Talking FTD's Podcast

Sharon Hall and Richard Ruben share their tips and tricks to manage an FTD diagnosis.

Sharon Hall is joined by Heather Johnson, RN and Kelly Klund, LPN, who work with Empira. Empira is based in Minnesota and they educate professionals in long term care. One of their trainings is about behavior expressions. We all need to know about handling behavior expressions.

Sharon Hall is joined by Keri Allen, whose father was misdiagnosed 5 years but had bvFTD. She is also a board member of the new non profit Hot Shot Challenge. This new entity will strive to help FTD families and support targeted research as its own non profit.

Her husband, Ben Allen, PhD, who loves data, was determined to cut down diagnosis time. He has created an algorithm that can detect brain atrophy in a CT before the naked eye can detect it. His company is The Algernon Project. Check out the Instagram page at @algernonproject to learn more.

Most of us see our primary care when things change in our FTD person. A CT is ordered to eliminate tumors, etc., but a CT is not the best at detecting atrophy. The result comes back from radiology as "normal" because they were looking for tumors or cancer. This begins our long journey to diagnosis due to our first misdiagnosis.

Sharon Hall is joined by Farrah Daly, MD, a neuropalliative medicine physician. This informative podcast has so much good information on neuropalliative, palliative care and hospice specifically for neurodegenerative diseases. This is a must listen.

Sharon Hall is joined by Laura Mitic, PhD, the Chief Scientific Officer at The Bluefield Project to Cure FTD. We talk about the research, biomarkers and what The Bluefield Project does.

Lisa Kaufman, MS, CMC, CTRS, C-EOLD is a certified Aging Life Care Manager, and most recently, a certified End of Life Doula. She has owned and operated SeniorCare Options since 2001, and she is an active member of the Aging Life Care Association, and is one of only a handful of certified care managers in Georgia. She has recently been elected to the ALCA Board of Directors, she is a Past-President of the ALCA South Eastern Chapter and is the only Fellow/Certified member of ALCA in Georgia.

She joins me to talk about what an End of Life Doula is and how they fit into your care team.

I am joined by Charlotte, who grew up in an FTD household. Her father was diagnosed when she was 12, but the symptoms started far sooner. She openly and honestly shares her story of growing up not knowing why her Dad, who was Mr. Mom as her Mom worked, was so different than her friend's Dads.

Charlotte and I are looking at making this a series, of sort. We have a deal for her to come and do a podcast when the mood strikes. Let us know if you want more Talking FTD with Charlotte in the comment section, please.

Meet Farrah Daly, MD, a neuropalliative medicine physician. This informative podcast has so much good information on palliative care specifically for neurodegenerative diseases. This is a must listen.

Dr. Borna Bonakdarpour is an Assistant Professor of Neurology for the Cognitive Neurology and Alzheimer's Disease Center at the Ken and Ruth Davee Department of Neurology at Northwestern University Feinberg School of Medicine.

Dr B joined Sharon Hall to discuss how care partners of those with FTD can use music to assist their care.

Please comment on how you use music or how this podcast helped you start using music.

For questions please contact sharonhall419@yahoo.com

Sharon Hall was joined by Dr Leslie Michelle Diaz Ortiz, PhD to explain the process of neuropsych testing and how it puts the puzzle pieces together for an FTD diagnosis.