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"Living with Frontotemporal Disease" e-book


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"Living with Frontotemporal Disease" e-book

  1. 1. “For a long time, I told my M.D. that something was different in my brain.”S usan 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. Susans 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. 2. LIVING WITH FRONTOTEMPORAL DISEASEThis ebook and the documentary, “Planning for Hope: Living with FrontotemporalDisease,” were created by patients and caregivers to help you recognize theearly signs of FTD. It is not meant to be a diagnostic tool but rather a resourcethat helps you give information to your doctors.CONTENTSA personal message from Susan GrantThe diagnosis of FrontoTemporal DiseaseEarly signs: What if it’s not stress?Preparing for your doctor appointmentsMayo Clinic: PET Scans of neurodegenerative diseasesBecoming your own best health advocateAlzheimer’s Organization’s “Principles for a Dignified Diagnosis”A few of our favorite resourcesDedication page Early detection matters.Know the early signs of FTD.
  3. 3. A PERSONAL MESSAGE FROM SUSAN GRANT ` DEAR FRIENDSA client wrote this on my retirement poster, “The legacy of your caring andcommitment 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 hugesteps. I grieve as each mental capacity is stolen away. Dr Qualls, Phd. Universityof Colorado, says in the film People fear losing their cognitive abilities more thandeath. But I have found a new passion that is driving my spirit, and that isproducing a documentary film about my disease. Click here to watch a shorttrailer for the film.A friend asked me why I thought that I could produce a documentary. I said thatthere hasn’t been much that I have tried and was not successful doing. That isn’t tobrag, but to say that passion leads you places to learn, achieve, produce, and finishwhat you are to do.The documentary, “Planning for Hope: Living with Frontotemporal Disease,” is notfor me, but for my nieces and nephews, and the many friends I have made, whoshare the misery. Most importantly, I hope to reach people who have an inklingthat something is changing in their brain. Click here to PLEDGE to find out if youare at risk for FTD.Often FTD is not diagnosed until quite late in the disease process. This is not to saythat the researchers are wrong, but people find skills to compensate for perhapsseveral years until it gets very obvious. It is important that healthcare providerslisten to people who report cognitive difficulties and make rapid referrals so thata definitive diagnosis can be made, and the appropriate medical and cognitivetherapies started. With early treatment and support, people living with FTD maybe able to maintain cognitive functioning longer and remain viable members ofsociety, i.e., jobs and families. Click here to watch a trailer on FTD early diagnosisand 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. 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 toraise public awareness for Frontotemporal Disease (FTD). In 2007 she launched agrass-roots organization, Planning for Hope.Volunteers from Planning for Hope have partnered with physician specialists andprofessionals in the areas of clinical research, patient advocacy, elder care law,financial and estate planning, and other specialized areas to create this eBookand 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 getdiagnosis and treatment early on. Early detection can make the vital differencebetween a life well-lived with FTD and one of suffering. Please Click here toPLEDGE to find out if you are at risk for FTD.TO USE THIS EBOOKEarly detection matters.Know the early signs of FTD.
  5. 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 cant 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 becauseFTD 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 seniormoments 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. Thesad 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 andPlanning 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. 6. PREPARING FOR YOUR DOCTOR APPOINTMENTS We must listen to our ownbodies, and then get thephysicians to listen, too, andbelieve us!Preparing for your doctor visits will improve the discussion about your specificsymptoms. The goal of meeting with your family physician is to get a referral to aNeurologist that knows/specializes in Neurodegenerative Diseases. Spend some timelooking up those in your area. Look at the research they are doing.Start by watching “Planning for Hope: Living with Frontotemporal Disease.” View thefilm, free, in its entirety at or buy theDVD at ($20 plus shipping). It is my hope thatyou may want to buy a copy for your family physician neurologist, other familymembers. Together we can find hope. I hope the many researchers get copies forthe 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. Welearned this by surveying people on the FTD Support Forum a moment to circle those symptoms on the prior page that seem to be what youare 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 arethe same. Many of brain diseases eventually look the same as the disease progressesinto the very late stages. If you get an early diagnosis, you can be involved in manyof the decisions about your own health careThe problem with cognitive tests: They often don’t detect problems in well-educatedpeople or people in the early stages. More sophisticated testing is necessary tomake an accurate diagnosis.Getting an early diagnosis is imperative. This can give you precious time to get yourtreatment and your affairs in order. Early intervention perhaps will slow the decline ofyour cognitive functioning. A diagnosis also allows you to take disability from yourjob, rather than many people eventually gets fired due to declining performanceand thus does not get the retirement benefits provided by the employer.A diagnosis of Mild Cognitive Impairment (MCI) can precede FTD or Early OnsetAlzheimer’s Disease. MCI is a qualifying disability if you are unable to work. If youhave a disability insurance plan, either through your employer or by purchasing aprivate policy, you will be able to activate the payments. Click here to watch atrailer on financial planning.
