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Living with Frontotemporal Disease e-book
1. “For a long time,
I told my M.D. that
something was
different in my brain.”
S Susan was a top financial advisor and at the height of her career, when
she began to notice small changes in her thinking. More often she forgot
peoples’ names and struggled to find words. She found it a little harder to
concentrate and stay focused. Sometimes her brain would not process
something for several seconds. Susan's doctors told her not to worry, that it
was just stress.
But it wasn’t. It was the very early signs of a dementia called
Frontotemporal Disease (FTD), which hits people in their 40s and 50s – and
sometimes younger. Click the image to view Susan’s story.
Early detection matters.
Know the early signs of FTD.
2. LIVING WITH FRONTOTEMPORAL DISEASE
This ebook and the documentary, “Planning for Hope: Living with Frontotemporal
Disease,” were created by patients and caregivers to help you recognize the
early signs of FTD. It is not meant to be a diagnostic tool but rather a resource
that helps you give information to your doctors.
CONTENTS
A personal message from Susan Grant
The diagnosis of FrontoTemporal Disease
Early signs: What if it’s not stress?
Preparing for your doctor appointments
Mayo Clinic: PET Scans of neurodegenerative diseases
Becoming your own best health advocate
Alzheimer’s Organization’s “Principles for a Dignified Diagnosis”
A few of our favorite resources
Dedication page
Early detection matters.
Know the early signs of FTD.
3. A PERSONAL MESSAGE FROM SUSAN GRANT `
DEAR FRIENDS
A client wrote this on my retirement poster, “The legacy of your caring and
commitment will be part of hundreds of families’ lives for generations to come.
You will be in our hearts and thoughts.”
It was touching as I now think that I will not be able to continue what I loved.
Now the lights in my in are growing dimmer. This disease takes me down in huge
steps. I grieve as each mental capacity is stolen away. Dr Qualls, Phd. University
of Colorado, says in the film People fear losing their cognitive abilities more than
death. But I have found a new passion that is driving my spirit, and that is
producing a documentary film about my disease. Click here to watch a short
trailer for the film.
A friend asked me why I thought that I could produce a documentary. I said that
there hasn’t been much that I have tried and was not successful doing. That isn’t to
brag, but to say that passion leads you places to learn, achieve, produce, and finish
what you are to do.
The documentary, “Planning for Hope: Living with Frontotemporal Disease,” is not
for me, but for my nieces and nephews, and the many friends I have made, who
share the misery. Most importantly, I hope to reach people who have an inkling
that something is changing in their brain. Click here to PLEDGE to find out if you
are at risk for FTD.
Often FTD is not diagnosed until quite late in the disease process. This is not to say
that the researchers are wrong, but people find skills to compensate for perhaps
several years until it gets very obvious. It is important that healthcare providers
listen to people who report cognitive difficulties and make rapid referrals so that
a definitive diagnosis can be made, and the appropriate medical and cognitive
therapies started. With early treatment and support, people living with FTD may
be able to maintain cognitive functioning longer and remain viable members of
society, i.e., jobs and families. Click here to watch a trailer on FTD early diagnosis
and symptoms.
Live fast, love lots, and protect the dignity for those who have no choice!
– Susan Grant,Cindy Dilks, and Jim Coyle
Co-producers, “Planning for Hope: Living with Frontotemporal Disease.”
Early detection matters.
Know the early signs of FTD.
4. THE DIAGNOSIS OF FRONTOTEMPORAL DISEASE
Susan had always considered herself a
fast thinker. She was a businesswoman
with a successful financial planning
practice and a head for numbers. So in
2003, when she began to notice that
“something wasn’t quite right in her
brain,” she started the journey from
doctor to doctor in what turned out to
be a year of relentless pursuit to get a
definitive diagnosis.
Armed with a diagnosis and renewed tenacity, Susan then set upon a mission to
raise public awareness for Frontotemporal Disease (FTD). In 2007 she launched a
grass-roots organization, Planning for Hope.
