Frontotemporal

Dementia

What is FTD?

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.

Early Signs & Symptoms

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 states that: 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.

Current Progress on FTD Research

Major breakthroughs are happening in research of neurodegenerative

diseases. Science and the medical communities have made tremendous

advances in understanding, diagnosing, treating and preventing a fairly rare

and cognitive disease called FTD, Frontotemporal Disease. Baby boomers are

worrying about their parents Alzheimer’s Disease, while this newly studied

FTD, under the age of 65 is just as common as Young Onset Alzheimer’s.

Mayo Clinic, a leader in the neurodegenerative diseases, is helping make

tremendous strides toward understanding, diagnosing, treating and preventing

this family of diseases. At great expense, Mayo came up with the genetically

altered mouse, in this case, to develop abnormal proteins causing some of the

main neurodegenerative diseases. It is this mouse that is enabling research

and treatments to progress faster than would otherwise have been possible.

Mayo licenses the model to major pharmaceutical companies and offers it free

to universities and research centers.

Neuroimaging Techniques

One of the exciting ongoing researches being done is in

the area of neuro-imaging. Highly sophisticated imaging

including Pet Scans, SPECT Scans, and MRI’s are

helping scientists measure the earliest changes in brain

function or structure to identify people in the very early

stages of the disease-well before they develop clinically

apparent signs and symptoms. Other biomarkers are

being developed with the imaging information from

clinical, memory, and other cognitive functional tests,

while other information is being derived from blood,

cerebrospinal fluid, and urine samples. Pittsburgh

Compound B (PiB) has been utilized allowing researchers

to “see” beta-amyloid in the living brain, an indicator of

Alzheimer’s.

Genetics

Genetic counselors construct pedigrees, or graphic illustrations of family

structures/trees and health history for analysis of neurodegenerative diseases.

Typically geneticists look at three generations of family members to pinpoint any

similarities of medical issues or diseases that might pass through from one

generation to the next. With this valuable information, they can speculate what

the probability is that a genetic mutation/disease will pass on to the next

generation. While this information gathering can be quite stressful, it can help

persons with prospective neurodegenerative diseases, such as FTD or the other

variants of FTD, or Young Onset Alzheimer’s, etc. to plan for themselves and

future generations. These plans can include current and future treatments,

family planning, and counseling. FTD can be sporadic, familial, or hereditary. It

can develop in one person at a time rather than being inherited. It also can be

found in up to 50% of the family, showing a higher level of risk between

generations. Hereditarily speaking, approximately 10% of FTD’ers show a

dominant pattern of inheriting the disease. Genetic counseling is extremely

important for the family displaying FTD or neurodegenerative diseases. It can

open the doors of communication between family members, and provide

advocacy of health care for families.

Caregiving, Family Help, & Finances

“Talk, Talk, Talk”- So very many people keep what changes they are noticing

about themselves discreet; they are not telling anyone about these changes.

Since this disease comes so early, the patient can help make choices about

how care will be delivered. The patient can help build strong relationships

between himself/herself and loved ones. Strengthening and educating family

members to reduce the daily stressors that come from unhealthful responses to

difficult behavior should be a high priority to encouraging a more stable and safe

lifestyle for all.

The financial industry will be encouraged to lower the age range, closer to 40,

when their Long Term Care Insurance should be purchased rather than

retirement age. Get people on SSDI (Social Security Disability Insurance) as

soon as possible, encourage employers to provide disability insurance for their

employees, and discuss the documents needed, such as the Power of Attorney,

Medical Power, and will/trusts.

About "Planning for Hope"

Something must be done. People are suffering, families are being pulled apart,

and patients are being misdiagnosed and improperly treated. I, Susan Grant,

decided that others need not suffer as I have through countless tests and doctor

visits in order to find answers. I decided to fight for awareness so that the

disease that afflicts me and thousands of others worldwide would share in

deserved scientific spotlight so that future generations would have hope.

In the documentary Planning for Hope: Living with Frontotemporal Disease and

on the pages of the Planning for Hope website, you can learn more about this

disease, its impact, and sources of hope for victims and their families. Although

there are hundreds of thousands FTD victims in the United States alone, they

tend to live in different areas and have limited opportunities to share with other

FTD victims.

