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3rd Annual Gathering for People with
Early-Stage Memory Disorders
June 19, 2013

It was quite a “gathering” when forty people with early-stage memory disorders attended the 3rd Annual Gathering for People with Early-Stage Memory Disorders at the Chapter Office.  In addition to our New York City clients, people from upstate New York, Long Island, Connecticut and New Jersey traveled here for the occasion. 

However, the award for most miles traveled goes to our morning presenter, John Baker, who lives in Watertown, South Dakota and was diagnosed with Alzheimer’s disease at the age of 69.  John, a Catholic deacon, has taken on a new role as an as he shared his experiences about living with Alzheimer’s.  As one person commented, “You {John} spoke with a kind voice as though you could sense our concerns and then you addressed those concerns clearly. You made us all feel better.”


John Baker shares his experience living with early-stage Alzheimer’s disease.

Participants then enjoyed a tasty lunch as well as good conversation and a lot of laughs as they got to know one another better. 


Brian Harris, a music psychotherapist conducted the afternoon session which gave the audience a chance to relax and enjoy some fun with music.  Brian began by leading the group through a musical progressive muscle relaxation exercise to demonstrate the benefits of deep breathing on the body and the mind.   The room then became a  bit louder as Brian demonstrated how music can help people’s moods and memories by playing an old favorite by the Talking Heads, one audience member’s request.  The session ended with everyone joining together as they heartily sang the “Streets of Laredo”.


Brian Harris presenting “Tune Into Your Health”.


The group enjoying the music and discussion.

And then it was time to say our good-byes. On her way out, one participant seemed to sum it up best when she said, “This was worth getting up at 4:30 in the morning for!”

 


 

2012 Walk to End Alzheimer's
October 21, 2012

For the eighth year, Walking Thunder raised funds and awareness for early-stage dementia at the annual Walk to End Alzheimer’s on October 21st. It was a beautiful autumn day in Riverside Park, and team members wore their Walking Thunder gear while enjoying the company of family and friends. We hope to expand our Walking Thunder team and come out even stronger in 2013!

 


 

12th Annual Early-Stage Memory Disorders Forum for Care Partners and Professionals
April 18, 2012

The 12th Annual Early-Stage Memory Disorders Forum for Care Partners and Professionals was held at the New York Academy of Medicine, featuring Dr. Hillel Grossman as the keynote speaker. Dr. Grossman, Co-Director of the Clinical Research Core of the Alzheimer’s Research Center and Clinical Director of the Mount Sinai Memory and Aging Center, presented the audience with very clear and understandable information about some of the different types of dementia including Mild Cognitive Impairment (MCI), Alzheimer’s disease, Lewy body dementia, and Frontotemporal dementia. Many of those who attended commented on how much they appreciated listening to such a knowledgeable physician who also showed a great deal of compassion and humanity when talking about his patients, who he referred to as “masterpieces”.

A number of workshops were presented throughout the day which included sessions on what’s happening in the world of research, learning how to fine-tune the art of communication, and gathering information about programs and activities that can help enrich the lives of early-stage people. In the workshop entitled “A Look Inside”, the audience was able to hear from two of our early-stage clients who talked very candidly and poignantly about what it’s really like to live with Alzheimer’s disease.

Many thanks to our Forum Exhibitors and special thanks to the Presenting Sponsor: Janssen Alzheimer Immunotherapy Research and Development (Janssen AI) Pharmaceutical Companies; the Alzheimer’s Immunotherapy Program, Pfizer and to our Bronze Sponsor, The 80th Street Residence.

Photo Gallery


 


 

On November 4th, forty individuals came together at the Chapter office to attend our 2nd Annual Gathering for People with Early-Stage Memory Disorders.  We were delighted to welcome our New York City clients as well as those who traveled here from Long Island, Connecticut and upstate New York.  

The day began with warm welcomes from our President & CEO, Lou-Ellen Barkan, and Jed A. Levine, Executive V.P. and Director of Programs & Services.  The morning session that followed was a real treat for our participants who were given the unique opportunity to talk candidly with a physician about their dementia.  All listened intently as Dr. Veronica LoFaso from the Weill Cornell Medical College, Division of Geriatrics and Gerontology, answered their many questions about treatments, medications, types of dementia, MCI (Mild Cognitive Impairment), current research, and ways to keep healthy in spite of their diagnoses.  Dr. LoFaso’s calm and easy-going demeanor was much appreciated by the participants who felt that she provided them with very thoughtful and valuable information.  As one individual said, “I really liked the doctor.  She seemed so sensible and understanding, and she didn’t rush.”

Dr. LoFaso explains how medications for Alzheimer’s disease work.

After the medical session, a hearty lunch was served by Chapter staff and volunteers which received high praise. The participants also had the opportunity during this time to get to know each other a little better, and many commented that they hoped there would be more occasions like this one to come together and learn from one another. It was clear to the group leaders who accompanied their clients that we must try to organize more events such as the Gathering to give early-stage people additional opportunities to be together and share their experiences.

The afternoon session was conducted by Maureen Matthews, RN, PhD who is the Director of the Early Memory Loss Support Program at the Stamford Counseling Center in Connecticut.  She is also the creator of To Whom I May Concern, an interactive theater project that brings stories of living with early dementia to life as the script of those stories is performed by people who have been diagnosed before an audience of their peers, friends, care partners, and professionals.

As Maureen encouraged our participants to share some of their stories about what it’s like to live with dementia, a letter was created which captured some of their thoughts and feelings in words to be shared with their care partners. The letter they produced appears at the bottom of this article.

And then it was time to say our good-byes. During our wrap-up, the vote was unanimous that Lauren and I should start making plans as soon as possible for a 3rd Annual Gathering. On her way out, one participant seemed to sum it up best when she said, “I thought the whole day was very good. I felt happy and secure when I left, that I was valued…and that means everything to me!”

Dr. Matthews and the group talking about what it's like to live dementia.


November 8, 2011

To My Care Partner,

On November 4th, I joined a group of 40 people at the New York City Chapter of the Alzheimer’s Association for the 2nd Annual Gathering for People with Early-Stage Memory Disorders.  In one of the sessions we talked about what it’s like to live with our illnesses, and wanted to share some of our words with you.  Once you’ve read this letter, perhaps we could talk about who else might benefit from reading it.

“Don’t assume that I don’t know something…give me a chance”.  “Don’t throw it in my face that I might not remember.  A lot of times I do.”

“I could do something yesterday…so just maybe I can also do it today.”

“Pay attention to me, even though I’m young.  Just because I’m young doesn’t mean I can’t have Alzheimer’s.”

“Let me enjoy things while I’m alive.  I don’t intend to die so soon.”

“I’m very much aware of what’s happening.  It’s not just our caregivers
who are.”

“Don’t be afraid to talk with us about what’s happening to us.  It’s good to
have someone who we can be open with.”

“You need to know who we really are and where we really are now in order
to better understand us.”

“We are still very viable people.  We’re still very much here.”

“You’ll understand us better if you listen when we say that we forget. 
Don’t just say ‘that happens to me, too’.”

“It would be nice if you could sometimes be more sensitive and compassionate.”

“We have to recognize that living with this isn’t the end of the world.”

“Accept me as I am.  Understanding is one thing; acceptance is another.”

We had a wonderful day at the Gathering all being together and having the opportunity to hear each other talk about what it’s like to live with dementia.  We found out that we all have a lot in common!
Thank you for caring.

 

Previous Early Stage Memory Disorders Forums for Care Partners and Professionals

Previous Walk to End Alzheimer's Events

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