“For a long time, I told my M.D. that something was different in my brain.”

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.

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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.

C O N T E N T S 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.

A PERSONAL MESSAGE FROM SUSAN GRANT `

D E A R F R I E N D S 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.

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.

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. Know the early signs of FTD.

*These examples are not inclusive of all symptoms. Your symptoms may differ.

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

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

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.

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

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).

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

DIGNIFIED DIAGNOSIS Principles for a Dignified Diagnosis is the first statement of its kind written by people with dementia on the subject of the Alzheimer diagnosis experience.

In the 2008 report Voices of Alzheimer’s Disease: A Summary Report on the Nationwide Town Hall Meetings for People with Early Stage Dementia, the Alzheimer’s Association identified diagnostic challenges and dissatisfying interactions with the medical community as two major challenges articulated by people living with the disease. These principles are their insights on how to make that experience better.

The Principles for a Dignified Diagnosis include the following:

Talk to me directly, the person with dementia. I am the person with the disease, and though my loved ones will also be affected, I am the person who needs to know first.

Tell the truth. Even if you don't have all the answers, be honest about what you do know and why you believe it to be so.

Test early. Helping me get an accurate diagnosis as soon as possible gives me more time to cope and live to my fullest potential and to get information about appropriate clinical trials.

Take my concerns seriously, regardless of my age. Age may be the biggest risk factor for Alzheimer's, but Alzheimer's is not a normal part of aging. Don't discount my concerns because I am old. At the same time, don't forget that Alzheimer's can also affect people in their 40s, 50s and 60s.

Deliver the news in plain but sensitive language. This may be one of the most important things I ever hear. Please use language that I can understand and is sensitive to how this may make me feel.

Coordinate with other care providers. I may be seeing more than one specialist — it is important that you talk to my other providers to ensure you all have the information so that changes can be identified early on and that I don't have to unnecessarily repeat any tests.

Explain the purpose of different tests and what you hope to learn. Testing can be very physically and emotionally challenging. It would help me to know what the purpose of the test is, how long it will take and what you expect to learn from the process. I would also appreciate the option of breaks during longer tests and an opportunity to ask questions.

Give me tools for living with this disease. Please don't give me my diagnosis and then leave me alone to confront it. I need to know what will happen to me, and I need to know not only about medical treatment options but also what support is available through the Alzheimer's Association and other resources in my community.

Work with me on a plan for healthy living. Medication may help modify some of my neurological symptoms, but I am also interested in other recommendations for keeping myself as healthy as possible through diet, exercise and social engagement.

Recognize that I am an individual and the way I experience this disease is unique. This disease affects each person in different ways and at a different pace. Please be sure to couch your explanation of how this disease may change my life with this in mind.

Alzheimer's is a journey, not a destination. Treatment doesn't end with the writing of a prescription. Please continue to be an advocate — not just for my medical care but for my quality of life as I continue to live with Alzheimer's. Alzheimer’s Association: 1.800.272.3900 www.alz.org Principles for a Dignified Diagnosis © 2009 Alzheimer’s Association. All rights reserved.

This is an official publication of the Alzheimer’s Association but may be distributed by unaffiliated organizations and individuals. Such distribution does not constitute an endorsement of these parties or their activities by the Alzheimer’s Association.

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 Association for Frontotemporal Degeneration – offers support and resources for patients and caregivers. Visit AFTD online: www.theaftd.org Frontotemporal Lobar Degeneration Association -- provides clinics for FTD patients to achieve early diagnosis. Visit FLDA online: www.ftlda.org Alzheimer’s Organization -- provides services for those affected by Alzheimer’s and other dementias. Visit ALZ.org: www.alz.org ONLINE SUPPORT GROUPS FTD Support Forum – 5,071 members, an online community for people diagnosed with FTD and caregivers of loved ones with FTD. Join the forum: www.ftdsupportforum.com Dementia Advocacy and Support Network (DASN) – an Internet-based support group for people with dementia.Visit DASN online: www.dasninternational.org Frontal Lobe Dementia – 256 members seeking others whose loved one suffers from--to exchange ideas and for support www.facebook.com/#!/groups/25038170393/members