To learn more about FTD and order the Planning for Hope DVD, go

to http://ftdplanningforhope.com.

Producer's Story

My name is Susan, and I suffer from a disease of the Frontotemporal lobes

(FTD).

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.

Instead of going silently into that good night, my caregiver Cindy and I have

dedicated two precious years of what remains of my life to creating a film,

“Planning for Hope”. Bold and arresting and still in the works, it is aimed at

unveiling the truth about Frontotemporal Disease, addressing the surrounding

issues and controversies, and offering hope to those affected.

Watch the Documentary

Click on the image below to watch the documentary:

Oder the DVD

Planning for Hope captures some of the most brilliant medical thought

leaders and passionate researchers exploring technologies and methodologies

for diagnosing and differentiating FTD from other dementias, crucial discussion

from business professionals on financial and estate planning, and heart-

wrenching footage of families in a perpetual state of grieving amidst financial

struggles and the loved ones affected by frontotemporal disease. Today there

is no known cause, treatment or cure for FTD. However, the film promises that

there is hope for better health outcomes in the future as science is moving at a

fast pace.

Producers: Cindy Dilks and Susan Lee Grant

Language: English

DVD Release Date: December 2010

Run Time: 57 Minutes

The Planning for Hope DVD is now available for private individuals,

healthcare professionals, institutions and associations. The DVD costs $20.00

per copy, plus $3.95 shipping & handling for the entire order. Sales tax is

added for Ohio addresses. To order online, click here.

Donate to the Film's Distribution

The goal of Planning for Hope is to raise awareness about this disease and its

effects on the patients and families who feel largely abandoned by the medical

community. In it, IMS Productions interviews some of the most captivating

families, neurologists, brilliant researchers, imaging specialists, psychologists,

psychiatrists, attorneys, and financial advisers. They shot and edited hundreds

of hours of film and now Susan Grant and Dr. James Coyle are working hard to

distribute the final documentary – while Susan still can.

Many volunteers have helped raise funds, edit clips, tele-market, and distribute

the film.

Help us achieve the funding needed to distribute the documentary to patients,

their families, and medical professionals. Donations help pay for distribution of

the film, and when this goal is reached, will be directed to research.

Donations may be made in HONOR or MEMORY of a loved one or family, or as

a GENERAL donation to support distribution of the documentary.

Planning for Hope is a 501(c)(3) non-profit organization, EIN 45-1612049, and

your donations are tax-deductible in accordance with U.S. IRS regulations.

Click to Donate

Resources

• Facebook: https://www.facebook.com/pages/Planning-for-

Hope/434382666673477

• Twitter: https://twitter.com/PlanningForHope

• Pinterest: http://www.pinterest.com/planningforhope/

• YouTube: http://www.youtube.com/user/FTDPlanningForHope

• Website: ftdplanningforhope.com

• PBS Airing Dates-Baby Boomers fear losing Cognitive Ability more than

Death https://www.causes.com/causes/784538-baby-boomers-fear-losing-

their-cognitive-abilities-more-than-death

• If you are diagnosis of FTD, please consider taking our

survey http://surveymonkey.com/s/earlysignsftd- pw:ftdearlysigns

• To Buy DVD for families, friends and local docs, visit ftdplanningforhope.com

• "Living with Frontotemporal Disease"

(Ebook) http://www.slideshare.com/susanleegrant

• "Planning for Hope-Living with Frontotemporal

Disease" documentary http://www.youtube.com/user/FTDPlanningForHope

Get Involved in our Causes Campaign

Planning for Hope is a poignant, informative documentary about

Frontotemporal Disease (FTD). This disease represents an estimated 10%-

20% of all dementia cases and is recognized as one of the most common

dementias affecting people 40s and 50s.

This important story for the people in your community is now available to your

local public television station (PBS affiliate), but they need to hear from viewers

in their communities asking them to schedule the program!

And the time to contact them is now. Public television stations can receive and

broadcast the program until early April, 2014.

If you'd like to have Planning for Hope broadcast or re-broadcast on your local

PBS station, please use Facebook and Email to encourage station managers

across the country air the program. The suggestions on this page will make it

easy for you to contact them. It just takes a few minutes.

Click here to Learn How