Wednesday, September 19, 2018

Happy Jewish New Year ― 5779

A ritual is performed at a large, natural body of flowing water (e.g., river, lake, sea, or ocean) on the afternoon of Rosh Hashanah, the Jewish New Year, although it may be performed until Hoshana Rabbah. It symbolizes “washing away your sins.”
Gregory and I would always celebrate the tradition on Yom Kippur not so much to “wash away our sins” but more to contemplate the immensity of life, our place in it, and its fragility. To practice forgiveness of others as well of ourselves. The observation is even more important to me now, as we approach the third anniversary of Gregory’s death, October 4, 2015.









Saturday, September 15, 2018


Every now and then this song comes on
and I take the time to let myself cry and breath
and cry and breath.

Gregory and I first heard this piece when
we were in Tuscany for the first time in 1999.


How Can I Go On

When all the salt is taken from the sea,
I stand dethroned,
I'm naked and I bleed.
But when your finger no longer points the way,
Is anybody there to believe in me,
To hear my plea and take care of me?
How can I go on,
From day to day,
Who can make me strong in every way?
Where can I be safe,
Where can I belong,
In this great big world of sadness?
How can I forget
Those beautiful dreams that we shared.
They're lost and they're no where to be found.
How can I go on?
Sometimes I tremble in the dark.
I cannot see,
When people frighten me.
I try to hide myself so far from the crowd.
Is anybody there to comfort me?
Lord, take care of me.



















Tuesday, September 11, 2018

An Interview with Alzheimer's Speaks Radio and Lori LeBay

You can stream my very successful interview on Blog Talk Radio with Lori LaBey. She is recognized for her work in Alzheimer's by Oprah, Dr. Phil, and Maria Schriver.



Monday, September 10, 2018

Behavioral and Psychological Symptoms of Dementia or Behavior and Psychological Changes Due to Dementia

I have continued to refine my thoughts, as precipitated by friend and colleague Kate Swaffer, on 1) Caregiving Teams, 2) Use of labels, 3) SYMPTOMS due to Dementia/Alzheimer's vs CHANGES due to the disease, 3) Use of drugs for symptoms and changes, and 4) Attending to and respecting the human rights of people diagnosed with Dementia/Alzheimer's.

It is a very complex conversation and I am sure it will continue.


• • • • •


September 10, 2018 

Kate,
I have given much thought to your recent posts on BPSD (Behavioral and Psychological Symptoms of Dementia) and the abolition of such. I have attempted to share comments several times, did a little on one of your posts, but for the most part was overwhelmed by the implications you present and therefore I went into “hyper-thought” to try to make some sense of the situation (at least for myself!)
While I agree with you strongly, and join you in your fight for “Human Rights” for people diagnosed with Dementia/Alzheimer’s, I also feel that I need to clarify in my mind what it is that WE (or at least I) am/are actually dealing with here.
First issue—Good vs Bad People and Caregiving Partners:
There are Good People and Bad People. There are good intentioned people who make bad choices and ill intentioned people who think they are making good choices. And there are people on the continuum between the extremes. 
How caregivers provide care is also on a continuum of good to bad, informed to uninformed, appropriate to inappropriate, etc. These continuums affect how people diagnosed with Dementia/Alzheimer’s are treated and how the care they receive is given.
There is a difference in care given by family and friends vs paid caregivers. There is a difference in care given when the person diagnosed with Dementia/Alzheimer’s lives at home or lives in a memory care facility. How a person receives care differers greatly when they live alone, have no family or have been ignored by family. 
I know that based on the experience of many relatives, the care given in many memory care facilities, is unconscionable and with little respect for Human Rights and more for the facilities convenience, but that does not condemn all such facilities!

Finally, the nature of those diagnosed with Dementia/ Alzheimer’s and the nature of their family caregivers, will determine the reactions and changes and response to being part of the caregiving team. Caregiving teams which are used to RESPECT will most likely continue to operate with respect. Those teams which were ARGUMENTATIVE, DEMANDING, and or INCONSIDERATE will most likely continue to operate in that way.
Second Issue—Good vs Bad Labels:
While labels can be harmful, I believe that they are also useful and necessary. Some say that we should not have to categorize or label and that the labeling itself is part of the problem. I believe that labeling and categorizing can be part of the problem but it is also part of the way in which the human mind comprehends, deals with, and makes decisions with regard to the every day complexity of life!
I believe that labeling must remain flexible, open, nonjudgemental, and subject to careful, continuing scrutiny and the willingness to change.  STEREOTYPING, NO, but understanding our life through categorizing and labeling is how we all make sense out of complicated issues as well as helping us to make every day decisions.

