The Caregiver Track conference highlighted people living with LBD and their experiences. Last week, our guest blogger, Rosemary Dawson, told us about Susan Williams and what a wonderful advocate for LBD she has become. Today, she tells about the some of the other speakers.
Laura Turner Seydel is a national environmental advocate and daughter of Ted Turner. There has been nothing in the media about Ted Turner and his Lewy journey since his interview with Ted Koppel in September 2018 during which he demonstrated that he knew very little about LBD, likening his case to a "mild case of Alzheimer's ... but not nearly as bad ... Thank goodness, I don't have that.”
Laura told a different story. We appreciated her candor in describing her father's Lewy journey and the information she shared that shows that his family has a better understanding of LBD than he expressed in that interview. Our hope is that Laura will be another vocal LBD advocate and that her presentation at the conference will be the first of many efforts by Ted Turner's family to bring awareness of the disease that afflicts him.
Ted was diagnosed only a few years ago but Laura tells how he experienced RBD (REM sleep behavior disorder, or Active Dreams) way back when he was still married to Jane Fonda. (They were divorced in 2001.) Ted, who celebrated his 80th birthday in 2018, appears to be doing fairly well. Although he tires easily and has problems with short term memory, he stays active. He particularly wants to continue to ride horses on his Montana ranch although his parkinsonism makes this difficult and dangerous. This desire motivates him to do yoga every day (with his private yogi). The yoga strengthens his core and helps his flexibility, which allows him to ride and has other benefits as well.
Don and Cynthia Kent were very effective in presenting what life is like for those who live with LBD and for their spouses. They illustrated the challenges, but also the rewards and demonstrated that people can live well with Lewy. Don Kent is a retired lawyer from Tyler, TX; Cynthia is a retired judge who still practices law. They shared their life pre-Lewy, the early symptoms, the diagnosis, and how they are trying to live well with Lewy. Don was candid that before he had a diagnosis, he had thoughts of suicide which sent them to the Mayo Clinic where he was diagnosed with LBD. These two short videos are both well worth watching., one of Don talking about his LBD journey and one about the couple's activities in making Tyler a dementia friendly community You can also read about them in this article. https://tylerpaper.com/lifestyle/health/tyler-attorney-don-kent-faces-lewy-body-dementia-diagnosis-with/article_2f7ba26d-78f7-5413-bbd7-6fe279abc786.html and
https://www.youtube.com/watch?v=9eL9qfMZW48&feature=youtu.be
https://www.kltv.com/2019/02/22/tyler-becomes-only-second-texas-city-recognized-dementia-friendly-community/
This was my third time meeting Don and Cynthia. They are doing so much to spread awareness and educate people. Truly inspiring that they are doing this while facing the ups and downs of life with Lewy.
Robert Bowles is a retired pharmacist from Georgia. Since being diagnosed with LBD at the age of 64, Robert has been tireless in his efforts to bring awareness to LBD, to support those living with Lewy, and to bring all of the LBD stakeholders together to tackle the many facets of LBD. Robert talked about “A Life Reexamined.” He recalled how when he was in the throes of REM sleep behavior disorder (RBD) and terrible hallucinations, he wanted to give up and die, but he believes that God told him that He was not done with him yet. Robert talked about how he tries to share the principles that guided him before Lewy: Love, care, education, encouragement, and hope. And he talked about his acronym ASAP: Acceptance, Socialization, Attitude, and Purpose. I encourage you to read more about Robert, his life with Lewy, and his work. His video is worth watching too. You can see a video of Robert at https://www.youtube.com/watch?v=swY9zTsySKA
See also http://dementiajourney.org/tag/dementia-action-alliance/ and https://www.lbdlivingbeyonddiagnosis.com/index.html
It is my honor to serve with Robert Bowles on the Living with Lewy Advisory Council which is largely the result of his persistence in advocating for such an entity.
Josh and Emily Ohde talked about their ongoing support for Josh’s father, Larry, who has LBD. Josh’s mom died, so his dad’s care fell to him and his wife, Emily. They relocated Larry with them from Kentucky to Rochester, Minnesota. Larry lives in a long-term care facility only a few minutes from where Josh and Emily live, so they spend time with him every day, often taking him out to explore their new environment. Their presentation highlighted how family members can continue to be very active care partners and advocates for their loved ones with LBD when the person is an LTC facility.
Our next blog will describe an experimental drug we learned about at the conference.
For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.
No comments:
Post a Comment