“My Alzheimer’s Voice” ~ Sewing her story of grit, one seed stitch at a time . . .

Carol Poole is a competitive, award-winning textile artist who recently submitted a design that is now headed to New York City to compete as a finalist in the 11th Annual Quilting Alliance Contest. At just 62 years old, she was diagnosed with Alzheimer’s, so she chose her beloved quilt-making pastime to tell the world what it’s like to face down a disease that still has no prevention, treatment or cure. “I’m a visual person and I can see what I want to articulate. As I crafted this quilt in my mind and drew a sketch of it, I called upon my past professional career of advertising; it’s all visual,” she says. “What I love about quilting is that I can imagine the concept in my mind, but the actual process of creating the work is meditative. My hands know exactly what to do – it’s muscle memory. Now, with Alzheimer’s, it takes me a little longer to formulate my thoughts, so quilting helps me slow everything down. I don’t have to worry if I’m saying the right things, or if I forgot the words. My hands always know the movements.”

Carol’s “My Alzheimer’s Voice” art quilt is 16” by 16”. It is made with hand-dyed silk batiks using silk batting. She describesFullSizeR001002 it as a bit “intense” for most people. “Folks who like more traditional imagery for quilts, will be challenged to understand why I burned holes in the fabric, sometimes pin pricks and other times larger, to depict the holes in my memories from Alzheimer’s,” she says.

The vibrant textile also has an array of dazzling colors that all pass through a “vortex” in the middle of the quilt and become slightly darker on the other side. “The swirling and concentrated motion of the colors as they pass through the vortex represents how my voice and memories changed with this disease, “ says Carol. “I singed pieces of the fabric with a flame and darkened brilliant fabric colors from one side of the quilt to the other. I wanted to depict the fact that I’m still shades of these dazzling colors, but Alzheimer’s has taken some of the vibrancy away. I wasn’t going for something pretty when I stitched this quilt. I wanted something powerful.”

“Because my brain can sometimes be overwhelmed and take longer to process through things, this quilt let me confine my focus to four-inch squares and then eventually pull them together.” The “movement” in the quilt was accomplished by seed stitching. The seed stitching rules are; no stitch can be longer than a grain of rice; no two stitches can touch each other; and no stitch can repeat itself in a line.


Carol enjoys being a textile artist –  delighting in the fact that she is still competitive in this part of her life’s journey, “I can compete on equal footing in these quilting competitions with people who don’t know I have the disease, “ she says. “They aren’t making special considerations for me the way people do when they know I have Alzheimer’s”.


Carol is more than a competitive quilter. She is a world traveler, Ambassador to the Alzheimer’s Association, a past member of the Alzheimer’s Early-Stage National Advisory Board, and does public speaking to create concern and awareness for the disease. She has also participated in educational videos that help doctors detect and diagnose the disease earlier. “But, this quilt – “My Alzheimer’s Voice “- provided a different avenue and an extension to my own voice,” says Carol. “It’s a legacy piece that will continue to speak for me when I no longer can speak for myself”.

My grandmother taught me how to sew,” she says. “She passed from Alzheimer’s disease, so I love that she taught me this skill, and I can share a piece of both us in this quilt.”

My Alzheimer’s Voice” took Carol nearly four months to make and will be               exhibited online and in the collection that opens in New York, then travels to Virginia and Los Angeles this summer. The exhibit will end in Houston in November.

IMG_2534001 (1) “The quilt displays a set of colors that become more opaque as they pass through the ‘Alzheimer’s vortex’, but they aren’t fading. I may be ‘singed’ around the edges as the fabric shows, but I’m still here. I’ve got an important story to tell – whenever and wherever I can create awareness, there is more opportunity for a cure,” she says.

You can learn more about the Quilt Alliance contest at: http://quiltalliance.org/contest/2017contest/

Learn more about the Alzheimer’s Association or for questions about Alzheimer’s disease and/or caregiving visit: alz.org or call the 24/7 Helpline at 1.800.272.3900.


