Carl Rinne Lewy Body Dementia Initiative

Our main Center longitudinal study investigates changes in cognitive functioning over time to learn more about normal aging and neurodegenerative diseases. We are looking for adults with or without cognitive changes over the age of 55. This study sees participants in both Ann Arbor and Detroit. Contact Holly Bunker at hlbunker@med.umich.edu or 734-615-5319.

This study aims to understand what changes might predict the end of life in people living with DLB to help patients, caregivers, families, and healthcare professionals know what to expect in the later stages of DLB. The study is looking for individuals with at least moderate stage DLB and their main caregiver, and the caregiver must be able to answer questionnaires related to the DLB and caregiver experience. This study sees participants virtually or by phone. Contact Betsy Posby at blwar@med.umich.edu or 734-358-7370.

The SWELCare study focuses on the daily experiences, well-being, and cardiovascular health of individuals living with a family member or friend who is experiencing cognitive decline. The study team is looking for caregivers and persons with cognitive decline over the age of 18 to participate. No formal diagnosis of dementia is required. This study takes place virtually or by phone. Contact Akari Oya at swelcarestudy@umich.edu or 734-936-7489.

This study aims to understand whether the brain’s serotonin system is a critical modifier of disease burden in Dementia with Lewy Bodies (DLB). The study is looking for interested participants with DLB age 60 or older and not on serotonin medications. This study sees participants in Ann Arbor. Contact Cate Lewis at cathlewi@med.umich.edu or 734-232-1199.

This study investigates new brain imaging approaches that investigators hope will identify protein accumulations in the brain of individuals with Parkinson’s disease-related dementia. The study is looking for adults age 55 and older with Parkinson’s disease dementia, DLB, or AD. This study sees participants in Ann Arbor. Contact Ishita Ghosh at isghosh@med.umich.edu or 734-936-1035. A study flyer is available here.

This study examines the use of transcranial electrical stimulation (tES) as a potential treatment for cognitive challenges in those living with Lewy body dementia (LBD). The study is looking for adults diagnosed with LBD who are over the age of 50. This study sees participants in Ann Arbor. Contact the Functional Neuroimaging, Cognitive and Mobility Lab at PDresearch@med.umich.edu or 734-998-8400.

This support group meets via Zoom on the second Tuesday of each month from 2 - 3 p.m. for caregivers and 3 - 4 p.m. for individuals living with LBD. All caregivers and individuals living with LBD are welcome to attend.

Registration for virtual support groups can be found here.

This support group meets via Zoom on the second Tuesday of each month from 6 - 7 p.m. for caregivers. All caregivers are welcome to attend.

Registration for virtual support groups can be found here.

This support group for caregivers and those living with LBD meets on the second Tuesday of each month from 1:30 - 3 p.m. This group meets at Boyne District Library, 201 E Main St, Boyne City, MI 49712.

Contact Mary Whitlock at marywhitlock51@gmail.com or 231-350-8283 with questions or if you plan to attend.

This support group for caregivers and those living with LBD meets on the fourth Thursday of each month from 2 - 3 p.m. This group meets at Vibrant Life Senior Living, 8100 Geddes Road, Superior Charter Twp, MI 48198.

Contact Renee Gadwa at rgadwa@med.umich.edu or 734-764-5137 with questions or if you plan to attend.

Dr. Melissa Armstrong presents the 4th Annual Carl Rinne Lewy Body Initiative Lecture in conjunction with Neurology Grand Rounds on October 30, 2019.  Dr. Armstrong is the Director of the Mangurian Clinical-Research Center for Lewy Body and Parkinson’s Disease Dementia at the University of Florida. Click here to view the presentation.

Dr. Melissa Armstrong presents the 4th Annual Carl Rinne Lewy Body Initiative Community Presentation at the Kensington Hotel on October 29, 2019.  Dr. Armstrong is the Director of the Mangurian Clinical-Research Center for Lewy Body and Parkinson’s Disease Dementia at the University of Florida. Click here to view the presentation.

Dr. Bradley Boeve presents the 3rd Annual Carl Rinne Lewy Body Initiative Professional Presentation in collaboration with U-M Neurology Grand Rounds on October 24, 2018. Dr. Boeve is the Little Family Foundation Professor of Lewy Body Dementia at Mayo Clinic in Rochester, Minnesota. Click here to view the presentation.