Volunteers from Planning for Hope have partnered with physician specialists and
professionals in the areas of clinical research, patient advocacy, elder care law,
financial and estate planning, and other specialized areas to create this eBook
and a documentary film, Planning for Hope: Living with Frontotemporal Disease.
Click here to Watch our Film.
Our mission is to make people aware of the early signs of FTD so that they get
diagnosis and treatment early on. Early detection can make the vital difference
between a life well-lived with FTD and one of suffering. Please Click here to
PLEDGE to find out if you are at risk for FTD.
TO USE THIS EBOOK
Early detection matters.
Know the early signs of FTD.
5. EARLY SIGNS: WHAT IF IT’S NOT STRESS?
Do you have an inkling
that there is something
changing in your thinking?
• Is it becoming hard at times to find a word, or do you stop in the middle of a sentence
forgetting the end... but you’re only 40 years old and at the peak of your career?
• Has your ability to concentrate declined? Does your mind wander in meetings and you
have to actively focus? Do you struggle at times to prioritize getting things done? How
is your multi-tasking?
• Do you find yourself being indecisive? Has anyone said you are not communicating
clearly or that you take too long to get to the point?
• Do you get over-stimulated in crowds like the airports or grocery stores? Do you have
much more angst (anxiety) than before? How is your sleep?
• When trying to think do you now find yourself distracted or annoyed by background
noise from radio, TV, people talking? And when it quiets down do you feel at ease?
• Do you frustrate more easily. Are you wanting to yell or have outbursts when you never
did before?
• How is your driving? Are there times you can't find your way to a familiar place? Do you
hesitate at a stop sign not knowing which way to turn?
• More often are you misplacing items or you forget what you went to get, until you
retrace your steps.
• Have you lost passion and drive and feel like a slow motion version of your former self?
Do you feel like have intermittent brain fog?
These may be the very early warning signs of Frontotemporal Disease* (FTD). But because
FTD is often misdiagnosed, your symptoms may be dismissed as the normal signs of aging,
or due to stress, menopause, or something else to be taken lightly. Calling them senior
moments only puts off the diagnosis! A diagnosis delayed is a diagnosis denied.
Doctors send patients on their way, saying they will check it at the next yearly exam. The
sad fact is that FTD is not diagnosed until late in the disease process.
If you have an inkling that something is changing in your brain, both our ebook and
Planning for Hope documentary film will aid you in getting a definitive diagnosis.
Early detection matters.
*These examples are not inclusive of all symptoms.
Know the early signs of FTD. Your symptoms may differ.
6. PREPARING FOR YOUR DOCTOR APPOINTMENTS
We must listen to our own
bodies, and then get the
physicians to listen, too, and
believe us!
Preparing for your doctor visits will improve the discussion about your specific
symptoms. The goal of meeting with your family physician is to get a referral to a
Neurologist that knows/specializes in Neurodegenerative Diseases. Spend some time
looking up those in your area. Look at the research they are doing.
Start by watching “Planning for Hope: Living with Frontotemporal Disease.” View the
film, free, in its entirety at www.youtube.com/user/FTDPlanningForHope or buy the
DVD at ftdplanningforhope.com/order-the-dvd ($20 plus shipping). It is my hope that
you may want to buy a copy for your family physician neurologist, other family
members. Together we can find hope. I hope the many researchers get copies for
the patients and families. In 2003, there was only one book about FTD.
With rare diseases such as FTD, many doctors do not recognize the very early signs. We
learned this by surveying people on the FTD Support Forum www.ftdsupportforum.com.
Take a moment to circle those symptoms on the prior page that seem to be what you
are experiencing. Be sure to add others that may not be on the list.