The City Of Orlando Lights Up Purple For A Purpose For Alzheimer’s & Brain Awareness Month – June 2017 & “The Longest Day”

June 19, 2017, Orlando, FL –  This Wednesday, the City of Orlando remains vibrant, strong and committed to casting a spotlight on Alzheimer’s disease as the image-15City goes “purple with a purpose” for the second year. At sundown Wednesday evening, many different public venues will be lit purple to spread awareness for Alzheimer’s disease and its now global event, “The Longest Day”. The Longest Day is the summer solstice, and the special day that caregivers are celebrated all over the nation and the world…

  • “Thanks to mayor Dyer and the City of Orlando for helping to bring greater awareness to the plight of the 520,000 Floridians suffering from the effects of Alzheimer‘s disease – a terminal disease that has a profound impact on not only the victim, but the entire circle of family and friends. As an Alzheimer’s caregiver myself, I’ve seen firsthand the unique challenges this disease poses to families across our state. By “turning Orlando purple”, city leaders are again showing care, compassion and support for those struggling with this disease while the growing Alzheimer’s community looks forward to meeting its first survivor one day,” says Rep. Scott Plakon of Orlando.
  • In an effort to create maximum awareness for fellow Floridians, Rep. Plakon and Sen. Linda Stewart from Orlando spearheaded the Proclamation to officially recognize this week as Alzheimer’s and Dementia Awareness Week in Florida to coincide with The Longest Day on June 21
  • There are an estimated 5.5 million Americans; 520,000 Floridians, and nearly 60,000 greater Orlando area residents living with Alzheimer’s disease. Florida has the second highest incidence rate in the country for Alzheimer’s and dementia making it “ground zero” for the disease. Alzheimer’s it the sixth leading cause of death in the country, and the only disease among the top 10 leading causes of death without a prevention, treatment or cure.


  • During the month of June, the Alzheimer’s Association is celebrating Alzheimer’s &
    Brain Awareness Month (ABAM) in an effort to raise awareness and support, as Facebook_Image_ABAM2016_gopurple_girlwell as to let Orlando area residents know that there is help in the community. “We offer a 24/7 Helpline manned by dementia specialists every day of the year, every hour of the day and night,” says vice president of programs, Julie Shatzer. “We provide caregiver support groups, education programs, art programs and a host of offerings both in English and in Spanish to all residents,” she adds.
  • Major landmarks in the area will be purple all day and night on June 21,to image-14
    honor those who are caregivers for their loved ones; where every day might
    feel like the longest day, the Alzheimer’s Association is hosting its annual Longest Day® event from sunrise to sunset nationwide and globally, to celebrate all those that have succumbed to the disease and the many caregivers who have loved them.
  • Major sites that are going purple with a purpose should include:


Orlando venues being lit purple (see 2016 pictures below):

·         Astrogenesis II

·         Global Coverage

·         Take Flight

·         Union

·         Cedar of Lebanon

·         Amway Center Sign

·         Orlando’s Tower of Light

·         Lake Eola Fountain, Lake Eola Park –  Downtown

·         Orlando Sign at Citrus Bowl

Alzheimer’s Association®

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research. It is the largest nonprofit funder of Alzheimer’s research. The Association’s mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Its vision is a world without Alzheimer’s. Visit alz.org or call 800-272-3900.

Blondes vs. Brunettes Tallahassee

Welcome to Alzheimer’s Association’s Blondes vs. Brunettes®, where two teams of women – divided to reflect the age-old rivalry between blondes and brunettes – compete in a flag football game to help raise awareness and funds in the fight against Alzheimer’s disease.