Dr. Bradley Boeve presents the 3rd Annual Carl Rinne Lewy Body Initiative Community Presentation at Huron Woods Retirement Community on October 23, 2018. Dr. Boeve is the Little Family Foundation Professor of Lewy Body Dementia at Mayo Clinic in Rochester, Minnesota. Click here to view the presentation.

Dr. James Leverenz presents the 2nd Annual Carl Rinne Lewy Body Initiative Lecture in conjunction with Neurology Grand Rounds on October 18, 2017.  Dr. Leverenz is the Director of the Cleveland Lou Ruvo Center for Brain Health, and the Joseph Hahn, MD Endowed Chair of the Cleveland Clinic Neurological Institute. Click here to view the presentation.

Dr. Carol Persad presented "Lewy Body Disorders" at the University of Michigan Udall Center's Parkinson's Disease & You Symposium on October 30, 2015. Dr. Persad is a Clinical Professor and the Director of the Neuropsychology program at the University of Michigan. Click here to view the presentation.

A place to provide support and guidance as well as share information and resources. Membership is limited to care partners of those living with Lewy body dementia. Click here to access.

A place to provide support and guidance as well as share information and resources. Membership is limited to those living with Lewy body dementia whether diagnosed or seeking a diagnosis. This group also offers a weekly virtual Zoom based support group. Click here to access.

Living together with Lewy is an LBDA-sponsored Facebook support group for those living with Lewy body dementia (LBD) and their care partners. The goal of this group is to meet the needs of people who are newly diagnosed with LBD, those who have early symptoms of LBD, and those who anticipate a diagnosis of LBD. In addition to providing understanding and support to one another, members focus on topics such as maintaining independence, collaborating on care decisions, and promoting living well despite LBD. Both people living with LBD and their care partners are encouraged to join to unite into one group with mutual respect and shared insights. Click here to access.

An internet discussion forum support group for those whose husband or wife is living with one of the Lewy body disorders: Dementia with Lewy bodies (DLB) or Parkinson's Disease Dementia (PDD). Click here to access.

The Michigan Parkinson Foundation offers both a power movement class and an adapted yoga class virtually for individuals with Parkinson’s. Available here.

This channel can serve as your home base for online PD exercise since it hosts a large number of pre-recorded classes that you can watch and follow. There are archived classes that feature tai chi, yoga, interval training, kickboxing, chair exercises, and more. Additional classes will be added over the next few days and weeks, so keep checking back. Available here.

This group offers specialized dance classes to people with Parkinson’s, their families, friends, and care partners, typically held in person in eight locations around New York City. Since the in-person classes have been suspended due to the COVID-19 outbreak, Dance for PD is offering both free live classes (via Zoom) as well as a multitude of archived classes online for free. Check out the schedule and links for the live online classes, as well as the archived classes here.

The Jamestown, New York YMCA has two short instructional online videos demonstrating Moving for Better Balance, a fall prevention program (Part I and Part II). Parts I and II take approximately 15 minutes if done together.

Part I is available here.

Part II is available here.

This webpage contains seven Parkinson’s exercise videos, including a warm-up, lunges, tai chi, aerobics and agility, boxing, Parkinson’s boot camp, Pilates and, yoga. Note: to access the videos you must click on ‘Read More,’ then scroll down on the subsequent page to find and start the video. Click here to access.

Online streaming (and archived) 45-minute yoga classes, taught by Renee Le Verrier, a certified yoga instructor and a person with Parkinson’s, focused on areas particular to Parkinson’s. Supports: chair, wall, cushion, block, blanket - aid balance and reduce the fear of falling. Classes include step-by-step movements with variations; cues on how, what, and where to notice yoga’s effects, relaxation techniques, tips to try, and ways to apply yoga to everyday activities. Click here to access.

This archive contains more than 50 short exercise videos in four categories: warm-up, workout, CORE, and stretch. You pick one video from each category and, by the time you’ve done all the exercises as many times as recommended, you have done a complete workout at home. Additional videos include exercise ideas, motivation, tips and tricks, and challenges, as well as Rock Steady Boxing event videos and personal stories. Available here.

Ruth Davidson Hahn and Company specializes in Dance for Parkinson’s and Movement & Music classes. In light of COVID-19, the company has created a video archive of Parkinson’s dance classes found here.