Inspire Alzheimer’s Foundation of America Support Community – an online support network for people with various dementias and their families. Visit the AFA community online: www.inspire.com/groups/alzheimers-foundation-of-america HealthCentral Alzheimer’s Community –caregiver articles and advice around Alzheimer’s and other dementias. Visit the community online: www.healthcentral.com/alzheimers Memory People™ is a closed Facebook group for people with memory impairment, offering support, understanding, and comfort. Join the group: on.fb.me/Z9Ka4A

FTD Patient Support Group – 49 members. Started by Howard Glick this group for people that have been diagnosed with early stage FTD/dementia ftdpatientsupportgroup@groups.facebook.com AlzTalk.org- includes 6 chat rooms: incl Kids and Teens, and Dr. Mitch Slutzky Geriatric Psychologist sponsored by Fisher Center for Alzheimer's Research Foundation Early Stage Alzheimer's/dementia support group - just started by John Sandborn. A support group for people diagnosed with early stage Alzheimer's Disease or any type of dementia.

BOOKS/BLOGS: We are including mostly books about FTD, plus some really insightful sites about Memory loss and Early Onset Alzheimer’s. Hoffman Family Journal - Bob Hoffman cared for his wife until her death in 1998. Gives insight into how FTD affects the family and spouse: www.bhoffcomp.com/coping/hoffmann.html What If It’s Not Alzheimer’s? – edited by Lisa Radin and Gary Radin, contains 25 chapters full of practical information that every FTD caregiver needs. Order the Book: www.amazon.com/What-Its-Not-Alzheimers-Caregivers/dp/1591025842 Take Your Oxygen First: Protecting Your Health While Caring for a Loved One with Memory Loss – by Leeza Gibbons, James Huysmans LCSW, and Rosemary DeAngelis Laird M.D. Order the Book: www.amazon.com/Take-Your-Oxygen-First-Protecting/dp/1934184209 Dancing with Dementia -- A woman’s story of living positively with dementia. and Who Will I Be When I Die? – A woman’s story of emotional, spiritual, and physical journey in 3-yrs since diagnosis. Both books are by Christine Bryden. Order the Books: www.jkp.com/ Young Hope’s Hand Guide to Dementia – by Tracy Mobley, answers questions by a person with Frontal Lobe Dementia. Order the Book: www.outskirtspress.com/store.php Dementia the Monster Within – John Herbert van Roekel, offering Understanding and Encouragement for Caregivers Order from: SlayTheMonster@gmail.com

The Healing Consciousness: A Doctor’s Journey to Healing – by Dr. Beth Baughman DuPree, looks at health care differently by focusing on "healing" rather than "curing" as our ultimate goal. OrdertheBook http://thehealingconsciousness.com/product/healing-consciousness Vicki’s Voice Blog - a patient’s personal blog, sharing her experiences having this disease. www.vickisvoice.tv Alzheimer's Reading Room is the number one source of life news and information for the entire Alzheimer's community. Aging Families and Caregiving – by Sara Qualls and S. Zarit, provides guidance for caregivers, families, and those who counsel them on managing caregiving challenges. Order the Book: www.amazon.com/Families-Caregiving-Series-Clinical-Geropsychology/dp/0470008555 Dying Well: The Prospect for Growth at the End of Life – by Ira Byock, former President of the American Academy of Hospice and Palliative Medicine, takes a pointed look at peace and possibilities at the end stage of life. Order the Book: www.dyingwell.org/author.htm Still Alice – by Lisa Genova, sheds laser-precise light into the lives of people with dementia and the people who love them. Order the Book: www.amazon.com/Still-Alice-Lisa-Genova/dp/1439102813 Create The Life You Need! – by Charles Franklin, Ph.D., LCSW, BCD, helps you to find passion and success with his manual of simple practices. Order the Book: http://www.booktopia.com.au/create-the-life-you-need--dr-charles-franklin-ph-d/prod9781479219346.html

I N H O N O R O F

Frances E. Floystrop

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

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Copyright 2012 Planning for Hope, a 501c3 organization. All rights reserved.