Day 1

My name is Mark T. Anderson. I am a retired Soldier with 32 years of service to this great nation. I am a husband, father, and grandfather. I am a political scientist, with a Master of Public Administration degree and some doctoral work.

I am dying from frontotemporal lobe dementia, also called FTD. Dr. Rodney Quinn in Springfield, Missouri diagnosed my illness in January 2009, and it was confirmed by Dr. James Galvin, the Director of the Washington University Memory Diagnostic Clinic.

The National Institutes of Health Frontotemporal Dementia Information Page (see http://www.ninds.nih.gov/disorders/picks/picks.htm), the National Institutes of describes Frontotemporal dementia (FTD) as, “… a clinical syndrome associated with shrinking of the frontal and temporal anterior lobes of the brain ... The current designation of the syndrome groups together Pick’s disease, primary progressive aphasia, and semantic dementia as FTD …” and “… 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.”

Recent research by Dr. John Q. Trojanowski, M.D., PhD, (see http://news.healingwell.com/index.php?p=news1&id=527876) at the University of Pennsylvania Institute on Aging indicates that the average survival time for FTD may be just three years and that FTD kills patients more than twice as fast as Alzheimer’s, with a maximum survival time of approximately 5.7 years.

I have continued to remain relatively high-functioning, which is an anomaly for this disease. Until January 2011, I was the technical program director for a United States Army effort that was heavily reliant on cutting edge technology. I still have friends and colleagues contact me for technical advice, and a consulting job for a close friend is a big maybe at this time. I am currently teaching a recurring graduate course in research methods, and in March will teach one iteration of a graduate course in strategic management, which I taught previously.

Having said that, I am just do not hit on all cylinders, as we used to say in the Army. I get easily lost in unfamiliar places, and find that I experience both fear and embarrassment when that happens to me. Because my primary symptom is semantic dementia, I am fluent with normal phonology and syntax but am experiencing increasing difficulty with naming and word comprehension. This is incredibly frustrating, as I had always had a tremendous vocabulary. In 1995 the Department of Veterans Affairs tested me in support of a claim for vocational rehabilitation. The Psychologist determined that I possessed at that time an IQ in excess of 162 on a Wechsler Adult Intelligence Scale (WAIS)-III, and my abilities in the verbal comprehension, working memory, and processing speed scales were so high that they could not accurately measure them. Recent testing on WAIS-IV and Mini-Mental State Examination were less than encouraging, however.

To be honest, I have more health issues than just FTD. I provide a complete list here, as follows:

1. Presenile Dementia, Uncomplicated, Early Onset Alzheimers type (ICD-290.10)
2. Diabetes Mellitus, Type II, controlled (ICD 250.00)
3. Reynaud’s Phenomena (ICD 443.0)
4. Sleep Apnea (ICD 327.23)
5. Occular Migraines (ICD-346.0)
6. Migraines(ICD-346.0)
7. BPH (diminished prostate) (ICD 600.01)
8. Factor V Leiden (ICD 289.81)
9. Major depressive disorder, severe, recurring (ICD-296.3) (who would not be depressed with a death sentence over their head, eh?)
10. Sjogrens Syndrome (SC) (ICD-710.2)
11. Pulmonary Hypertension (ICD 416.8)
12. High Cholesterol (ICD V65.3)
13. Thyroid Nodules (ICD 242.4)
14. Gastro esophageal Reflux Disease (SC) (ICD 530.81)
15. Myalgias, Arthralgias (SC)
16. Non-Alcoholic Steatohepatitis (immune mediated hepatitis)(SC) (ICD 571.8)
17. Deep Venous Thrombosis, Resolved (ICD 453.41) with Dependent Edema

I take so much medication that I have to keep all of the bottles in a bin rather than a medicine cabinet. One of my medicines, Migranal, is over $100 per dose.

I decided to keep this blog to help document the changes in my cognitive state as a function of time. My disability attorney, a former Federal Administrative Law judge, got my wife and me into the habit of documenting my day to help others understand how hard it was for me to be out among other people. I find that I still write very well, although it takes me a great deal of time to organize and express my thoughts. For example, it required about two hours to organize and write this short background on me. It is my fervent hope that researchers will find this information useful, and that someday no one may suffer from this disease.

Day 1

Today I woke at 0530, but was very tired and dozed for a while. My wife got up to read her daily devotional, so I got up to drink coffee just like any other morning. Our 28 month-old grandson arrived and we got his breakfast, then both of us began to read to him. At 1000 we went to the public library to return some books we had checked out for our grandson. I was able to remember that I had asked for a book on interlibrary loan, but it had not arrived yet. I began to experience balance problems and had to hold onto the wall a few times as we left the library. We then went to the local mall to walk. I had to hold onto our grandson’s stroller for balance, and occasionally my wife observed that I was dragging my feet. At one point I stopped and was completely disoriented, even reading the signs I could not remember which way to go. My wife patiently attempted to coach me to make a correct decision, which I did after about three minutes. I was almost panicked by that time, and very embarrassed that I did not know which way to go if the child had been in my sole care. We then came home and I worked on materials for my students – it took me approximately two hours to send one email with materials that I had prepared over the past four days. After we had dinner, we needed to take my son somewhere, and I was unable to articulate the phrase “leather jacket” in an inquiry, and had to have my wife walk me through our coping strategies for words that I cannot grasp. When I returned home, I began this blog … and argued with my wife (very uncharacteristic of me before this disease surfaced) about going to be versus getting the job done.

More to follow (MTF).