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Poem Inspired By Disease – Matter of Fact

Matter of Fact

By Ron Louie, MD

Her face was matter of fact when she heard the pronouncement. 

The neuropsychologist was her colleague; he remained professional, but slipped in some sympathy with the data, which I could not appreciate.

She didn’t display a mask of depression, or Parkinson disease.

Her face remained pliable, not pleased, but neither terribly pained, no exhibition of perplexity, or petulance, or surprise, a pensive look, retaining its complex grace, a quiet reserve, a solemn alertness, the beauty of humane consciousness, with no further expectations.

In her own practice, she had encountered early Alzheimer disease first hand:

that wonderful younger woman, whose baby she had delivered, working in accounting until the numbers became exotic, then alien; she had told me about that patient, with shock, sadness, and resignation.

But I didn’t understand this. I wouldn’t. It was the guy, his tests, the setting.

At home, I made her try to draw a clock, count backward, recite words, and copy intersecting rectangles.  She tried, this good doctor who had always bested me in calculus, organic chemistry and marriage.  She wasn’t angry.

So how could I be mad? She was setting the example, as she had done her whole life, her whole career, without pessimism or regret, or fanfare, just ready to go on, even though her words and steps might mutate, unpredictably, ever aware of the possible endpoints, with each of us now grappling this present moment, trying to recognize its identity.

Dedicated to IRJ, MD; suggested by Meryl Comer

Neurology® 2018;90:139. doi:10.1212/WNL.0000000000004841

Listen above to Dr. Louie read this poem. 

 

 

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See what LeadingAge has to say about Lori La Bey.

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Many attendees commented that she was one of the best speakers they had heard.” 

Pat Sylvia, Director of Education & Member Development LeadingAge Washington

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What’s New in Dementia?

What’s New in Dementia?

on Alzheimer’s Speaks Radio

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Tuesday we have Peter Rabins, MD, MPH, who is the Author of “The 36-Hour Day.”  He is a professor of the practice in the Erickson School of Aging Management Services at the University of Maryland, Baltimore County. He was the founding director of the geriatric psychiatry program and the first holder of the Richman Family Professorship of Alzheimer Disease and Related Disorders in the Department of Psychiatry and Behavioral Sciences of the Johns Hopkins University School of Medicine.

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Contact Information For Dr Peter Rabin

https://jhupbooks.press.jhu.edu/content/36-hour-day 

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Alzheimer’s Speaks Radio – Join Us to Discuss Dementia/Care Farms Plus The Author Of “Don’t Leave Yet”

Alzheimer’s Speaks Radio -Tuesday June 23rd, 2015

11am EST, 10am CST, 9am MST,  8am PST and 4pm London Time

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Join Us to Discuss Dementia/Care Farms Plus The Author Of “Don’t Leave Yet”

Welcome to Alzheimer’s Speaks Radio.  We are thrilled you are going to join us. Please know on all of our shows we love to hear from our listeners. So feel free to call in or use the chat box to talk to us.

Today we have Maarten Fischer a Dutch Native who moved to Montana and will explain the concept of Dementia/Care Farms. Maarten has been involved in “Multifunctional Agriculture,” including “Care Farms.” In the Netherlands they are the largest sources of day programs with over 1500 farms empowering  30.000 clients on an annually.   Contact Maarten via:  Website or call  406-752-3697

Also joining the conversation will be Eilon Caspi Ph.D., Gerontologist & Dementia Behavior Specialist. Check his Website or his blog

Our second guest will be Constance Hanstedt author of “Don’t Leave Yet, How My Mother’s Alzheimer’s Opened My Heart,” which was named a finalist in the National Indie Excellence Awards for memoir. Contact Constance

Website        Facebook    

For More Resources on Dementia and Caregiving go to Alzheimer’s Speaks.

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No insurance is needed to participate.

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Beautiful Song on Early Onset Dementia – You Are Here

A Beautiful Song on Early Onset Dementia –

“You Are Here”

Please Share with others.