Third Issue—BPSD A Good Label or Bad Label?: 
Using the term BPSD (Behavioral and Psychological SYMPTOMS of Dementia) does MIS-REPRESENT many of the NORMAL HUMAN REACTIONS that people diagnosed with Dementia/Alzheimer’s experience and present. There are changes in behavior which take place, which most likely reflect the confusion and frustration, memory loss, and especially with the loss of language which comes with the disease. I believe that early in the disease, many behaviors incorrectly considered symptoms really are “human nature.” 
But I also believe that at times Dementia/Alzheimer’s DOES have symptoms, especially as the illness progresses, as cognition and language are compromised, as the brain is not able to function as normal. Examples of SYMPTOMS of Dementia are loss of language, forgetting, verbal repetition, hallucination, confusion of past and present, eye/hand coordination, difficulties walking, etc. Getting frustrated and angry because of the inability to explain ones needs is a HUMAN REACTION, messing ones pants is a DEMENTIA SYMPTOM. 

Perhaps there needs to be two sets of labels to differentiate? BPSD (Behavioral and Psychological Symptoms) and BPCD (Behavioral and Psychological Changes?)

Fourth Issue— Human Rights and Use of Drugs:
Use of drugs to support people diagnosed with Dementia/Alzheimer’s is NOT ALWAYS BAD! Sometimes the use of drugs is necessary. It can be beneficial when used after all other options are exhausted, when used in the person’s best interests, when using the lowest possible dosage, and when being monitored carefully.
The first line of inquiry must be finding out the source of desire, need, confusion, frustration, discomfort, or pain. This is especially difficult and time consuming, but absolutely necessary, especially when the person no longer has use of language. Not excusing it but rather stating the reality of it.
Fifth Issue—Human Rights vs Loss of Rights:
I am not living with the diagnosis of Dementia/Alzheimer’s, and while I can empathize, I know that I can never really know what it must be like to slowly loose my cognitive and language abilities, among others. So I can only look at them through the lens of my own “normality” not the lens of one diagnosed with the disease! I can imagine but will never really know!
Through my lens, when the person diagnosed with Dementia/Alzheimer’s can no longer use language to express their needs/desires, when their cognition no longer functions in what we know and experience as “normal,” when issues of safety and maintaining health are at stake, then decisions must be made on their behalf, always of course with their best interests in mind. This arbitrarily means a loss of rights for the person to decide for themselves. 
Sixth Issue—Time and Place:
Each of the previous issues and how they are dealt with depends on the stage of the disease, the behaviors presented, and the care location (home or memory care facility.) In a perfect world we would know when and where and how to work with each with every behavior presented. We would have time and energy to understand the needs even when the person diagnosed can no longer express themselves. However, this is not a perfect world. We can only WORK TOWARDS PERFECTION when it comes to helping human beings live the best life possible.

Seventh Issue—Human Nature/Existence—The Same Only Different!
Due my need to clarify, through GRAY and not BLACK & WHITE, how I look at life and the trials it brings to us and those we love, everything I have talked about above, has to do with doing one’s best to live a loving, active, productive, compassionate, respectful (among other descriptors) life.
When any catastrophic illness or experience strikes, whether Dementia/Alzheimer’s, Cancer, suicide, accidental or sudden death, etc; the true colors of the people involved in the caregiving team and in the drama of life raise to the top. Depending on how the team entered the experience, they most likely will exhibit the same ways of dealing with the situation. Sometimes they are able to raise above their usual. Hopefully, everyone will come through the experience (or at times ending up on the other side of life) in a way that respects and supports all players as deserving human beings.
Maybe the solution, based on the thinking that has helped me put this essay together, is to say: 
"Labeling and medicalizing behavioral and psychological symptoms due to dementia, can be harmful and wrong. Many are not really SYMPTOMS but rather HUMAN BEHAVIORAL RESPONSES which are complicated and at times exaggerated due to the nature of Dementia/Alzheimer’s as it progresses.
Perhaps two labels would suffice: 1) BPSD (Behavioral and Psychological SYMPTOMS of Dementia) and 2) BPCD (Behavioral and Psychological CHANGES with Dementia.) 
Also, we must strive to make sure that if solutions are not obvious and at times not available, if the presenting difficulties are not amenable to usual solutions, then: 1) utmost care must be taken to keep the individual’s human rights in mind when making decisions that affect those rights, 2) such decisions must be in the person’s best interests and not those of other individuals or institutions, 3) such decisions must be loving, respectful, and compassionate and reflect best practices and 4) be the least invasive possible.
We should work on looking for better solutions, provide more support to caregivers and staff, increase staffing so time is available to listen and to look for solutions, and provide more time to training caregivers and staff. 