Know what it is not. Many symptoms vary from person to person. No two people are
the same. Many of brain diseases eventually look the same as the disease progresses
into the very late stages. If you get an early diagnosis, you can be involved in many
of the decisions about your own health care
The problem with cognitive tests: They often don’t detect problems in well-educated
people or people in the early stages. More sophisticated testing is necessary to
make an accurate diagnosis.
Getting an early diagnosis is imperative. This can give you precious time to get your
treatment and your affairs in order. Early intervention perhaps will slow the decline of
your cognitive functioning. A diagnosis also allows you to take disability from your
job, rather than many people eventually gets fired due to declining performance
and thus does not get the retirement benefits provided by the employer.
A diagnosis of Mild Cognitive Impairment (MCI) can precede FTD or Early Onset
Alzheimer’s Disease. MCI is a qualifying disability if you are unable to work. If you
have a disability insurance plan, either through your employer or by purchasing a
7. private policy, you will be able to activate the payments. Click here to watch a
trailer on financial planning.
Don’t settle for just any doctor -- your family doctor or the Neurologist -- suggesting
that you wait until next year to see if you have declined significantly. Get another
opinion right away. Switch doctors until you find one who will give you a definitive
diagnosis. Pet Scans are critical. If you are on Medicare, they will pay for them. FTD is
under the government plan called a Compassionate Allowance. With a clear
diagnosis, you can literally get SSDI within months.
Finding a Neurologist (that specializes in Neurodegenerative Diseases.) Spend some
time looking up those specialists in your area. Look at the research they are
conducting. It may be necessary to travel to your nearest major city for a large
medical center. The Association for Frontotemporal Degeneration (AFTD) has a list of
US medical centers with FTD programs. (www.theaftd.org/support-resources/us-
regions) to access the list.
Be ready to tell your doctors the reasons that you do not believe that you have the
following common misdiagnoses:
Stress is the most common one. Today people work more hours, sleep less, fill their
days to the max, and this can explain your symptoms as burn-out. But you have
probably lived with this for several years. It isn't burnout from working too much.
The key is: What has changed?
Part of the Normal Aging Process – Realize there is a disparity in literacy between you
and your doctor. You may tell your doctor that you are having memory problems.
But what you really may be experiencing is a word finding skill. This distinction is
important! FTD affects the frontal lobe (front of the brain) which controls “executive
functioning.” Executive functioning is the cognitive process that regulates your ability
to organize thoughts and activities, prioritize tasks, manage time efficiently, and
make decisions. Why is this so important? You are not having senior moments
(memory lapses) and this is not normal aging.
Menopause - Easy to say, but menopause does not a fit as a diagnosis for a cluster
of cognitive-related symptoms.
Depression or Anxiety - Many doctors use a questionnaire to determine if depression
and/or anxiety is presenting. Either one or both depression and anxiety may be
present, but they are symptoms of FTD and not the systemic cause of it.
Mental Illness - Be aware that doctors may keep other symptoms in the backs of
their minds without telling you what they suspect. Doctors often will not mention
Bipolar Disorder and other mental illnesses until they are free of any doubt.
A common long-time misconception that you need to be aware of:
People don’t know that they have dementia. Researchers call it “insight”
meaning that the patient doesn’t know anything is wrong. This has been a
belief for many years, even with Alzheimer’s Disease. While it is true that some
8. patients are not aware that they are ill, many patients are aware that
something is wrong or changing with their thinking.
Interviewing Doctors: Remember that a diagnosis delayed is a diagnosis that is
denied!
You’ve probably heard the saying that you don't know how much someone knows
until you know how much they care.
Diagnosis of neurodegenerative diseases are very complicated. It is a terminal
diagnosis. So very many physicians want to wait to see decline in your brain
functioning.
Don't wait. Get referrals to specialists in the area of dementia. You may need to
travel to a Teaching Hospital.
