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Team up with Alpha Kappa Alpha for The Longest Day

1 Feb

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Thanks to Alpha Kappa Alpha for helping raise awareness and funds to #ENDALZ

On The Longest Day let’s do what we love for all those we love affected by Alzheimer’s. Join AKA as we raise funds and awareness for the care, support and research efforts of the Alzheimer’s Association®. Across the nation, we’ll do activities to honor caregivers, those living with the disease and those we’ve lost.
Join us at alz.org/aka.

SHOW YOUR LOVE AND HELP END ALZHEIMER’S

Why I Walk Wednesday with JoAnne Coniglio

26 Oct

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His Voice

I am writing this on behalf of my brother Revell Milliner. He was often too shy to use his voice. He cannot speak today because a dementia-like illness took his life in 2007. His disease lasted about seven years. When we were children our parents often sent both
of us to the little country store down the street from our house to pick up necessary items like Maxwell House coffee. They knew he was too shy to ask for items by name, and they knew that his little sister was not too shy to say anything. They could count on him to patiently control his rambunctious little sister if she would just be his voice.

He was not always comfortable speaking but he could speak to nature with love and compassion like no one I have ever known. He frequently brought home injured animals that he found on the farm or in the woods. He was hunting and fishing at a young age. What I remember most about what he brought home from those hunting trips were injured animals . One was a fox that had been caught in a trap. He kept it in a cage in the back yard until its leg was healed enough to let it go back to the wild. I also remember the crow with the injured wing, that he nursed back to health. I’m sure that the same crow returned to our house often over the years.

As and adult he worked many long hours, but he was always happiest when he was out in nature. He spent many hours in his 3-acre garden raising the most delicious strawberries and Hayman potatoes. He even had a fox that would show up most nights to eat yogurt with strawberries that my brother would feed her from a spoon. Some of his favorite hobbies were to duck hunt, fish and clam in Metompkin Bay. He could talk for hours with his friends and family. One gift he gave our children was the gift of imagination. Fairies, Santa and any magical creature became alive in his vivid tales of their adventures. About mid-way through his illness we tried to take him out in his boat on Metompkin Bay, it was devastating to watch the fear in his eyes because he was so afraid of the trip. I held his hand and tried to help him remember the past.

We watched him lose the ability to work, to garden, to hunt, to fish and to key-hole clams like no other. We watched him lose the ability to speak even to his family and nature. We watched him lose the ability to take care of himself. I held his hand all day the day he died and told him it was all okay and that he would again be able to walk in nature again and breath in the salt air.

Just the other night I dreamed that my brother was still alive and getting healthier because there was a new drug that had been developed that could gradually reverse the devastation of Alzheimer’s disease. I woke up with such excitement!!!

Two years ago, our daughter had a son and named him Revell. My hope and prayer is that through the work and support of the Alzheimer’s Association a drug will be developed in this young Revell’s lifetime.

I hope Revell’s voice speaks to us all to encourage us to support the Alzheimer’s Association and its work!

You can support the Alzheimer’s Association by donating to a Walk team or an individual walker by going to alz.org/walk 

Get more stories like these and up to date information on Alzheimer’s disease in your inbox by subscribing to the Alzheimer’s Association weekly E-News.

Why I Walk Wednesday with Becky Watson

19 Oct

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I’m very proud to walk in RHYTHM with my purple DRUMs during numerous Alzheimer’s Association  Southeastern Virginia Chapter Walks. These beautiful, light and inviting drums create JOY and SMILES with just a gentle tap of the finger or hands … anyone can play a drum!

Music – specifically rhythm – helps people with dementia reconnect in the present moment or environment. With our group music therapy programs for people living with dementia, rhythm is a primary intervention used to engage, energize, and empower.

I love walking and drumming during Alzheimer’s Association Walks because the cadence and rhythm invites others to join me, marching in step to the same beat, synchronicity and entertainment. Drumming also fosters a sense of playfulness or release of anger and tension. It can also help in decreasing social isolation and the building of positive relationships and connections.

It is always a pleasure and honor to find my own rhythm and serve older adults with dementia with energizing music therapy programs. Even though their brains are declining in cognitive functioning, they can still tap to a beat, dance, move and sing with such rhythms, zestenjoyment and laughter!

Join Becky Watson this weekend at the Williamsburg Walk register now.