Know that we can only do the best we can do in caring for people who are at advanced stages of Dementia/ Alzheimer’s and we must always be mindful that no matter what stage, they are human beings who deserve the best care possible!!! We must remember to treat them as we would want to be treated!

Thursday, September 6, 2018

Senior Voices

Approximately 20 Seniors attended today's meeting of "Senior Voices" at the LGBTQ Center on Halsted where I presented "ALZHEIMER'S: A Love Story." We viewed a quick slideshow of Gregory and me "growing up," I made a 15-minute presentation about "Living Well with Alzheimer's," we watched the documentary "ALZHEIMER'S: A Love Story," and there was "Comment/Question/Answer" time afterward. The "thank you's" and mentions of my love for and dedication to Gregory were heartfelt and people also felt comfortable enough to share their "Alzheimer's" and caring for others stories. It felt good to be there!



Tuesday, September 4, 2018

The Term Behavioral and Psychological Symptoms of Dementia (BPSD) Can Do More Harm Than Good

My friend and colleague in the area of Dementia/ Alzheimer's Care, Kate Swaffer, who also has been diagnosed with Dementia in her middle 40's, wrote the following in a recent blog post:

"To say I honestly believe, with every cell in my body, that the notion of BPSD (the Behavioural and Psychological Symptoms of Dementia) as a helpful term, and the labels within it being due to the pathology of dementia, is harmful, is an understatement. I’m sure the term itself is doing harm, to the point it should be removed completely from all dementia policies, programs, and care plans."

Basically, she is talking about the human rights of people diagnosed with the disease and how they are cared for and how their rights are so often violated.



I AGREE, I AGREE ... but ... I feel that we need to go further. We need to qualify and/or to suggest alternatives. I also believe that perhaps we must also acknowledge the changing need to use BPSD language based on the advanced stages of Dementia/ Alzheimer's. I do not know what these alternatives might be but feel that minimally the "qualification" must be acknowledged.

At a certain stage, perhaps it is not a question of a person's rights but rather more their comfort, safety, and the safety of others! These decisions must always be made with the person's best interests in mind and based on "best practices" and available research (often times the interpretation of available research being more complicated in itself.) 

I know that the rationale of comfort and safety are often used as the excuses, but I would prefer to place the blame on the availability of staff time, on staff training, greedy "bottom line" profit facilities, on available research, and on those of us who look for answers to better care not looking far enough!

At times these decisions are not easy ones to make on behalf of another, emotionally or intellectually! But as someone who loved and lived with a person who lived with Dementia/ Alzheimer's, I experienced the need to make these decisions.

In the many presentations I have made on Gregory's and my journey, I too red flag the "medicalization" of the disease in favor of redefining and reestablishing the sense of home, family, and relationship. Towards the end of Gregory's journey, these changes to normalize our situation, reflecting the changes in Gregory's needs, sometimes took place on a daily or hourly basis. Discussing the "medical condition" did not help much.

When Gregory moved to a Memory Care Facility, however, I was faced with many of the concerns which Kate expresses. I negotiated his care, advocated for him, and was involved in all decisions made on his behalf. I was, however, also willing to listen to suggestions, best case scenarios, and to accept the limitations of what the facility was able to do.

I was fortunate that I was able to hire a daycare person to be with Gregory seven days a week from 11:00 to 7:00 pm to provide the social/emotional and additional physical needs which the facility could not provide.

Even though the facility scheduled a head nurse for the unit, two floor nurses, a secretary, custodians, food service people, and more CNAs (certified nurses assistants) than required by the state, there was never enough time to met the real needs of all residents!

They were able to meet the minimal needs but that certainly should not be enough! I also fought for changes within the facility and often helped make change!

