients may also display repetitive, stereotyped behaviors, such as hand clapping, humming the same song over and over, or walking to the same place day after day.
Language presentation
Language deficits experienced by FTD patients are distinguished by principally two presenting issues: problems with expression of language and problems with word meaning. People with nonfluent/agrammatic PPA become hesitant in their speech and begin to talk less, but appear to retain the meaning of words longer. In semantic variant PPA, people experience a progressive deterioration of understanding words and recognizing objects, but retain the ability to produce fluent speech. A third variant, logopenic PPA, is characterized by deterioration in a person’s ability to retrieve words.
Movement presentation
Problems in motor skills and movement characterize two frontotemporal disorders. Corticobasal syndrome (CBS) begins with a decrease in movement on one side of the body and muscle rigidity with a tremor. Progressive supranuclear palsy (PSP) causes problems with control of gait and balance. The inability to coordinate eye movements is a characteristic symptom of PSP. Problems similar to those seen in Parkinson’s disease or ALS may also be seen.
Cognitive and emotional symptoms
Damage to the brain’s frontal and temporal lobes affect complex thinking and reasoning abilities which can result in other symptoms commonly associated with FTD. Increasing impairment in “executive functions” affects a person’s ability to plan, organize and execute activities, while emotional changes impact relationships. Symptoms may include:

• Distractibility and impersistence, increasing difficulty staying on task mentally.
• Mental rigidity and inflexibility, insistence on having his or her own way, increasing difficulty adapting to new or changing circumstances.
• Planning and problem solving impairments, abstract reasoning decreases. Examples of this would include difficulty coordinating the cooking of a meal or making a shopping list and performing necessary errands.
• Poor financial judgment, impulsive spending or financial risk-taking.
• Emotional blunting or abnormal emotional reactions to others. Examples would include being inappropriately calm when a significant other has been hurt or is threatened, or being unfeeling or self-centered when empathy would usually be called for (such as a funeral). Some show emotions that may be exaggerated or inappropriate for the circumstance.
• Apathy, reduced initiative, lack of motivation and an apparent loss of interest in previously-enjoyed hobbies and social activities.
• Lack of insight into one’s behavior develops early; the patient does not recognize changes in his or her own behaviors and shows no concern for the effect these behaviors on others, including loved ones.
• Mood changes that can be abrupt and frequent.

My aunt and I are my mothers caregivers.  For now, I think this is enough for everyone to take in....