Final Purple Passion Report from #AAIC16

28 Jul
WEDNESDAY

Well, all good things must come to an end. I’m pointing my purple sneakers south and heading back to Virginia.

A few final musings before I go:

The Alzheimer’s Association International Research Grant Program makes a difference! I have always quoted to people “The Alzheimer’s Association is the largest nonprofit funder of Alzheimer’s research”…but now I have seen some of the recipients, and they are doing great things! Not all of the scientists here have received Alzheimer’s Association funding, but I heard several of them gratefully acknowledge the assistance.

Technology appears to be playing an increasing role in Alzheimer’s…not just the detection and diagnosis, as you might imagine, but even in care and support. I told you about the session I attended the other day (Monday? Who knows any more??) about technology. In addition to the use of computers to increase the engagement of individuals with Alzheimer’s, I heard how telemedicine is being used to make routine follow-up testing and caregiver check-ins more convenient for people in rural/remote areas. And in the Exhibit Hall there are several companies touting various technological offerings…my favorite being the soft, furry baby seal-like “creatures” that respond to being petted and make soft sounds and move their heads; they are used as comfort objects for people in later stages. This morning as I was getting dressed I saw on the local news one of the robots that was developed to detect changes in voice and language patterns to possibly identify signs of early cognitive changes. I know that not all technology being developed will make a difference for people with Alzheimer’s and their families, but it is another piece of the large puzzle.

– I met a gentleman here who has been diagnosed with dementia. He is here with his wife. She was talking to some of us at the Alzheimer’s Association booth, and she told us that he says joining TrialMatch® was the best thing that has happened since he was diagnosed, because he is now enrolled in a trial. He was depressed after his diagnosis, but now he feels like he is doing something to make a difference. That’s powerful.

I joined TrialMatch®a few months ago, and I have so far participated in one trial which uses testing results from healthy volunteers and those with a diagnosis of MCI, hoping to identify markers that can be used for earlier diagnosis. I encourage all Alzheimer’s Association staff to at least investigate the website and read about trials and what is involved. You are under no obligation to participate in any trials, but it is an easy way to find out whether there are trials for which you qualify. Go to http://www.alz.org/research/clinical_trials/find_clinical_trials_trialmatch.asp

End of commercial!

It has been my genuine delight to be your “eyes and ears” at the 2016 AAIC. I hope if you have not attended AAIC before you will consider it. London in 2017! The experience has given me a much better appreciation for the science aspect of the Association.

Most of all, the experience has given me renewed hope and optimism for scientific discoveries that are going to continue to improve the detection, diagnosis, treatment, and, ultimately, find the cure for Alzheimer’s Disease and related dementias. Believe me when I say there are many brilliant people at work across the globe working toward these goals, and the Alzheimer’s Association is playing a leading role in making it happen!

Thanks to the Alzheimer’s Association for the privilege of being the Staff Liaison for this year’s conference. Thanks to all of the National staff who made me feel like “one of the team.”

Just a few more photos from my album…

With Purple Passion and Great Hope,
Sherry
#AAIC16

The Alzheimer’s Association International Conference®2016 (AAIC®) is the world’s largest forum for the dementia research community. Researchers, clinicians, care providers and students from over 70 countries gather at AAIC to network and discuss the latest dementia study results, theories and discoveries.

AAIC 2016 will be held in Toronto, Canada at the Metro Toronto Convention Centre and will feature more than 90 sessions, 1,700 posters and 475 presentations.

Find out more…

Purple Passion Report #1 from Toronto

25 Jul

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Dear Alzheimer’s colleagues:
I’m here- in beautiful downtown Toronto- on the first full day of the Alzheimer’s Association International Conference.
I wonder how many of you were like me… I knew AAIC existed, but it didn’t seem to have much to do with my day-to-day work at the Association. I mean, it’s international (not only in location but in scope), and it’s about science…something I respect very much but certainly can’t claim as an area of expertise. Well, I’m here to tell you, it is an experience that will enlarge your view of the Association’s standing in the global community, and pump up your Purple Pride! 5000 people in one place, with common goals and interests: to share knowledge and advance research focused on the cause, diagnosis, treatment, and prevention of Alzheimer’s and related disorders…brought together by our Association!

First, Toronto has done an amazing job of making AAIC feel welcome. See the sign below? It was at the airport, and was just the first one I encountered. Can’t wait to show you in my next report what they are doing to honor us tonight…stay tuned!

