At the age of 53, I was at the peak of my career. I was in the top 1% of the 10,000 financial advisors at American Express Financial Advisors, and loving every minute of it. I expected to work another 10-15 years helping people make the best financial decisions and then retire to see the world.
Slowly, a creeping dread overtook me. I realized that I was loosing my mind. With growing terror, I began tracking the changes I knew were undeniably changing my life forever. After many misdiagnosis and a multitude of self-financed medical tests I finally traced the source with the help of doctors at the Mayo Clinic.
Frontotemporal Disease, FTD, is little-known, not high-profile or championed by celebrities, but is quietly robbing its victims of their personalities, their reasoning, their relationships and ultimately their lives. FTD accounts for as many early dementia sufferers as does Alzheimer's under age 65, and often appears in men and women as young as their thirties.
Docs first try to rule out depression, menopause, or general anxiety, which often takes over a year.
FTD has for years been misdiagnosed as Alzheimer's, Parkinson's, Bipolar, and Schizophrenia. The link to ALS (Lou Gehrig's disease) expanded the research which then lead to a clearer understanding of the differences - Alzheimer's is memory while Frontotemporal Disease is reasoning and executive functioning; and FTD's range for onset is 30 - 65, much younger than the average age of Alzheimer's. It is likely that the disease is present for many years before it actually manifests itself in subtle ways. FTD often appears familial as well passing from one generation to the next, though it may affect some siblings but not others. But the research is progressing quickly and holds hope for future generations who will be touched by this debilitating disease.
Neurodegenerative diseases like AD, Parkinson's disease, Amyotrophic Lateral Sclerosis (ALS), and Lewy Bodies share more than the basic characteristic of misfolded proteins. They also share clinical characteristics. For example, people with AD have trouble moving, a characteristic of Parkinson's disease. Sleep-wake disorders, delusions, psychiatric disturbances, and memory loss occur in all of these diseases. These diseases also result from a combination of genetic, lifestyle, and environmental causes and they develop over many years.
Very, Very Early Signs and Symptoms - Preclinical Symptoms:
It's clear in any progressive neurodegenerative condition that the earlier we intervene, the earlier we start a treatment, the greater the likelihood that a better outcome will be achieved for the patient. We'd like to be able to identify people earlier, when they don't have full-blown disease but only have some of the initial inklings of what might be coming in the future. If we can intervene at that early point, we're going to do much better than if we wait for the disease to fully manifest...
We're trying to do the same thing in FTD, that is, to identify people who have some of the very earliest signs of FTD so that we can treat the condition early. This may be even more important in FTD because of the relatively early onset of the condition, when families are still young and haven't yet developed the social and financial resources to deal with a slowly progressive neurodegenerative condition. Our strategy for identifying the earliest features of FTD is to study families where there is a higher risk for the development of this condition. We are also hoping to study the subgroup of MCI patients without memory difficulty, that is, the MCI patients with subtle problems in other cognitive domains...
Knowing the underlying cause of a dementia- whether it is tau or something else-is the first step toward curing the condition. That is really our goal."
"Most of us probably started out going to our primary care physicians looking for guidance and diagnosis. In our particular case, all the symptoms I presented were brushed off as "nothing" especially with my husband sitting next to me denying everything. After finally dragging my husband to the neurologist and ultimately having to diagnose him myself (thanks to the internet) I went back to the PCP and told her that we were dealing with FTD. She had never heard of it before. We'll it's no wonder patients are not getting diagnosed when the doctors are ignorant to the fact that the disease exists."
"The biggest thing for us has been the part about our LO not knowing he is sick. Because he started with this while still in his 40's...that made everything about him thinking it was someone else harder. Having three children at home and being right smack in the middle of the wage earning...Plus, the denial of the LO spreads easily to others when the LO is young. And that can devastate the immediate family. If you pretend the problems with behavior and insight are not there - you create a nightmare of danger and liability. (drinking and driving come to mind. Trying to continue working, giving away money, signing contracts, participating in dangerous sports....) Not to mention the tens of thousands of dollars spent on tests etc...to prove he was not sick. That is my wish (to see in the film)."
"More recently when everyone is saying that I look so good, I say 'that is the curse of this disease!'"
"Sometimes I just don't want to look back because it forces me to look forward and that's a place I don't want to go."
"It happened to me 3 times. In each case, it happened when I was supposed to be in a room and I was not there. My wife came to look for me and I was not there. Then she started to look for me. When she found me, she told me that she was looking for her hb. I was telling her - I am your hb. She was saying no you are not, and kept looking for a job. I had to go back to where I was supposed to be and wait for her to come back to the room. Then she was saying, ha there you are - I was looking for you. It seems that when stressed out, her brain was stopping to function properly. Since that time, I never leave my wife alone, and it has not reocurred. It is indeed a very strange sickness."
"It is a shock to me every time I see my mom now. I watch her as she sleeps in the chair with her head down and I remember what she used to be like and what she used to look like. I don't want to have these memories. But, it is getting harder and harder to remember her when she was well. Maybe that is why my brother doesn't want to visit her. I tell him how she is and what she does, but seeing it firsthand is quite different. She is totally mute, her walking abilities are almost gone, she is completely incontinent, yet she is eating like crazy. She doesn't seem to get enough food. And, she is swallowing with no problem. Each week, I expect to see that disappear. And, then, it will be the end. My mom would not want to be living like this."