While I avoided "medicalizing" our situation, I did need to begin taking the medical into consideration as Gregory's situation worsened, variously including changes and the deminishing of abilities  in the area of cognitive issues as well as physical, mental, physiological, psychological, social, emotional, medical, etc ... and which was complicated by the many ways in which his needs expressed themselves.

I have gone through Kate's list and responded (sometimes offhandedly with no disrespect meant) to her beliefs based on condemning the practices without offering solutions. I know that first, awareness comes, then solutions. But I am always uncomfortable stating something as a truth when under certain conditions it is not a truth. I personally need to at least clarify the possibility both!

Also, I in NO WAY want to diminish Kate's concerns and her noble work to make life as good as possible for those diagnosed. I have great respect and love for this woman. 

Having known her via the internet for the last five years, I had the opportunity to meet her in person (she lives in Austrailia) at the 33rd annual Alzheiemr's Disease Conference, here in Chicago last July, at which we both made presentations. I have come to respect her work even more if that is possbile! 

I need, however, to state my discomfort in "talking problems" without "talking solutions."

Perhaps instead of BPSD, one should talk about changes in BPSD that may or may not come about at the various stages of Dementia/ Alzheimer's!

The following then, in italics, is taken from Kate's BLOG.

IN CAPITALS are my comments. 

Some of Kate's comments should be easy to solve, others are not. I have tried to address both.

  • Labeling and medicalizing normal human responses to dementia is harmful and wrong.
  • AGREED BUT AT VARIOUS STAGES OF DEMENTIA/ ALZHEIMER'S THE ALTERNATIVES ARE NOT OBVIOUS.

  • Labeling and medicalizing normal human responses to being segregated are wrong; this is also a breach of our most basic human right under the CRPD.
  • IS IT NOT POSSIBLE THAT THE "SEGREGATION;" WHICH ITSELF CAN BE INTEGRATED WITH PEOPLE OF VARIOUS SEXES, RACES, RELIGIONS, AGES, ETC; BE A GOOD THING AND HELP CREATE A NEW SENSE OF COMMUNITY WHICH BY ITS NATURE IS MORE COMFORTABLE, PREDICTABLE, AND EASIER WITH WHICH TO COPE?

  • ARE THESE RESPONSES, OFTEN CAUSED BY DYSFUNCTION OR MALFUNCTIONING OF THE BRAIN STILL CONSIDERED BASIC HUMAN RIGHTS? 

  • Labeling and medicalizing normal human responses to being physically restrained is wrong; even people without dementia do not want to be locked up, and this is also a breach of our most basic human right under the CRPD.
  • AGREED THAT PHYSICAL RESTRAINT IS WRONG UNDER ANY CONDITION BUT ARE "LOCKED FACILITIES" WRONG WHEN COMPARED TO A PERSON'S GETTING LOST, HIT BY A CAR, FROZEN TO DEATH IN THE WINTER, THE FEAR OF BEING LOST WHEN REALIZING THEY DO NOT KNOW WHERE THEY ARE (POSSIBLY OUTSIDE IN A NIGHTGOWN OR NUDE?) 

  • IS THE DISCOMFORT AND PAIN IN BREAKING A LEG OR ARM WORTH NOT PROTECTING THE PERSON FROM FALLING DOWN A FLIGHT OF STAIRS OR NEEDING A CHAIR ALARM? 
  • Labeling and medicalizing normal human responses to chemical forms of restraint is wrong.
  • WHAT SHOULD HAPPEN WHEN A PERSON'S QUALITY OF LIFE IS SO PAINFUL DUE TO DEPRESSION? CONFUSION? FRUSTRATION? VIOLENT BEHAVIOR (NOT THAT THE PERSON IS VIOLENT BUT THE EXPRESSION OF THEIR DISCONTENT RESULTS IN HARM TO SELF OR OTHERS?)

  • IN REAL LIFE PEOPLE TAKE TRANQUILIZERS, ANTIDEPRESSANTS, AND ANTIPSYCHOTIC DRUGS WHEN NECESSARY WITH CAREFUL, CAREFUL MINIMAL DOSAGES AND MONITORING. SHOULD THAT NOT BE A RIGHT FOR PEOPLE DIAGNOSED WITH DEMENTIA?