You may want to know in advance if the will be testing you for the genetic
components that presently exist. I personally think it is a benefit to find those that
give Pet Scans if the various MRIs don’t show anything. Dr Boeve, Mayo Clinic, says "if
an MRI doesn't show anything, then a PET Scan is critical,"
Find out if they will be doing Clinical Trials. These trials aren’t just about the next drug
tested, but many now are working to find the causes of different neurodegenerative
diseases. Science is moving so very fast, you may want to be in one of their trials.
Most of the researching Neurologists meet at least once a year. While the tests may
be free, traveling and hotel arrangements are your expense. To find a list of present
trials at clinicaltrials.gov, Click here.
9. MAYO CLINIC: PET SCANS OF NEURODEGENERATIVE DISEASES
Images provided by Bradley Boeve, MD, and Val Lowe, MD, courtesy of Mayo Foundation for Medical
Education and Research; all rights reserved.
How to Interpret a PET Scan:
A positron emission tomography (PET) scan measures glucose metabolism. For brain PET scans, reduced
glucose metabolism in certain regions represents areas of the brain which are not functioning normally. The
pattern of reduced glucose metabolism on PET is highly consistent with certain key neurologic disorders.
Figures below show colored areas where the glucose metabolism in the brain is abnormal for different
types of dementia
Mild Alzheimer’s Disease Primary Progressive Aphasia Logopenic Subtype
Frontotemporal Disease Dementia with Lewy Bodies
The images on the PET scans below are from a different kind of PET scan (PiB PET scan) that identifies
amyloid protein in the brain (the finding in Alzheimer’s Disease or AD). They show areas of more color
where the amyloid protein is building up in someone with AD versus a normal person.
Normal Alzheimer’s Disease
10. BECOMING YOUR OWN BEST HEALTH ADVOCATE
Can you fight dementia?
Many with dementia die from pneumonia, bronchitis, and UTIs.
Don’t wait for your PCP. Take control of these illnesses yourself.
Track research. I am participating in clinical trials at Mayo Clinic with Dr. Boeve and
Dr. Lowe. Keeping up on new treatments, mutations being discovered that could be
my family’s, rates of decline by Neuropsych tests, and Pet Scans. As part of the
clinical trials, consider donating your brain to Science for research affecting the next
generations.
Actively pursue a good Immune system. Under direction by Dr. Amy Olson, MD at
National Jewish Hospital, who is doing a fantastic job of figuring out how my immune
system can be improved. I also have a great Immunologist, Pulmonologist,
Gastroenterologist, and Speech Therapist. I kept getting pneumonia and bronchitis
several times per year and asked for help in re-building my immune system. She
found these problems and addressed them: Sleep Apnea, GERD, COPD and made
these other suggestions:
Keep Away from Germs. Regular home mold and water tests, air purifiers at home,
on airplanes, hospitals, and other public places. You can buy: filters to cover air vents
on planes, inhalers, strong antibiotics for bronchial attacks, and yearly vaccination.
Incontinence - watch for UTIs with “Test Strips” that have 8 tests, Self-catheterization.
IVIG- Plasma Exchange - I am still considering to build my immune system and it is
getting better. None these things were obvious to me. Finding Dr. Olson has literally
saved my life!
When you read research and find most FTDers die from pneumonia, bronchitis, and
UTIs. So, paying attention to those things helps lengthen those added precious
moments!
Monitor your Health- Life Line Screening, a private company, which I get yearly tests
($200-300 out-of-pocket for Stroke/Carotid artery disease, Abdominal aortic
aneurysm, Peripheral arterial disease, Heart disease, Heart disease risk, Congestive
heart failure, COPD, Creatin, Screening for Chronic Kidney Disease. The internet can
help you choose your team of doctors by experience, check treatment, and check
drug compatibility
Better Living through Chemistry- Treat symptoms: Meet monthly with a Psychiatrist
that usually prescribes and monitors ”mind meds” keeping anxiety, depression, and
a variety of uppers for some of those meds that can be sedating. Supplements- as
various newsletters suggests: Vitron-C High Potency Iron- 65mg Elemental Iron, Ultra
CoQ10 (Qunol form)- 1,200mg, Calcium- 500mg, Vita D-3- 1,400iu, Vita E- 400mg,
Magnesium- 250mg, Omega 3 and Omega 6 Fish Oil- 1,000mg, and Ultimate Flora
BifidoMAX 80 Billion cultures (Probiotic).