Our passion and hard work will take us from practice to the playing field, but our success will rely upon the support of our friends and families and upon all of those willing to donate to this important cause. Together, we can tackle Alzheimer’s

There’s still plenty of time to donate, so visit www.bvbtallahassee.org and make a donation to the Alzheimer’s Association today! #ENDALZ

Team BlondeIMG_4450

Jackie BarkerIMG_4445

Katie Britt (Captain)

Meghann Bryant
Pace Callaway (Coach)
Dustin Frost (Coach)
Lindsay Frost
Kayla Joseph
Amanda Leighty
Nicole Nicholas
Tiffany Parker
Allison Rivers
Nicole Sabol
Christa Salerno
Kelly Schmidt
Lena Shields
Lauren Snyder
Rob Summers (Coach)

Team Brunette

Jossie BarrosoIMG_4448

Christi Billington
Wendi Cannon
Susana Garcia
Annette LeFranc
Jutika Maharaj
Diana Martin
Kim Masson
Sam McCray (Coach)
Allison Menendez
Victoria Pope
Victoria Richmond (Captain)
Victoria RoseCandi Scott
Megan SilverBrooke Sims
Gillian Smith
Courtney Starling
Rachel Steinman (Captain)
Kate Widness

Join us at the Post-Game Celebration!

Florida Wing Factory 3551 Blair Stone Road Tallahassee, FL 32301

10% of the proceeds will benefit this year’s game!

Want to join in on the fun?

If you’d like to join us as a player, coach, volunteer, sponsor, or community partner, please email Hannah Volz, Associate Director of Community Outreach, at hvolz@alz.org.

Find us online at bvbtallahassee.org or on Facebook @BlondesvsBrunettesTally.


RivALZ Game Day ProgramThere’s still plenty of time to donate, so visit www.bvbtallahassee.org and make a donation to the Alzheimer’s Association today! #ENDALZ

Alzheimer’s Association Traveling Cards

Our Alzheimer’s Association traveling cards can be helpful in many situations – whether traveling to the grocery store, a restaurant or even through the airport these cards can help you communicate to others that extra patience is required in a quick, discreet way. You can contact your local office for cards by calling 1.800.272.3900 or print from your own home using these files:

These files are made to work with business card template paper by Avery 5371 but of course regular paper and a pair of scissors always works as well.


• For more traveling tips, visit Traveling Tips for People in the Early Stages.

• For information on managing activities, check out Alzheimer’s Association Summer Safety Tips

• On how to navigate the holidays, take a look at Holiday Tips – How to Manage the Holidays when your loved one has dementia or Alzheimer’s disease.

Blondes vs. Brunettes – using Football to Tackle Alzheimer’s – one play at a time…

from the Tallahassee Democrat…

An age-old rivalry is being put to good use.

Tallahassee’s annual Blondes vs. Brunettes flag football game is coming up next month. The game is part of the Alzheimer’s Association RivALZ league, which raises funds nationwide for Alzheimer’s awareness.

Hannah Volz, a spokeswoman for the Central and North Florida chapter of the Alzheimer’s Association, said about 40 different RivALZ games happen all over the country. They aren’t all Blondes vs. Brunette games, any rivalry counts for RivALZ.

Tallahassee’s event is on May 13th on Florida High’s campus.

For Volz, the issue is a personal one. Many players who come out to participate have been impacted by Alzheimer’s in some way – if it’s not personal, there aren’t many degrees of separation.

“I lost three grandparents to Alzheimer’s and one to vascular dementia,” she said. “This is a cause that’s really close to my heart. It’s been kind of cool to go from being a volunteer to being a staff person now working for the Alzheimer’s association.”

The game isn’t limited to blondes and brunettes, of course. People outside those two hair colors are considered free agents, capable of joining either squad.

“We welcome everybody,” Volz said with a smile.636279594890855207-RivALZ-004.jpg

The fundraising goal for this year’s event is $20,000. As of Sunday evening, $8,387 has been raised toward that goal.

There are still fundraising events coming up before the game – the group has a Facebook page with player stories and updates on upcoming events.  Volz said between 100 and 200 people come out each year to the event.

Tori Richmond, who has been participating in the event for the last four years, said thanks to events like the RivALZ game, there’s more awareness of Alzheimer’s.

“My grandmother started showing signs of Alzheimer’s about two years before she was officially diagnosed,” she said. “If my family would have had more awareness about what the signs are, personality changes, I think we could have helped her out a lot more.

“Just learning more about it and being able to educate other people about it and (show) how far we’ve come in terms of Alzheimer’s awareness and research.”

Richmond, a former Florida State swimmer who plays for the Brunettes squad, said the event is for anybody who wants to player. She has personal experience with Alzheimer’s, that’s not the case for every member of the team.