  • Labeling and medicalizing normal human responses to feeling lonely and wanting someone to take notice of you as ‘attention seeking” or ‘a screamer” is wrong.
  • NO ONE SHOULD FEEL LONELY OR NEGLECTED BUT OFTEN TIMES THIS IS THE RESULT OF NEGLECTFUL FAMILIES. 

  • A PERSON SCREAMS FOR A REASON. CARE FACILITY STAFF DEFINITELY SHOULD PAY ATTENTION TO SOMEONE SEEKING ATTENTION, ESPECIALLY WHEN THE PERSON CAN NO LONGER FIND LANGUAGE. THE FAULT IS STAFF NOT HAVING ENOUGH TIME OR ADEQUATE TRAINING NOT NECESSARILY THAT THEY DO NOT WANT TO LISTEN.
  • Labeling and medicalizing normal human response to the need to walk as wandering is wrong; everyone needs and wants to walk!
  • YES EVERYONE HAS THE NEED TO WALK BUT WHAT DO YOU DO WHEN THEY DO NOT RECOGNIZE DANGEROUS SITUATIONS? WHAT WOULD HAPPEN IN THE FACILITY WAS NOT LOCKED?

  • Labeling and medicalizing normal human responses to being ignored is wrong.
  • NO ONE SHOULD BE IGNORED OR HAVE THEIR NEEDS IGNORED BUT WHAT HAPPENS WHEN THE PERSON CANNOT EXPRESS THEIR NEEDS. YES, THERE ARE OFTEN NON-VERBAL SIGNS THAT WILL TELL OF THE PERSON'S NEED. SOMETIMES MEDICAL TESTING CAN REVEAL WHAT IS CAUSING THE DISCOMFORT. BUT OFTEN THERE IS NO OBVIOUS CLUES TO THE UNDERSTANDING OF THE NEEDS. 
  • Labeling and medicalizing normal human responses when someone is unable to communicate their needs or wants is wrong.
  • THIS IS PROBABLY ONE OF THE MOST DIFFICULT SITUATIONS TO OVERCOME AS MENTIONED IN SEVERAL POINTS ABOVE.

  • Labeling and medicalizing normal human responses to untreated pain is wrong.
  • AGAIN YES, YES, YES. I PLACE THE FAULT WITH THERE NOT BEING ENOUGH TIME FOR OR TRAINING OF STAFF TO LEARN HOW TO LISTEN. 

  • Labeling and medicalizing normal human responses to being forced to live in an institution is wrong; we know institutional care ensures poor care, and out of choice, almost no one wants to live in one.
  • AGREED! BUT OFTEN LIVING AT HOME IS NOT AN ALTERNATIVE. MOST OFTEN AT CERTAIN TIMES, LIVING ALONE IS NOT AN ALTERNATIVE. WHAT DOES ONE DO? FAMILY IS NOT ALWAYS AVAILABLE.

  • Labeling and medicalizing normal human responses to being forced to eat with a group of strangers is wrong; when I go to a restaurant, I sit with my family or friends!
  • BEING OFFERED A CHOICE IN SEATING, CHANGING SEATING WHEN NECESSARY, ALLOWING A PERSON TO TAKE THEIR MEAL IN THEIR ROOM, AND ENCOURAGING FAMILY AND FRIENDS TO JOIN MEALS MIGHT HELP WHEN A PERSON IS IN A MEDICAL CARE FACILITY. BUT IS IT BETTER TO PROMOTE ISOLATION THAN IT IS TO FORCE AT TIMES INTEGRATION WITH OTHERS?
  • Labeling and medicalizing normal human responses to being forced to do an activity you don’t like, or don’t want to do, is wrong.
  • NO ONE LIKES TO BE INVOLVED IN SOMETHING THEY DO NOT WANT TO DO. BUT IS IT BETTER TO HAVE NOTHING TO DO? OF COURSE, GIVEN ENOUGH PARAMETERS PERHAPS THE STAFF COULD FIND SOMETHING THE PERSON WOULD WANT TO DO BUT AGAIN THERE IS THE TIME AND TRAINING CONUNDRUM!

  • Labeling and medicalizing normal human responses to being forced to eat food that is spiritually or culturally inappropriate for a person is harmful.
  • AGREED! ALTERNATIVES SHOULD ALWAYS BE AVAILABLE.

