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.”

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!”

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.

Walk to End Alzheimer’s, 2011
October 23, 2011
Riverside Park

Once again, Walking Thunder enjoyed a very successful Walk to End Alzheimer’s. Walking Thunder team members sported their bright yellow hats and pins and enjoyed a morning walk in Riverside Park. Together, they raised almost $40,000 for Alzheimer’s research, programs, and services and won the award for the “Top Fundraising Group.” More importantly, the team members increased awareness of early-stage dementia. The NYC Walk to End Alzheimer’s is close to raising over $1 million. We hope to see the whole team back and NEW members in 2012 for the Walk to End Alzheimer’s.

For more information about Walking Thunder, click here.

11^th Annual Early Stage Memory Disorders Forum
April 29, 2011

The Alzheimer’s Association, New York City Chapter hosted its 11th Annual Early Stage Memory Disorders Forum for Care Partners and Professionals on April 29, 2011 at The New York Academy of Medicine.  The Forum’s theme, “The Early Years:  A Spectrum of Changes”, provided participants with the opportunity to focus on the transitions that occur during the early years of Mild Cognitive Impairment (MCI), Alzheimer’s or a related disorder, recognizing the spectrum of changes that early-stage people, their care-partners and professionals frequently encounter. 

The Plenary session’s keynote speaker, Lisa Snyder, clinical social worker and Director of Quality of Life programs at the University of California, San Diego’s Shiley-Marcos Alzheimer’s Disease Research Center shared her expertise in early-stage issues as she talked about the challenges faced by care partners and professionals.  Snyder gave the audience a lot to ponder as she guided them to “find their rhythm” as they provide care to the early-stage person.We also heard from 46-year-old Holli Engard, one of the Association’s early-stage clients, who talked about what it’s like to live with dementia at such a young age.

A number of workshops were presented, including sessions on differentiating between MCI and early dementia, how to best recognize the “red flags” when a person with dementia lives alone, and the importance of making legal and financial plans. 

Some of the participants had this to say about the Forum:

• Thank you!  I found this very helpful.  The only difficult task was choosing which break-away to go to. 
• The forum was very informative.  I have a friend who has the disease and it will help me to understand the illness and to help them cope.
• Thanks for a lovely day with excellent information.

FULL CIRCLE
A Gathering for People with Early-Stage Memory Disorders

It was such a wonderful day! On November 12th, forty-one individuals with early-stage memory disorders gathered at our Chapter office to attend an all-day event that focused on ways to live their best, in spite of their illness. What made this gathering so unique and special was that, for the first time, early-stage people came together without their caregivers to share their thoughts and experiences with one another, and to learn more from each other about how life with mild cognitive impairment or dementia can be lived to the fullest. In addition to our Chapter’s clients, six group leaders accompanied their clients who traveled from Long Island, Upstate New York and Connecticut to join in the event.

KEYNOTE SPEAKER – LISA SNYDER
The keynote speaker was Lisa Snyder, LCSW, the Director of the Quality of Life programs at the University of California, San Diego’s Shiley-Marcos Alzheimer’s Disease Research Center, where she has worked with people with dementia and their families for over 20 years. Lisa is also the author of the newly released book, Living Your Best with Early-Stage Alzheimer’s.

The audience listened intently as Lisa talked about the three areas of well-being that would be the focus of her very interactive discussion with them: (1) Cognitive or mental well-being that results from remaining active and being involved in such meaningful activities as writing, knitting, getting together with friends, and enjoying your pets. (2) Physical well-being that relies on developing good eating habits, getting lots of exercise and making certain that you get enough sleep. (3) Emotional well-being that results from feeling a sense of purpose and value that can come from family, friends, praying, being loved, and socializing with people you care about. As she presented each of these areas, Lisa encouraged audience participation…she was not disappointed. The room came alive as people enthusiastically shared their thoughts and experiences about what living your best means to them. One of the participants later said, “I loved when we were all together talking about how we live our lives. I felt reassured being with so many other people like myself…it was really stimulating.”

WORKSHOPS
Participants enjoyed a delicious lunch which was followed by two afternoon workshops. The first, “Let’s All Be Advocates”, was led by Lauren Tiede and Paulette Michaud, the Coordinator and the Director of Early Stage Services. Once again, the voices of our early-stage people rang out. This time it was to write a letter to their congressmen in the House of Representatives asking for increased funding for Alzheimer’s disease research. It was wonderful to watch the participants turn into impassioned advocates who understood that they could really make a difference in the fight to end Alzheimer’s. Here is the letter they produced:

The second workshop given by Jed Levine focused on “Medications & Alternative Therapies”. Jed provided information about medications that are currently available for symptom control. He then went on to talk about some of the alternative approaches to healthy living that can improve quality of life including meditation, reiki, engaging in sports, and adopting good eating habits. Everyone agreed that there are lots of things each of us can do to maintain a healthy lifestyle, in spite of having an early-stage diagnosis.

The day ended with a wrap-up session in which everyone heartily agreed that we have to hold a Gathering each year. As one participant commented, “I would like to have more of this. Everything we did today was very valuable.” And once again, their voices will be heard.

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