  7. 7. Don’t settle for just any doctor -- your family doctor or the Neurologist -- suggestingthat you wait until next year to see if you have declined significantly. Get anotheropinion right away. Switch doctors until you find one who will give you a definitivediagnosis. Pet Scans are critical. If you are on Medicare, they will pay for them. FTD isunder the government plan called a Compassionate Allowance. With a cleardiagnosis, you can literally get SSDI within months.Finding a Neurologist (that specializes in Neurodegenerative Diseases.) Spend sometime looking up those specialists in your area. Look at the research they areconducting. It may be necessary to travel to your nearest major city for a largemedical center. The Association for Frontotemporal Degeneration (AFTD) has a list ofUS medical centers with FTD programs. ( to access the list.Be ready to tell your doctors the reasons that you do not believe that you have thefollowing common misdiagnoses:Stress is the most common one. Today people work more hours, sleep less, fill theirdays to the max, and this can explain your symptoms as burn-out. But you haveprobably lived with this for several years. It isnt 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 youand 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 isimportant! FTD affects the frontal lobe (front of the brain) which controls “executivefunctioning.” Executive functioning is the cognitive process that regulates your abilityto organize thoughts and activities, prioritize tasks, manage time efficiently, andmake 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 clusterof cognitive-related symptoms.Depression or Anxiety - Many doctors use a questionnaire to determine if depressionand/or anxiety is presenting. Either one or both depression and anxiety may bepresent, 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 oftheir minds without telling you what they suspect. Doctors often will not mentionBipolar 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.
  8. 8. Interviewing Doctors: Remember that a diagnosis delayed is a diagnosis that isdenied!You’ve probably heard the saying that you dont know how much someone knowsuntil you know how much they care.Diagnosis of neurodegenerative diseases are very complicated. It is a terminaldiagnosis. So very many physicians want to wait to see decline in your brainfunctioning.Dont wait. Get referrals to specialists in the area of dementia. You may need totravel to a Teaching Hospital.You may want to know in advance if the will be testing you for the geneticcomponents that presently exist. I personally think it is a benefit to find those thatgive Pet Scans if the various MRIs don’t show anything. Dr Boeve, Mayo Clinic, says "ifan MRI doesnt 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 drugtested, but many now are working to find the causes of different neurodegenerativediseases. 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 maybe free, traveling and hotel arrangements are your expense. To find a list of presenttrials at, Click here.Early detection matters.Know the early signs of FTD.