For More Information on Dementia and Caregiving

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Dementia Chats Educational Webinar Recorded Session – March 10th 2015

Dementia Chats Educational Webinar

Recorded Session – March 10th, 2015

031015_DC_snap_dena_robert_Paulan_robert_eilon click_above_watch_recorded_webinarToday we discussed our healthcare system with our experts living with the diagnosis of dementia.  How do we get doctors and medical professionals to get educated and knowledgeable not only about dementia specific to their specialty, but to  find out and provide supportive services to assist those dealing with the disease.  Many great examples were given and strategies were discussed in this hour long session.

For more information on the Dementia Chats Educational Webinar Series, CLICK HERE

For & Information on Dementia & Caregiving

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WALA’s 20th Annual Spring Conference – Creating a Dementia Friendly Culture

WALA’s 20th Annual Spring Conferencewala MakingMemoriesLogoCreating a Dementia Friendly Culture

There is still time to REGISTER!

I hope you can join us!

 Wednesday, March 18, 2015

12:30 – 4:30 p.m.

Everyone Is Welcome To Attend!

Creating a Dementia Friendly Culture – One Community At a Time: A Panel Presentation

Every person with dementia has the right to live well in their community and everyone- from governments and communities to businesses and individuals – has a role to play in making this a reality. It is now the time for action to improve the lives of people living with this condition. Creating a Dementia Friendly Community focuses on improving inclusion and quality of life for people with dementia through a high level of public awareness and understanding of dementia.

Dementia Friendly Communities are popping up in every corner of Wisconsin – each with unique characteristics that tap into local interests and talents. While this is a larger cultural issue, learn why assisted living providers are seeing increased census through participation. During this session, panel experts will discuss the barriers people with dementia face in their community and provide you with detailed methods on running a DFC from a global, national, state, and local perspective.

Sponsored by Senior Living University

Meet & Greet Reception – 6:00 – 7:30 p.m.

Let’s play “Memory”! This meet-and-greet will put you in front of more industry leaders and decision makers in one night than you would normally be able to connect within a month. Attendees will not only have the chance to reconnect with colleagues and make new connections, but will also participate in a networking game of “Memory” for a chance at a prize!

Networking reception sponsored by Wipfli LLP

Cash bar service sponsored by M3 Insurance

Download a registration form or register at the WALA Store!

For more information on Dementia and Caregiving

Click Below

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Dementia & Wandering –

What We Need To Know

Live Each Tuesday 11am EST, 10am CST, 9am MST, 8am PST and 4pm London Time

Call in (714) 364-4757(714) 364-4757 or use the chat box to comment

Karen Francis is the owner of “Calling All Angels Geriatric Case Management,” and today we are going to discuss dementia and wandering. Join the conversation and learn safety tips.

Contact Info

KarenCallingAllAngels@yahoo.com

Shishuka Malhotra, MD, is a Board Certified Psychiatrist and Assistant Professor of Psychiatry at Northeast Ohio College of Medicine in Akron-Canton, OH. She has over fifteen years of research, clinical and administrative experience and has conducted more than 70 clinical and experimental trials. She is also the President, Medical Director and founder of Neuro-Behavioral Clinical Research, Inc

Contact Info

Crystal Blackford at Neuro-Behavioral Clinical Research, Inc., 330-493-1118 330-493-1118.

4825 Higbee Ave, NW, Suite 102 Canton, OH 44718

 

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The Taboo Conversation Life or Death with Dementia

The Taboo Conversation

Life or Death with Dementia

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Click above to go to the show. 

Listen live Tuesday Oct 29th, 2013 or later

Live 11am EST, 10am CST, 9am MST, 8am PST, 4pm London time

Today we will devote the full two hour show to a conversation with a variety of people and thoughts of living and dying with dementia.  Should one have the ability to decide when they want to end their life?  If so, when and under what circumstances?  Hear from those living with the disease, care partners, a Doctor, a Hospice Worker, an Attorney and more.  My guess is you are going to be pretty surprised by what you hear during this conversation.  I know I was.