11. Exercise your brain. There are many software programs that are being developed
and updated specifically for your area of the brain that needs more help. I have
used Posit Science and Luminosity. Exercise your body. Dementia Researchers
suggest sleeping 10-12 hours.
Fighting stigmas- Attitude is everything. Find others with ideas to compensate as
cognitive abilities decline. Psychotherapist helps deal with our terminal illnesses. Have
a family meeting to discuss long term decisions you have made. You can have a
facilitator there. Under Resources, we list a number of support groups for the patient
and the caregiver. Included next is the "Dignified Diagnosis" produced by
Alzheimer's, who are fighting those same stigmas.
Note that these are my ideas and what has helped me. They do not represent the
views of any doctors or any other organizations. I hope they are helpful to you.
– Susan Grant
13. A FEW OF OUR FAVORITE RESOURCES
DVD/VIDEO
Planning for Hope: Living with Frontotemporal Disease – This is our 1-hour documentary
from co-producers Susan Grant, an FTD patient, and her caregiver Cindy Dilks, which
captures some of the most brilliant researchers exploring early diagnoses for FTD. Patients
share heart-wrenching stories of grief from the loss of skills, capabilities, jobs, and
tremendous financial burden. Financial planners and elder care lawyers discuss
strategies to avoid financial devastation. The film brings Hope as research is moving at a
fast pace.
Watch it free on YouTube: www.youtube.com/user/FTDPlanningForHope
Order the DVD: ftdplanningforhope.com/order-the-dvd
ASSOCIATIONS Inspire Alzheimer’s Foundation of
Association for Frontotemporal America Support Community – an online
Degeneration – offers support and support network for people with various
resources for patients and caregivers. dementias and their families.
Visit AFTD online: www.theaftd.org Visit the AFA community online:
www.inspire.com/groups/alzheimers-
foundation-of-america
Frontotemporal Lobar Degeneration
Association -- provides clinics for FTD
patients to achieve early diagnosis. HealthCentral Alzheimer’s Community –
Visit FLDA online: www.ftlda.org caregiver articles and advice around
Alzheimer’s and other dementias.
Visit the community online:
Alzheimer’s Organization -- provides
www.healthcentral.com/alzheimers
services for those affected by
Alzheimer’s and other dementias.
Memory People™ is a closed Facebook
Visit ALZ.org: www.alz.org
group for people with memory
impairment, offering support,
ONLINE SUPPORT GROUPS understanding, and comfort.
FTD Support Forum – 5,071 members, an Join the group: on.fb.me/Z9Ka4A
online community for people diagnosed
with FTD and caregivers of loved ones
with FTD. FTD Patient Support Group – 49 members.
Join the forum: www.ftdsupportforum.com Started by Howard Glick this group for
people that have been diagnosed with
Dementia Advocacy and Support early stage FTD/dementia
ftdpatientsupportgroup@groups.facebook.com
Network (DASN) – an Internet-based
support group for people with
AlzTalk.org- includes 6 chat rooms: incl
dementia.Visit DASN online:
www.dasninternational.org Kids and Teens, and Dr. Mitch Slutzky
Geriatric Psychologist sponsored by
Frontal Lobe Dementia – 256 members Fisher Center for Alzheimer's Research
seeking others whose loved one suffers Foundation
from--to exchange ideas and for support
www.facebook.com/#!/groups/25038170393 Early Stage Alzheimer's/dementia
/members support group - just started by John
Sandborn. A support group for people
diagnosed with early stage Alzheimer's
Disease or any type of dementia.
