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* Educate healthcare professionals

* Establish a clinic for FTD sufferers

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Wednesday, December 17, 2008

Great website UCSF

I think University of California San Francisco does an excellent job of describing FTD. Twice we sent of Patsy's blood work for confirmation of one of the strains of PICKS. She tested negative. It is the only place in the US that tests for this.

Disease Progression
FTD usually first appears when someone is in their mid-40s to early-60s and causes a steady, gradual decline in the ability to complete the daily activities of life. The disease can last anywhere from three to 17 years from the first symptom until death, with an average duration of eight years after diagnosis.

Behavioral variant FTD

Mild bvFTD

In the first several years, a person with bvFTD (often called Pick's disease or just FTD) tends to exhibit marked behavioral changes such as disinhibition, apathy, loss of sympathy or empathy for others, or overeating. Problems with planning organization and sometimes memory are evident, but the individual is still capable of managing household tasks and self-care with minimal help. However, impairment in judgment can lead to financial indiscretions with potentially catastrophic consequences. Social withdrawal, apathy and less interest in family, friends and hobbies may be evident. At times, they may behave inappropriately with strangers, lose their social manners, act impulsively and even break laws. But at this stage, the behaviors can often be managed with lifestyle and environmental changes (read our practical tips for ideas). A MRI image at this point will show mild atrophy in particular areas of the frontal lobes. [Michael got his 1 ticket for speeding and my sister had an accident; both had previously been very careful drivers. Both slowly withdrew from social situations, friends and family. Both gave up hobbies, sports, and cooking...gradual at first.}

Moderate bvFTD
Over the course of a few years, the symptoms seen in the mild stage will become more pronounced and disabling. You might also notice compulsive behaviors like repetitive urination, hoarding or collecting objects, compulsive cleaning or silly repetitive movements (like stomping on ants). Binge eating may create weight problems and other health issues. The cognitive problems associated with dementia become more pronounced, with mental rigidity, forgetfulness and severe deficits in planning and attention. The MRI image at this point will show that the shrinking of the brain tissue has expanded to larger areas of the frontal lobes, as well as the tips of the temporal lobes and basal ganglia, deeper brain structures involved in motor coordination, cognition, emotions and learning. [My sister would go to the bathroom every 5 minutes (generally not doing anything, just going through the motions), Michael would suck on his teeth, both would repeat short phrases ie "Have a nice day" "Life is good", both craved sweets and would eat as much as you would put in front of them - neither had a weight problem before the disease, but gained weight during this stage. There was no reasoning with them if they wanted to stay or go, would be very rigid about certain things...this varied. Didn't seem to care if they saw their children or grandchildren, didn't want to hold the babies. Patsy would collect straws, sugar packets, plastic cups and hide them in her closet.]

Severe bvFTD
By this point the patient is experiencing profound behavioral symptoms (apathy, loss of empathy, disinhibition) in association with language difficulty and memory loss. They may have trouble coordinating their muscles at this point and may require a wheelchair. Usually 24-hour care is required, whether at home or in an institution. The physical decline and changes that occur throughout the disease course become more and more obvious at this stage. Eventually, the person with FTD may have great difficulty swallowing and moving and they may have urine and/or bowel incontinence. Death from bvFTD is usually caused by the consequences of these physical changes, most commonly infections in the lungs, skin or urinary tract. Although it can vary widely, the time from the first symptom to the end is typically about eight years, whereas the time from diagnosis is, on average, about five years. [Michael died as he was approaching this stage. Patsy progress just as outlined here. The last few months before she passed away, her muscles seemed to not respond at all. She couldn't use her hands and they were swollen.]

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