Short List Clues to Identifying FTD or Pick’s Disease

If you wonder things like “Did they have a stroke?” “Are they depressed?” “Are they having problems due to alcohol consumption?” “Why are they acting so strange?” “Are they Schizophrenic?” “Have they lost their mind?” “They would never act like this in their right mind”

If we had seen a published list of behavior changes related to Pick’s or FTD on Good Morning America or Oprah, we might have realized sooner what was going on with them. When I look at the list, I say to myself, why didn‘t I see it, why didn‘t I recognize it sooner? It is like those mind bender puzzles, once you hear the answer, you go OH of course that is the answer.

Here is my list, but my brother and sister were poster children for FTD, so you will see these behaviors on many lists:

Early Stage

More flirtatious with opposite sex
Depressed; felt the world was crashing in on occasion
Compulsive behaviors; my brother used a women’s bathroom in a fine dining restaurant (he would never do that normally). Behaviors out of the norm for them
Would drink alcohol in group situations, makes them feel more confident
Mood changes are slighter in this stage; can get angry, but you generally can reason with them
Start drawing or showing artistic (could be music) abilities

Middle Stage

More reclusive, paranoid behaviors
Talk less
Smiled less
More conscious about spending money
Read less and watch more TV
Stop favorite activities; golf, because not able to make a put anymore
Speech is harder to understand; suspect they may have had a minor stroke
More aggressive behaviors; loose temper easily and can be physically violent
Problems keeping a job
You notice fewer friends around
Inappropriate behaviors; walk in on you in the bathroom/bedroom, change the TV station while you are watching it, pass gas in a restaurant, eat with mouth open, laugh at sad things, just RUDE
Rigid in behaviors. Taking a vacation, you get to airport and they say they have to go home to do their nails.

Later Stage

Repeat familiar phrases; i.e. Have a Nice Day, It’s a Great Day, eventually mute
Flip words around; Merry Birthday
Rarely smile
Crave sweets
Stop cooking, become afraid of using appliances or electronics
Paranoid behavior; shutting the blinds, locking the doors
Inability to function or interact in social or personal situations
Problems with personal hygiene
Repetitive behavior; go to the same store, buy the same candy bar
Rapid mood change, violent, angry
Failure to show concern, empathy, sympathy, compassion
Gain weight, physical changes, they walk differently or slump shoulders
Stop bathing, cleaning house, or doing laundry
Reckless driving
Less writing and signature may change drastically
Urinary incontinence

What is Frontotemporal Dementia

Taken from NINDS Frontotemporal Dementia Information Page
(National Institute of Neurological Disorders and Stroke)

What is Frontotemporal Dementia ?
Frontotemporal dementia (FTD) describes a clinical syndrome associated with shrinking of the frontal and temporal anterior lobes of the brain. Originally known as Pick’s disease, the name and classification of FTD has been a topic of discussion for over a century. The current designation of the syndrome groups together Pick’s disease, primary progressive aphasia, and semantic dementia as FTD. Some doctors propose adding corticobasal degeneration and progressive supranuclear palsy to FTD and calling the group Pick Complex. These designations will continue to be debated. As it is defined today, the symptoms of FTD fall into two clinical patterns that involve either (1) changes in behavior, or (2) problems with language. The first type features behavior that can be either impulsive (disinhibited) or bored and listless (apathetic) and includes inappropriate social behavior; lack of social tact; lack of empathy; distractability; loss of insight into the behaviors of oneself and others; an increased interest in sex; changes in food preferences; agitation or, conversely, blunted emotions; neglect of personal hygiene; repetitive or compulsive behavior, and decreased energy and motivation. The second type primarily features symptoms of language disturbance, including difficulty making or understanding speech, often in conjunction with the behavioral type’s symptoms. Spatial skills and memory remain intact. There is a strong genetic component to the disease; FTD often runs in families.

Michael and Patsy had symptoms from both, changes in behavior and problems with language. As the disease progressed, so did the symptoms.


Is there any treatment?
No treatment has been shown to slow the progression of FTD. Behavior modification may help control unacceptable or dangerous behaviors. Aggressive, agitated, or dangerous behaviors could require medication. Anti-depressants have been shown to improve some symptoms.

Anti-depressants did help Patsy with the aggressive and angry behaviors. Sleeping pills helped her to rest at night.

Since we didn’t have clue what was going on with Michael, no drugs were administered, so no benefit here. Two weeks before his death, a doctor prescribed Aricept. A doctor later told us, this was the wrong medication, it actually gave him the ability to plan his death. He said it made the disease speed up in his case, allowing him to think more clearing in short periods of time.


What is the prognosis?
The outcome for people with FTD is poor. The disease progresses steadily and often rapidly, ranging from less than 2 years in some individuals to more than 10 years in others. Eventually some individuals with FTD will need 24-hour care and monitoring at home or in an institutionalized care setting.

After putting together a graph of behaviors over the years, I was able to trace Patsy’s odd behaviors to her late 20’s and Michael’s to his 30’s. Both progressed slowly until they weren’t working on a regular basis and at that time, it seems the disease progressed more rapidly.


What research is being done?
The National Institute of Neurological Disorders and Stroke (NINDS), and other institutes of the National Institutes of Health (NIH), conduct research related to FTD in laboratories at the NIH, and also support additional research through grants to major medical institutions across the country.

I tried to get Patsy into a clinical trial in NIH, that was the only facility at the time with any trials. We couldn't work it out, since it was so far away and there were no government funds or assistance to help with living expenses/lost wages etc with a location so far away from home (DC Area only at that time). Dr. Paul Schulz, a Neurologist in Houston did want our family to participate in on going testing to keep an eye out. As of this date, we have not done that. There is still very little being done in research compared to other diseases. One doctor told me "Today is like the 1980's were to Alzheimer's, we are just starting to work on FTD Education and Treatment."