YESTERDAY I attended preconference sessions called Professional Interest Areas (PIA). A PIA is an assembly of ISTAART* members with common subspecialties or interests. The first one I attended, Reserve, Resilience, and Protective Factors, had such an interesting format: 90 minutes worth of 3-minute presentations- speed dating for scientists! As probably the only non-scientist or clinician in the room, I know a lot of the technical terms and jargon went over my head, but I did understand that the studies reinforced our current knowledge about maintaining brain health…that education, physical activity, and reduction in stress appear to be good for our brains!

Plenary opening

THIS MORNING the conference started with a light, music, and acrobatic extravaganza! Cirque du Soleil (Toronto style) meets purple conference! (See below) Alzheimer’s Association President and CEO Harry Johns welcomed us, and Dr. Maria Carillo, the Association’s Chief Science Officer, also greeted the assembled attendees and announced the awards. Several distinguished researchers won awards, but the one that touched me the most was the couple, Jerre and Mary Joy Stead, who were given the Jerome H. Stone Philanthropy Award for Alzheimer’s research. These two individuals are incredible supporters of Alzheimer’s research. In his acceptance speech, Mr. Stead shared some of their philosophy, and he asked the researchers in the room to remember that “Impossible is only an opinion.” I liked that!

More to come, colleagues…but right now I’ve got to go help get thousands of people to board shuttle buses to a reception!

With excitement and passion for our cause,
Sherry (Your Staff Liaison)

*International Society for the Advancement of Alzheimer’s Research and Treatment- a professional society for individuals interested in Alzheimer’s and dementia science

On her first day at AAIC Sherry becomes a “tweet” on the big screen.

 

Why I Walk Wednesday with John Broadwater

13 Jul

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I walk in honor of my wife, Sharon, who was stricken with Younger Onset Alzheimer’s disease in 2007. Her mother and a mother’s brother died from this rare form of dementia that robs active, productive people of their memory and abilities as young as their forties— or even earlier. A very bright woman, Sharon was a biology professor at William and Mary when this terrible disease struck her. She was 62 when diagnosed, but by then she had already taken early retirement because she felt she was no longer able to perform at her previous level. She can no longer care for herself and is living at Clare Bridge, a secure dementia unit at Brookdale Senior Living, Williamsburg. I visit her every day and even though I no longer see a spark of recognition in her face, I believe she’s still in there, somewhere. My heart aches because she no longer recognizes her daughters or grandsons, and is missing out on sharing their lives. My heart aches because I miss her so much.

By participating in the Alzheimer’s Association Walk to End Alzheimer’s, I’m hoping to raise awareness and funds for Alzheimer research, care and support. I walk to help reclaim the future for millions. I walk because I have come to know and care for many brave, devoted families who are dealing with a loved one’s diagnosis of Alzheimer’s. I walk because Alzheimer’s is a cruel, fatal disease for which there is neither a cure nor even an effective treatment, and funds for research are woefully scarce.

Please join with me and Walk to End Alzheimer’s!

The Longest Day Festival

7 Jun

The Longest Day Festival (June 17–20)

The Longest Day Festival and Walking Tour Multiple Locations (less than a mile)

The Longest Day Festival

Monday, June 20 is the longest day of the year and the first official day of summer. It’s also the day the Alzheimer’s Association chooses to raise awareness and financial support for the five million Americans living with the disease. That weekend, the city of Norfolk will join the fight during The Longest Day Festival. Here’s what to expect:

  • The Cause: The Longest Day Festival will not only support the fight against Alzheimer’s, it will also give families around Norfolk a chance to get outside, support local businesses, and explore their city, especially during the…
  • Scavenger Hunt: Participants will discover hidden treasures while investigating Town Point Park, Ghent, Chelsea, and other historic spots. The hunt begins at 9 a.m. on June 17 and concludes at 9 p.m. on June 20.
  • Walking Tours: In addition to the scavenger hunt, you can explore Norfolk on tours that will travel up Granby Street and shed light on local shops, bars, and eateries, plus Norfolk’s brand new Neon Arts District featuring the Glass Wheel Studio.
  • Extras: Free art exhibits | Live music | Food, beer, and wine tastings | Raffles | Cornhole tournament with cash prizes

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Groupon

The Deal

  • $13 for one general-admission weekend pass (up to $20 value)
  • $20 for two general-admission weekend passes (up to $40 value)