The Need for Planning for Hope

The Producer’s Story

Susan Lee Grant, Co-Executive Producer

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 losing 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.

The next graphic shows one way of thinking about how these diseases may be linked as well as what makes them unique. By investigating the unique characteristics of these diseases as well as the characteristics they share, scientists hope to learn even more than they would if they focused on each disease by itself.


Very, very early signs and symptoms – Preclinical Symptoms:
(Results of a survey of the FTDSUPPORTFORUM.com)

~ Something is changing in thinking.
~ Stopping mid-sentence -forgetting the end!!
~ Difficulty finding words
~ Math not in head- mathematical problem
~ Slows functions and hard to focus for very long periods
~ Get lost driving in familiar places

Dr. Murray Grossman of the University of Pennsylvania states that:

“Frontotemporal Disease is an umbrella term that encompasses several different neurodegenerative conditions, any of which can affect the frontal and temporal parts of the brain and impair language and cognitive functioning. In the past it was called Pick’s disease. A definitive diagnosis of FTD can be made only after examining brain tissue on autopsy, and this has hampered our ability to provide patients with the best possible treatments. Very important work is now underway to try to sort out what kinds of techniques we can develop and what kinds of biomarkers we can use to identify the specific histopathologic conditions causing FTD during life…

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.”