  • Labeling and medicalizing normal human responses to not liking the food you are served is also wrong.
  • AGREED BUT MORE DIFFICULT THAN ABOVE. ALTERNATIVES SHOULD BE OFFERED FOR ALL MEALS.
• • • • •

Maybe the solution and one that would sit better with me is to say, 

"Labeling and medicalizing (as BPSD) normal human responses to dementia, can be harmful and wrong. If solutions are not available or obvious, if the presenting difficulties are not amenable to usual solutions, labeling as BPSD and medicalization of normal human responses to Dementia should only be used as a last-ditch effort but should be avoided unless absolutely necessary. 

We should work on looking for better solutions, increase staffing so time is available to listen and to look for solutions, provide more training to staff, but sometimes know that we can only do the best we can do in caring for people who are at advanced stages of Dementia/ Alzheimer's, always being mindful that no matter what stage, they are human beings who deserve the best care possible!!!
Very excited to be featured on Lori La Bey's "Alzheimer's Talk Radio" on Tuesday, September 11 at 1:00 PM. Call in to speak with the host and Michael (323) 870-4602.


TUESDAY, SEPTEMBER 11 AT 1:00 PM


Monday, September 3, 2018

A Window Not a Mirror

"To stand up in front of people and bare your soul is a very difficult thing to do. But if you believe in your story, you must stand up proudly and speak clearly. Life is not a mirror but rather a window. You must keep the glass clean so you can see out and so that people can see in."

This is my version of a quote from the great opera star Dame Janet Baker, who celebrated her 85th birthday this week, and Joyce DiDonato

Education: Past and Present

The days were different, and the students were different ... but all four of us kept up with the changes and were some of the best teachers you might imagine! And our students were some of the best people you might imagine.

In my retirement people comment, "You got out in time, education has changed so much!" My reply is always, "We changed with the times and as the students changed. We didn't notice the difference in a negative way, we just lived and taught in the here and now."


Special Occasions

Sunday, August 26, 2018

Dementia Alliance International

The text of my presentation at the Alzheimer's Disease International Conference here in Chicago was featured in Dementia Alliance International by the organization's president, my friend Kate Swaffer, who lives well with Dementia in Austrailia.

CLICK HERE to see the text. Opens in a separate window.


Sunday, August 19, 2018

Catch Up (While not allowed on Chicago Vienna Dogs ... is Allowed on New York Sabrette's Dogs

Thirteen (13) days since my last post. When Gregory was still alive, especially towards the end of his journey with Dementia (most likely Alzheimer's,) I would write every day on the Alzheimer's BLOG and sometimes several times. I guess the urgency of communicating with someone, anyone; the need to process and document kept me motivated to write.

Now, almost three years after his death (I use the word death rather than "passing" because it makes it more real to me,) my life has settled into a calmer, somewhat simpler, more compassionate, more generous, and mindful way of living.

For the most part, I only do what I want to do rather than what I have to do. I have very few in any concerns, fears, or for that matter unrealistic expectations (at least based on my opinion of what expectations might be :-)

I have plenty of time to work on my numerous projects including constantly refining the condo. I have come to think of "Refining the Condo" as an art form. Make it efficient yet beautiful, make it simple yet complex, display as many of my collections as possible while still having people say, "Your place is so peaceful."


I am working in earnest on the "book" for my in-progress musical called "ALZHEIMER'S: A Musical Love Story." It is a painful process but after several months of writer's block, I now add to it every day. I really believe that the world is ready for a musical like this.

It has three threads woven together in a few hours of entertainment that hopefully, people will actually pay to see, as well as be moved, and experience, and learn! Thread One: A beautiful love story. Thread Two: Living well with Alzheimer's. Thread three: Gay Liberation (since Gregory and I, in our 41 years together, experienced all of the contemporary milestones (and millstones) in the LGBTQ+ community which brought us to this point in history.

I also have an opera, "ALZHEIMER'S: The Opera," up my sleeve. I continue to work on my memoirs, trying to reduce the number of hardback pages from 1,000 to a more reasonable number of pages which someone might actually want to buy and read! There is currently nothing on the market dealing with Alzheimer's and the LGBTQ community.

I have been and will continue to make presentations to the public which tell Gregory and my story of living well with Dementia. It always seems to be engaging to my audiences and well received. Q and A's after the presentations are spontaneous and keep me on my toes, hopefully helping those who ask the questions.

Here is a list of past presentations, future presentations, and ones in the work.