  9. 9. MAYO CLINIC: PET SCANS OF NEURODEGENERATIVE DISEASESImages provided by Bradley Boeve, MD, and Val Lowe, MD, courtesy of Mayo Foundation for MedicalEducation and Research; all rights reserved.How to Interpret a PET Scan:A positron emission tomography (PET) scan measures glucose metabolism. For brain PET scans, reducedglucose metabolism in certain regions represents areas of the brain which are not functioning normally. Thepattern 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 differenttypes of dementiaMild Alzheimer’s Disease Primary Progressive Aphasia Logopenic SubtypeFrontotemporal Disease Dementia with Lewy BodiesThe images on the PET scans below are from a different kind of PET scan (PiB PET scan) that identifiesamyloid protein in the brain (the finding in Alzheimer’s Disease or AD). They show areas of more colorwhere the amyloid protein is building up in someone with AD versus a normal person. Normal Alzheimer’s Disease
  10. 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. 11. Exercise your brain. There are many software programs that are being developedand updated specifically for your area of the brain that needs more help. I haveused Posit Science and Luminosity. Exercise your body. Dementia Researcherssuggest sleeping 10-12 hours.Fighting stigmas- Attitude is everything. Find others with ideas to compensate ascognitive abilities decline. Psychotherapist helps deal with our terminal illnesses. Havea family meeting to discuss long term decisions you have made. You can have afacilitator there. Under Resources, we list a number of support groups for the patientand the caregiver. Included next is the "Dignified Diagnosis" produced byAlzheimers, who are fighting those same stigmas.Note that these are my ideas and what has helped me. They do not represent theviews of any doctors or any other organizations. I hope they are helpful to you. – Susan GrantEarly detection matters.Know the early signs of FTD.
  12. 12. DIGNIFIED DIAGNOSISPrinciples for a Dignified Diagnosis is the first statement of its kind written by people with dementiaon the subject of the Alzheimer diagnosis experience.In the 2008 report Voices of Alzheimer’s Disease: A Summary Report on the Nationwide Town HallMeetings for People with Early Stage Dementia, the Alzheimer’s Association identified diagnosticchallenges and dissatisfying interactions with the medical community as two major challengesarticulated by people living with the disease. These principles are their insights on how to make thatexperience 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 myloved ones will also be affected, I am the person who needs to know first.Tell the truth. Even if you dont have all the answers, be honest about what you do know and whyyou believe it to be so.Test early. Helping me get an accurate diagnosis as soon as possible gives me more time to copeand 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 forAlzheimers, but Alzheimers is not a normal part of aging. Dont discount my concerns because I amold. At the same time, dont forget that Alzheimers 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 everhear. 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 thatyou talk to my other providers to ensure you all have the information so that changes can beidentified early on and that I dont have to unnecessarily repeat any tests.Explain the purpose of different tests and what you hope to learn. Testing can be very physically andemotionally challenging. It would help me to know what the purpose of the test is, how long it willtake and what you expect to learn from the process. I would also appreciate the option of breaksduring longer tests and an opportunity to ask questions.Give me tools for living with this disease. Please dont give me my diagnosis and then leave mealone to confront it. I need to know what will happen to me, and I need to know not only aboutmedical treatment options but also what support is available through the Alzheimers Associationand other resources in my community.Work with me on a plan for healthy living. Medication may help modify some of my neurologicalsymptoms, but I am also interested in other recommendations for keeping myself as healthy aspossible through diet, exercise and social engagement.Recognize that I am an individual and the way I experience this disease is unique. This diseaseaffects each person in different ways and at a different pace. Please be sure to couch yourexplanation of how this disease may change my life with this in mind.Alzheimers is a journey, not a destination. Treatment doesnt 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 Icontinue to live with Alzheimers.Alzheimer’s Association: 1.800.272.3900 www.alz.orgPrinciples 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 organizationsand individuals. Such distribution does not constitute an endorsement of these parties or their activities by theAlzheimer’s Association.
  13. 13. A FEW OF OUR FAVORITE RESOURCESDVD/VIDEOPlanning for Hope: Living with Frontotemporal Disease – This is our 1-hour documentaryfrom co-producers Susan Grant, an FTD patient, and her caregiver Cindy Dilks, whichcaptures some of the most brilliant researchers exploring early diagnoses for FTD. Patientsshare heart-wrenching stories of grief from the loss of skills, capabilities, jobs, andtremendous financial burden. Financial planners and elder care lawyers discussstrategies to avoid financial devastation. The film brings Hope as research is moving at afast pace.Watch it free on YouTube: the DVD: Inspire Alzheimer’s Foundation ofAssociation for Frontotemporal America Support Community – an onlineDegeneration – offers support and support network for people with variousresources for patients and caregivers. dementias and their families.Visit AFTD online: Visit the AFA community online: foundation-of-americaFrontotemporal Lobar DegenerationAssociation -- provides clinics for FTDpatients to achieve early diagnosis. HealthCentral Alzheimer’s Community –Visit FLDA online: caregiver articles and advice around Alzheimer’s and other dementias. Visit the community online:Alzheimer’s Organization -- provides for those affected byAlzheimer’s and other dementias. Memory People™ is a closed FacebookVisit group for people with memory impairment, offering support,ONLINE SUPPORT GROUPS understanding, and comfort.FTD Support Forum – 5,071 members, an Join the group: community for people diagnosedwith FTD and caregivers of loved oneswith FTD. FTD Patient Support Group – 49 members.Join the forum: Started by Howard Glick this group for people that have been diagnosed withDementia Advocacy and Support early stage FTD/dementia ftdpatientsupportgroup@groups.facebook.comNetwork (DASN) – an Internet-basedsupport group for people with includes 6 chat rooms: incldementia.Visit DASN Kids and Teens, and Dr. Mitch Slutzky Geriatric Psychologist sponsored byFrontal Lobe Dementia – 256 members Fisher Center for Alzheimers Researchseeking others whose loved one suffers Foundationfrom--to exchange ideas and for!/groups/25038170393 Early Stage Alzheimers/dementia/members support group - just started by John Sandborn. A support group for people diagnosed with early stage Alzheimers Disease or any type of dementia.
  14. 14. BOOKS/BLOGS: We are including The Healing Consciousness: A Doctor’smostly books about FTD, plus some really Journey to Healing – by Dr. Bethinsightful sites about Memory loss and Baughman DuPree, looks at health careEarly Onset Alzheimer’s. differently by focusing on "healing" rather than "curing" as our ultimate goal.Hoffman Family Journal - Bob Hoffman OrdertheBook for his wife until her death in 1998. ng-consciousnessGives insight into how FTD affects thefamily and Vicki’s Voice Blog - a patient’s personal blog, sharing her experiences having thisWhat If It’s Not Alzheimer’s? – edited by disease. www.vickisvoice.tvLisa Radin and Gary Radin, contains 25chapters full of practical informationthat every FTD caregiver needs. Alzheimers Reading Room is the numberOrder the Book: one source of life news and for the entire Alzheimers community.Caregivers/dp/1591025842 Aging Families and Caregiving – by SaraTake Your Oxygen First: Protecting Your Qualls and S. Zarit, provides guidance forHealth While Caring for a Loved One caregivers, families, and those whowith Memory Loss – by Leeza Gibbons, counsel them on managing caregivingJames Huysmans LCSW, and Rosemary challenges. Order the Book:DeAngelis Laird M.D. the Book: Series-Clinical-Your-Oxygen-First-Protecting/dp/1934184209 Geropsychology/dp/0470008555Dancing with Dementia -- A woman’s Dying Well: The Prospect for Growth atstory of living positively with dementia. the End of Life – by Ira Byock, formerand Who Will I Be When I Die? – A President of the American Academy ofwoman’s story of emotional, spiritual, Hospice and Palliative Medicine, takes aand physical journey in 3-yrs since pointed look at peace and possibilitiesdiagnosis. Both books are by Christine at the end stage of life.Bryden. Order the Book:Order the Books: 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 witha person with Frontal Lobe Dementia. dementia and the people who loveOrder the Book: Order the Book: Alice-Lisa-Genova/dp/1439102813Dementia the Monster Within – JohnHerbert van Roekel, offering Create The Life You Need! – by CharlesUnderstanding and Encouragement for Franklin, Ph.D., LCSW, BCD, helps you toCaregivers find passion and success with his manualOrder from: of simple practices. Order the Book: need--dr-charles-franklin-ph- d/prod9781479219346.html
  15. 15. I N H O N O R O F Frances E. FloystropT his 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 Note that the content of this eBook are my ideas and what has helped me. Unless otherwise indicated, they do not represent the views of any doctors or organizations. I hope they are helpful to you. – Susan Grant eBook logo by willypd / 123RF Stock Photo Copyright 2013 Planning for Hope, a 501c3 nonprofit organization. All rights reserved.