Please note, Alzheimer’s Speaks understands not everyone will appreciate let alone agree with all comments on this show.  So feel free to call in and join the conversation.

Our only rule is that all comments be respectful.

Our goal is to get the topic off the taboo list.  It is our belief we need to learn more about how everyone deals with this diagnosis. What are their needs?  What are their concerns? How can we help live better with dementia?

What questions do you have?  What thoughts of yours do you want heard?  Call in and join the conversation or use the chat box to let us know your thoughts.  (714) 364-4757  or listen in via you computer by CLICKING HERE

Here is additional contact information on our guests:

Frank Kavanaugh    Dr. Frank Kavanaugh

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   866-654-9156

Robert Rivas 

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dr stan termanStanley A. Terman, PhD, MD

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Natural Dying Living Will Cards
My Last Wishes

Check out the 5 short videos on the site

drterman@gmail.com 

 

Derek humphreyDerek Humphry

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email:  ergo@finalexit.org         Website          Final Exit Book 

ERGO’s Advance Directive dealing with Alzheimer’s is at www.finalexit.org/ergo-store under the icon “Control and Choice”

Michael Ellenbogen newest pic 102813Michael Ellenbogen

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On Facebook – search The Michael Ellenbogen Movement

Jim Crabtree- Jim was unable to make the show but this video is worth watching

jim_crabtree_snapp_on_today_showClick Above to Watch the Video 

 Article – http://www.nbcnews.com/health/man-loses-his-wife-father-mother-alzheimers-fatal-8C11033573

I want to also thank our other participants:

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Dean Dotson – living with dementia

Myriam Marquez- living with dementia

Mary Bailey – – living with dementia, who was at the last minute unable to make the show

cathy purghCathy Prugh – who had technical difficulties and had to drop off prior to her time slot.

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What are your thoughts? 

We loved to hear from you!

For more resources check out our website

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Help Build the Dementia Caregiver Care Planning Tool

Dr. Joe Gaugler and Dr. Bob Kane, University of Minnesota Center on Aging

This request is for professionals only at this time.

(In the future it may expand to families and we will let you know at that time.)


We would like to invite you to participate in an important study of family caregiving for persons with memory concerns. We want to gather your input on what types of support strategies are most appropriate for different types of family caregivers of persons with Alzheimer’s disease or a related dementia. In the absence of a strong empirical data base on what types of interventions are most effective for different types of caregivers, we have to rely on expert judgment about what types of care and support are most useful for families in various situations.

Participating in this project involves providing some background information and reading some short cases that describe persons with Alzheimer’s disease with varying caregiving needs and arrangements and suggesting what kinds of help would be most useful. We are asking each participant to do about 25 of these. Our pilot test experience suggest this takes about 15 minutes to complete. All of the information you provide is confidential and not shared with anyone outside of Dr. Gaugler and Dr. Kane.

This work is part of an AHRQ sponsored study (“The Dementia Caregiver Care Planning Tool: Pilot Implementation and Evaluation;” HS020948) to develop a dementia caregiving care planning tool. Your expertise is essential to its success. We know you are very busy but hope you can find time in your schedule to help us with this project.

If you are interested, please email Joe Gaugler (email him directly at gaug0015@umn.edu or respond to him via this message) or call ( 612-626-2485 ) and he can send you the link to the online survey. Also, if you know of anyone who would also be a good or more appropriate choice to complete these survey, please do forward this email invitation along to them or send us their email address to do so if you are comfortable.

If you have questions or concerns, please let Dr. Gaugler know…thanks again for considering!

Sincerely,

Joseph E. Gaugler, PhD
Associate Professor/McKnight Presidential Fellow
Editor in Chief, Journal of Applied Gerontology
School of Nursing, Center on Aging, University of Minnesota

Robert L. Kane, MD
Minnesota Chair in Long-Term Care and Aging
Professor, Health Policy

Check out Alzheimer’s Speaks Collaborative Resource Directory.

If you are not in it now, let’s change that!

It’s FREE to be listed

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