DONE
  1. University of Chicago Middle School Students, the Lieberman Center for Health and Rehabilitation, 
  2. United Methodist Church of LaGrange Illinois
  3. Sherman Plaza Book and Social Club
  4. NorthShore University Health Care System Division of Palliative Care and Hospice
  5. Dementia Alliance International out of Australia
  6. Pritzker School of Medicine - Medical Students Interest Group
  7. Northwestern University Kellogg Graduate School of Business
  8. Great Lakes Alzheimer’s Association
  9. Battle Creek Congregational Church. 
  10. Pride Film & Plays “An Evening with Michael and his Alzheimer’s Love Story”
  11. Pritzker School of Medicine II - Medical Students Interest Group
  12. 33rd Annual Alzheimer’s Disease International Conference - Chicago
  13. Proud Seniors Greece - May 2018 - Athens
  14. Teepa Snow Online Newsletter July 2018
FUTURE
  1. Evanston Art Center - June 2019
  2. Center on Halsted - Senior Voice Group - Sept 6, 2018
  3. Lori La Bay - “Alzheimer’s Speaks Radio.” - Sept 11 - Live, Sept 13 Re-broadcast
  4. Keynote speaker and break out session leader for MAYO Clinic and MN-MD Conference - March 2, 2019 - Minneapolis, MN
POSSIBLE
  1. Evanston Unitarian Church 
  2. Article in Anthology
  3. JT and his documentary on Alzheimer’s
  4. KAREFIRST
  5. Intentional Caregiving Inc
  6. DePaul University
  7. Northwestern University's Buddy Program for Dementia
  8. Rush Presbyterian St Luke
My recent trip to NYC after many many years was a "trip." I got to spend a wonderful lunch with a friend from college whom I have not seen nor talked to in some 30-35 years. We still had a lot in common and many wonderful memories. We also had some not so wonderful memories as we remembered all the friends we lost to HIV/AIDS during the heat of the epidemic of what was called "The Gay Disease!"

Really enjoyed the musicals "Dear Evan Hanson" and "The Band Visits." Enjoyed the legitimate theater "Boys in the Band" and "Harry Potter and the Cursed Child." 






Enjoyed a slice of "New York Pizza" (flat crust) and a hot dog (definitely not Vienna Kosher) from a street vendor. Visited the new Whitney Museum of American Art and the elevated, deserted elevated railroad now changed into a wonderful elevated park that traverses several miles of Manhattan.





Especially enjoyed, and this was the reason for my going to NYC in the first place: the 35th-anniversary reunion concert of "Pump Boys and Dinettes Concert" at Feinstein's Under 54 Supper Club. 

John, Gregory's college roommate and best friend, was one of the composers and stared on Broadway 35 years ago in "Pump Boys and Dinettes." It is a wonderful "feel good" musical that deals with living in a small town, life, love, and Highway 57. Four men play piano, guitar, bass, and electric guitar while they pump gas and repair cars;  two women keep them in tow and serve pie at the attached dinette.


Here is a video from 35 years ago when the show had been nominated for a Tony:


And here is a video from the reunion concert in which I tip the waitresses the same way Gregory and I did some 35 years earlier when we saw the production on New York:


It was wonderful visiting with John whose family became OUR friends as John married Moreen and had three children: Gabe, Grace, and Amelia. It was also good visiting with Grace, now full-grown and in college, who came to NYC from Los Angeles with her dad.

Gabe, by the way, was one of the people who made the documentary ALZHEIMER'S: A Love Story possible. The documentary was part of his coursework at Chapman University, Dodge School of Media Arts, in Orange, California. It went on to be accepted to over 90 film festivals worldwide and won over 35 awards including two from the American Pavilion at the Cannes Film Festival!


My cats, Emma and Gigi, continue to give me great love, affection, and joy as well as cat hair and dirty liter boxes. They both just turned 4 years old.

Emma

Gigi

What a lot about me but since it is my BLOG I can do what I want to! Hahaha, I guess you can understand why while I have been writing, it has been project-based and not necessarily showing up on this BLOG.

Here is a link to a recent article which was published in "Positive Care in Dementia Online Newsletter." which has a subscription of 20,000 readers. Will be interesting to see if there is any response to the article. Click here to go to "ALZHEIMER'S: A Love Story" (Opens in a new window.)

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