You are invited to attend the next E.A. Roberts Support Group on November 12, 2015 at 10:00 am.  Located on 169 Mobile Infirmary Boulevard in Mobile, AL.  Complimentary care will be provided during the meeting.

Come meet Brian LeBlanc, Advocate and member of the Alzheimer’s Association National Early-Stage Advisory Group, who will tell his story and explain his life with Alzheimer’s disease.

For more information, call 251-435-6950.

On a recent visit to Brooklyn, NY to celebrate with my son and his newly pregnant wife, I remembered seeing Cobble Hill Health Center on my last visit in his neighborhood.  It sits on a quaint street just blocks from the Brooklyn Bridge Park.  I had walked past and wondered what lay within the nicely manicured entrance of the red brick building where several folks in wheelchairs sat outside.

Having seen the movie, “Alive Inside”, I thought that name was the place where Henry “came alive” while listening to music on an iPod for the first time. So I reviewed the movie on Netflix and got the name of the Activity Coordinator featured and gave her a call at work.  She was there and we set up an appointment to meet that afternoon.

Taking my film producer/photographer son along (just in case), we waited in the lobby for Yvonne Flunory.  She has been an Activity Coordinator at Cobble Hill Health Center for sixteen years. She loves her work and makes it a family affair. She proudly explained that her daughter comes as a junior volunteer. Under the leadership of Louise Dueno, the Director of Therapeutic Recreation, along with two other Activity Coordinators, Cheryl McNeill and Renée Adamson, they offer the activities for all 364 residents. Forty beds are in the dementia unit.  They were all gracious enough to wait around after a long day to talk with me and my son for an hour. When sharing the bond of dementia care, there is so much to learn, so much to talk about, yet the subjects extended beyond what I expected.

I wanted to know how the release of the movie “Alive Inside” had affected them.  But first, I met Louise Dueno.  She warmly received us in her office and told us of her family connections of caring for her father who had vascular dementia, what it was like for her as she shared the care with her sister, and how he ultimately died.  Then she described the difficulties she had caring for her uncle and how he became a resident at Cobble Hill Health Center. So her professional life blurs into personal enabling her to  understand what families are dealing with. She related an experience she had just that day that gave her some relief that she had made a good decision about placing him in someone else’s care. She understood why I would take the time from a vacation to stop in and talk to her about caring for a loved one with dementia.

Ms. Dueno told me about the The Alzheimer’s Association, New York City Chapter’s Palliative Care for Advanced Dementia: Training and Implementation, called “Comfort First” being developed in their facility with a grant coordinated by Ann Wyatt from the Alzheimer’s Association.  We talked about the Music and Memory Program that became popular after the release of the movie “Alive Inside” which offers certification that Cobble Hill Health Center has.  That means that upon the initial assessment of a new resident, music preferences are examined either from information from family members, popular music from their era, and other background information. She also mentioned how Wisconsin is implementing this program in 250 long-term care facilities, replacing antipsychotic drugs with music for managing behavioral symptoms. She showed me her collection of iPods being charged in her office, her stash of replaceable sponge headset covers, and her two laptops that they use with their residents. We agreed that the direct listening of ones’ favorite music was more effective than a group activity of listening to music as it shuts out all the other noises and distractions.

While we talked, another woman waited patiently to speak to us.  Turns out, she had some information she wanted to share.  For six years, Ammeka Berken has coördinated and initiated volunteer programs with New York Cares, a not-for-profit program that is a clearing house for volunteers in New York.  Since my son lives near Cobble Hill Health Center, she invited him to their recurring programs at the Center:  Friday they take up to ten residents down to the Brooklyn Bridge Park; Saturday is Swing night which is a dance for the residents; then on Thursday evenings they take residents down to hear the live music at the park.  She took the opportunity to spread her mission by including us.

Passion is what drives those who believe in what they are doing.  Whether it is Dan Cohen with his development of the Music and Memory Program, or initiating the “Comfort First” program in residential facilities, or matching volunteers with life changing opportunities, or implementing activities to residents in long-term care facilities, or caring for a loved one, we move by a force beyond our own strength and abilities. The wish to enrich life for another human drives us to do, to pursue, to create, to learn, and encourage others to do the same. It was a delight to meet these passionate people.

Our encounter built a bridge from Mobile, Alabama to Cobble Hill, NY. May we learn from our connection and strengthen the resolve to improve the care for people with dementia.

Do you have parents who have Alzheimer’s disease and you’re concerned that you may soon be developing symptoms yourself?  That you want a cure to be found before it’s too late for you or your children?  There is something you can do.  Several prevention trials are going on that you may be interested in.  In particular, the A4 Study is for people with no symptoms but may have several reasons for thinking they may develop Alzheimer’s disease. The researchers need 1000 people to participate. You may be eligible if you:

• Are 65 to 85 years old
• Have normal thinking and memory abilities
• Have an A4 study partner – someone who has at least weekly contact with you who can answer questions once a year
• Are willing and able to receive IV infusions of the investigational treatment or placebo for 36 months (36 monthly infusions); all A4 participants must be willing and able to participate in all required procedures for the duration of the A4 study.
• Are willing to have your health monitored throughout the study using assessments such as:
  • Memory and thinking tests
  • ECGs (a look at your heart)
  • PET scan (a way to look for the plaques thought to be associated with AD)
  • MRI scans (a way to take a picture of your brain)
  • Blood and urine tests

Click here to Find a location where this trial is going on .  Other trial match opportunities may be found at alz.org.