14. BOOKS/BLOGS: We are including The Healing Consciousness: A Doctor’s
mostly books about FTD, plus some really Journey to Healing – by Dr. Beth
insightful sites about Memory loss and Baughman DuPree, looks at health care
Early Onset Alzheimer’s. differently by focusing on "healing"
rather than "curing" as our ultimate goal.
Hoffman Family Journal - Bob Hoffman OrdertheBook
http://thehealingconsciousness.com/produc
cared for his wife until her death in 1998. t/healing-consciousness
Gives insight into how FTD affects the
family and spouse:
www.bhoffcomp.com/coping/hoffmann.html Vicki’s Voice Blog - a patient’s personal
blog, sharing her experiences having this
What If It’s Not Alzheimer’s? – edited by disease.
www.vickisvoice.tv
Lisa Radin and Gary Radin, contains 25
chapters full of practical information
that every FTD caregiver needs. Alzheimer's Reading Room is the number
Order the Book: one source of life news and information
www.amazon.com/What-Its-Not-Alzheimers- for the entire Alzheimer's community.
Caregivers/dp/1591025842
Aging Families and Caregiving – by Sara
Take Your Oxygen First: Protecting Your Qualls and S. Zarit, provides guidance for
Health While Caring for a Loved One caregivers, families, and those who
with Memory Loss – by Leeza Gibbons, counsel them on managing caregiving
James Huysmans LCSW, and Rosemary challenges. Order the Book:
DeAngelis Laird M.D. www.amazon.com/Families-Caregiving-
Order the Book: www.amazon.com/Take- Series-Clinical-
Your-Oxygen-First-Protecting/dp/1934184209 Geropsychology/dp/0470008555
Dancing with Dementia -- A woman’s Dying Well: The Prospect for Growth at
story of living positively with dementia. the End of Life – by Ira Byock, former
and Who Will I Be When I Die? – A President of the American Academy of
woman’s story of emotional, spiritual, Hospice and Palliative Medicine, takes a
and physical journey in 3-yrs since pointed look at peace and possibilities
diagnosis. Both books are by Christine at the end stage of life.
Bryden. Order the Book:
Order the Books: www.jkp.com/ www.dyingwell.org/author.htm
Young Hope’s Hand Guide to Dementia Still Alice – by Lisa Genova, sheds laser-
– by Tracy Mobley, answers questions by precise light into the lives of people with
a person with Frontal Lobe Dementia. dementia and the people who love
Order the Book: them.
www.outskirtspress.com/store.php Order the Book: www.amazon.com/Still-
Alice-Lisa-Genova/dp/1439102813
Dementia the Monster Within – John
Herbert van Roekel, offering Create The Life You Need! – by Charles
Understanding and Encouragement for Franklin, Ph.D., LCSW, BCD, helps you to
Caregivers find passion and success with his manual
Order from: SlayTheMonster@gmail.com of simple practices. Order the Book:
http://www.booktopia.com.au/create-the-
life-you-need--dr-charles-franklin-ph-
d/prod9781479219346.html
15. I N H O N O R O F
Frances E. Floystrop
T This ebook is dedicated to Frances Evelyn Floystrop… who did not get an
early diagnosis. Dearly beloved mother, wife, grandmother, great
grandmother, lover of dogs, and photographer -- FTD has robbed us of
the “you” that we knew, but it will never, ever rob us of our love for you.
Although you are still with us, Mom, we miss you dearly. Nary has a day
gone by in these past six years and counting, that I do not shed a tear.
And in each and every tear shed, there are a thousand “I love yous”.
One thousand, two thousand, three thousand… my tears are falling,
again.
I would do almost anything to have you whole and complete.
With all of my love, Cheryl
Advocate, Planning for Hope
Copyright 2012 Planning for Hope, a 501c3 organization. All rights reserved.