Now that Rita has passed, I will explain the medical problem she was suffering from. First a little background. Rita was an exceptionally talented person. She was running a successful consulting business as a virtual administrative assistant, with her specialty being artists. She would use her computer and the Internet to develop websites for her clients, put together portfolios on CD of her client’s works to be sent to prospective art galleries & museums, and arranging showings of her clients work. Both her office & the office for my consulting business were in our house, and in late 2008 I was noticing that she was having trouble performing tasks; often hearing her curse at her PC. In spring of 2009 she asked me if she could shutdown her business, and thinking that she was being affected by stress, I agreed.
Unfortunately this did not last. Two of her previous clients contacted her; one for revisions to their website, and the other for a large printing & mailing job. Neither of these went well, with more cursing, and considerable frustration by the unhappy clients. She would come over to my office to ask me how to do tasks that she had done hundreds of times before, such as burning a CD. While she would be asking me a question she would often have trouble saying a word or two, often substituting a word that her eyes had seen on a paper on my desk, or on the screen of my monitor. In October of 2010 we drove to Disney World for her birthday. This was our first time to drive the trip, and I thought we would surely die. We took turns with the driving, and her driving was very erratic. She would swing from lane to lane without reason very often resulting in the person behind sounding their horn as she cut them off. She pressed to do the whole 18-hour trip in a single shot with only short 15-minute breaks. One time, while I was the passenger I woke up to find we were driving 80 mph on the shoulder of the road as she had fallen asleep. Somehow we managed to make it unharmed, with only a flat tire. However, as I was sitting across from her at restaurants, I noticed that she was not the same person. She was sitting very slouched, her hands were shaking, and her tongue was constantly flicking out of her mouth to lick her lips.
Shortly after returning home I had a visit to the doctors office to have a plantar wart on my one foot looked at. I explained Rita seemed to be forgetting things, having troubles driving correctly and saying the right words. Concurring with my thoughts that it might be the result of work related stress, the doctor recommend a psychiatrist. Let me tell you that it is very difficult to convince a person that they need to see a psychiatrist. Over the next several months things continued to get worse. I was finally able to get her in to see a psychiatrist who, after a series of mental gymnastic-like tests, wrote a script for a brain CT scan, and prescribed Namenda (an Alzheimer drug). At our follow up visit he explained that the CT scan showed areas of her brain were shrunken more than was normal for her age and suggested we see a neurologist.
At this point things started to happen rapidly. Rita had many doctor visits, hospital visits, blood tests, urine tests, MRI & CT scans of the brain, a CT scan from neck to pelvis, and a spinal tap. The final diagnosis, confirmed by 3 different neurologists, was that Rita had dementia caused by Frontotemporal Degeneration. This is often shortened to Frontotemporal Dementia or is abbreviated as FTD. The cause is unknown and at this time there is no known treatment nor cure. The front & side lobes of the brain start to degenerate, and as these lobes shrink away, the functions that they support are lost. In Rita’s case this included judgment such as how far to turn the steering wheel of her car so as to not hit the curb in a turn or a parked car while parking next to it, and also when not to yell curse words (her favorite was “F… It”) while amongst people at Disney World or while shopping. She was doing this when her brain got overloaded with stimuli or she was having trouble saying the proper words. The other function she was losing was the ability to pull words out of her mind in order to say, type, or write them. This is referred to as logopenic primary progressive aphasia. Toward the end, this had progressed to a point that even simple Yes or No answers to questions were not always correct. For this I created some wallet size Yes & No flash cards which I always carried and used when I was having a problem getting a consistent answer from her. I would have her point instead of trying to say the word.
She was having increasing numbers of dizzy spells. The day of her death we were going up the stairs for a shower. She was about 2/3rd
of the way up when she apparently got dizzy losing her balance, and she fell backwards going the whole way down hitting the back of her head on the tile covered concrete floor in the foyer. She was air lifted to a local trauma center in Philadelphia. However, swelling of the brain prevented blood from being able to be pumped through the brain thus causing it to be starved for oxygen. This caused the brain stem, through which all brain functions pass, to die. Without getting proper control signals, the heart stopped functioning. A very tragic and sad ending for such a talented and loving person.
FTD is as common as Alzheimer’s Disease, just not as widely known. I had been taking her to an adult daycare center twice a week that was for people with any type of dementia problems. They also ran a caregiver support group meeting, and at the two I attended, all of the other attendees were also taking care of relatives with dementia caused by FTD. FTD seems to primarily affect people in their 40s & 50s whereas Alzheimer’s Disease primarily affects people in their 60s & onward. People diagnosed with FTD typically live for about 6-8 years; not dying directly from FTD but from some related illness such a pneumonia or a fall. So you may ask where does FTD come from? Unfortunately that is not yet known. However there is information about FTD you can read on the Internet. A good starting place is at: