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October 19, 2011

Mayo Clinic Patient Creates Documentary to Educate Others on Frontotemporal Dementia

By Elizabeth Rice

Susan Grant and Cindy Dilks from "Planning for Hope" and Val Lowe, M.D., Mayo Clinic Department of Radiology, examine Susan's PET Scans.

In Frontotemporal Dementia (FTD), areas of your brain (the frontal lobe and temporal lobe) shrink, causing progressive speech, language, personality and behavior problems, as well as a decline in your thinking and reasoning skills (cognitive skills). It is often misdiagnosed as a psychiatric problem or as Alzheimer's disease, but FTD tends to occur at a younger age than does Alzheimer's disease, typically between the ages of 40 and 70.

Susan, a Mayo Clinic patient diagnosed with FTD, has created a 1-hour documentary film to educate others. In her words, "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, it is aimed at unveiling the truth about Frontotemporal Disease, addressing the surrounding issues and controversies, and offering hope to those affected."

In the film, people who suffer from FTD and their families share openly about their struggles, how they deal with the discrimination heaped upon them, their confusion, and their pain. These stories are blended with updates on the latest medical and scientific advances.

Susan says, "Getting a diagnosis of a terminal disease is so very hard, but hopefully through the film, we can help make a difference."

View a 60-second promo for the film below, or go to the Planning for Hope web site to view the full documentary.

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Tags: 2310, 5292, 5335, frontotemporal dementia, FTD, Neurology & Neurosurgery, Neurology & Neurosurgery

Just watched Planning for Hope. My 88 yr old husband has FTD. Cannot speak or write, losing ability to walk. Working as engineer at age 81. Diagnosed at 84. Multilingual. No family history.


How does the care giver (wife) know when its time to go to nursing home for patient to live.


This is a very good question and one I do not have a great answer for. I suppose the time for a nursing home comes when it is either unsafe for the patient to remain at home or when the stress of taking care of the patient becomes detrimental to your health. I imagine it is hard to make such a decision and I hope you have a support network that can help you make it. Please do remember, putting your husband into a home does not mean you are abandoning him, it means you love him so much you want to ensure he has the proper care.

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