Sometimes when opportunity knocks, it takes a while to sort out the answer.  I have mulled over such an answer for some time now.  I refused the offer at first, but it was always in the back of my mind.  I tried to find someone else to seize the opportunity, but none prevailed.  I continued to consider the opportunity, making it a regular topic in prayer, and I looked for confirmation for a decision. While on a recent trip to the Smokey Mountains, my husband took this photo of me, relaxing in the warmth of our porch.  When I saw the photo, I found the answer that I sought.

A purple beam from above seemed to shine down upon me.  Purple?  Really?  The color of my watchband, my luggage, my purse, many of my clothes and accessories – the color I have worn for the last several years to represent the millions who are living with Alzheimer’s disease. Not that a beam of light was the main reason to help me decide, it was just more of a sign.  Okay, I thought, I’ll do it.

I’ve accepted the job of Ambassador for the Alzheimer’s Association for our area (AL 01).  That means I’ll be more vocal about the needs of families living with AD.  It means I’ll attend the Alzheimer’s Association Advocacy Forum in Washington, DC again this year and speak up in Montgomery when the time comes.  I want to see change in the many ways we serve and live with people with dementia.  May God bless all our efforts and inspire us to make positive changes.

Click here for the big scoop.  Thanks, AL.com for this great coverage.

Register now for the Eastern Shore Walk to End Alzheimer’s.

See  AL.com press release and then read the original below.  Thanks, AL.com for getting the word out.

Check it out.

However, here is the complete article:

EASTERN SHORE WALK TO END ALZHEIMER’S

It wasn’t supposed to be this way. At the age of 84, retired nurse Peggy Sagan of Fairhope, Alabama, never imagined that she would be observing the care of her own daughter, Pat. Especially since her daughter had excelled in nursing, pursuing degree after degree to become an instructor and mentor to so many. Peggy didn’t want to believe that Pat had become the victim of early onset Alzheimer’s disease at age 50. However, with no cure in sight, Peggy does what she can. Accompanied by a faithful friend, she makes the weekly trip to Biloxi, Mississippi, to visit Pat, who lives with her husband and two sons. Pat was diagnosed with Alzheimer’s 8 years ago and now receives care from not only her husband and family members but also from hospice.

Because of the distance between Fairhope and Biloxi, Peggy can’t help her daughter as often as she’d like. Instead, she volunteers at the Adult Day Respite called Shepherd’s Place, located at the Fairhope Methodist Church. The Director of Caring Ministries of the church, Dr. Ann Pearson, established Shepherd’s Place out of her own experience of caring for her mother, who for seven years lived with Alzheimer’s disease. What started out as a two day a week respite to support caregivers in 2009 has doubled to four days a week, with 35-40 volunteers to help run the program.

The team at Shepherd’s Place is preparing for the upcoming “Eastern Shore Walk to End Alzheimer’s,” which will raise awareness of the growing population of people living with dementia. After all, 93,000 Alabamians are estimated to have Alzheimer’s. Of Americans age 65 and older, 1 in 9 has Alzheimer’s; for those age 85 and older, 1 in 3 has the disease. Another American develops Alzheimer’s disease every 67 seconds. Due to the large number of Americans suffering from this disease, purple is becoming easily recognized as the color to support Alzheimer’s disease.

The Walk is designed to raise funds to further the care, support, and research efforts of the Alzheimer’s Association. Although there is no registration fee, all walkers must register and are encouraged to make a donation to join the fight against Alzheimer’s. The event will begin at the Fairhope Pier on September 20, 2014. Registration opens at 7:30 a.m., the ceremony begins at 8:45 a.m., and is followed by a two-mile walk through Fairhope.

Shepherd’s Place will have a booth set up to display colorful art projects participants have made. Other informative booths representing resources available in our area to families living with Alzheimer’s disease will be featured. Fairhope’s own Andy Luedecke of Synergy Home Care is the force behind the Walk along with many volunteers who are dedicated to make life better for those living with Alzheimer’s disease.

Registered walkers will receive a “promise garden” flower in the color that best represents their connection to the disease. Peggy will be given a yellow flower as she currently supports her daughter, Pat. Ann will have a purple flower as she has lost her mother to the disease. There will be blue flowers for people living with the disease, and Andy will have an orange flower as he supports the cause and a vision of a world without Alzheimer’s.

The Alzheimer’s Association “Eastern Shore Walk To End Alzheimer’s” is promising to be an anticipated annual affair for the entire family. To be a part of this inaugural event, put on your purple attire and join in. Everyone has a reason to end Alzheimer’s.

For more information or to register online, go to act.alz.org.

Written by Alzheimer’s Association advocate, Beth Reinert, of caregiversunite.org.

The Mobile Museum of Art is offering a free workshop for loved ones and caregivers dealing with early stage Alzheimer’s disease.  Art has the power to touch some of the deepest parts of memory.  Through specifically designed gallery tours, art activity training, and the vital experience of Alzheimer’s professionals, participants are provided with the tools to make meaningful connections through art-making and appreciation.  After the training workshop, participants may volunteer in the Keepsake Tour Program at the Mobile Museum of Art.

Training workshops will be held September 8, 10, 15, 17, 22, and 24. (Mondays and Wednesdays)

6 -8 pm

Free to the Public

Preregister for Keepsake by September 1, 2014.

It’s finally going to happen – A Walk to End Alzheimer’s is in the planning stages.  It will be held at the Fairhope Pier on September 20, 2014.  The kick-off party is planned for Tuesday, May 13th from 5 – 7 at Laps Grocery and Grill.