Plus, not every member of the team is a former college athlete.

“We practice so much that ultimately, you will see an improvement,” she said. “Last year, one of our teammates came out having never played a lot of football. She was probably one of our most dedicated players. She came to every practice and she ended up catching an interception in the game.”

Richmond said playing in the game and meeting the women involved has given her a different perspective on Alzheimer’s and its impact in Tallahassee.

“I look forward to this every year,” she said. “Every year we start earlier and earlier. It’s a social thing, as well as just doing something for the community and learning more about the community. All of the women are leaders in this community.”

For more information, visit bvbtallahassee.org.


51% of tweets about dementia contain stigma: study ~

from McKnight’s Senior Living Article

Karen Hooker, Ph.D. (Oregon State University College of Public Health and Human Sciences)Karen Hooker, Ph.D. (Oregon State University College of Public Health and Human Sciences)

Fifty-one percent of tweets by private users of Twitter accounts contain comments that are stigmatizing when they mention dementia or the people who have it, according to a study recently published in Journals of Gerontology: Psychological Sciences.

Researchers at Oregon State University, Corvallis, OR, made the determination after they developed software and analyzed 33,000 tweets that made some reference to Alzheimer’s disease or another form of dementia.

“It was shocking to me how many people stigmatized Alzheimer’s disease and reinforced stereotypes that can further alienate people with this condition,” said one of the paper’s authors, Karen Hooker, Ph.D., who holds the Jo Anne Leonard Petersen Endowed Chair in Gerontology and Family Studies in the OSU College of Public Health and Human Sciences.

The stigma, she added, can lead people with dementia to perform worse that they would have otherwise, due to negative expectations and stereotypes.

“This type of stigma can make it less likely that people will admit they have problems or seek treatment, when often they can still live satisfying, meaningful and productive lives,” Hooker said. “Our attitudes, the things we say, affect others, and social media is now amplifying our ability to reach others with thoughtless or hurtful comments.”

Those concerned about dementia and those who have it, the authors suggested, can try to be more conscious of their own comments on social media and more willing to engage with others who are using language that seems insensitive or potentially hurtful.

“We should also consider ways to combat stigma and negative stereotypes by tweeting about the positive experiences of persons with dementia and people in their social networks,” Hooker said.

Lead author of the study is Nels Oscar, an OSU graduate student in the College of Engineering. Additional authors include Pamela A. Fox, Racheal Croucher, Riana Wernick and Jessica Keune.


Kentucky Derby Viewing Party hosted at the Mezz in Orlando – a Great Success!

horsesHats, Horses and Hope! Thank you to everyone for helping us put together our First Annual Derby Viewing Party: Hats, Horses & Hope; what a beautiful evening it was!

No matter which horse was crowned the champion on Derby Day (“Always Dreaming” for all you Derby enthusiasts); the Alzheimer’s Association took the ultimate prize!

The Hats, Horses & Hope party was a festive and exciting occasion where participants enjoyed watching the Kentucky Derby and did a little friendly betting for prizes, while raising funds and awareness for Alzheimer’s programs and support services in our area.

We are so grateful for all the support and time our local volunteers and partners have given to make this important event possible!

Special Thanks to:

Our Community Partners:

Sawyer & Saywer PA

Huffman Wealth Advisory of Raymond James

Jockey Level Sponsors:

Brookdale of Lake Orienta, Neha Doshi, MD, and Mercury Plumbing


3.6.9 Chinese Restaurant

4 Rivers Smokehouse

Air Tech of Central Florida

Amie Stafford, Portraitist

All In! Casino Events

Apple Blossom Florist and Gifts

Be On Park Fine Jewelry

Blown Away Winter Park

Boston’s Fish House

Brazas Chicken

Briarpatch Restaurant & Ice Cream Parlor

Brookdale of Lake Orienta

Bryan Johnson

Charmine Frase Hair Design

Chi Pan Asian

City Oasis

Cooper’s Hawk Winery and Restaurant


Darlene Fritsma

Dr. Jennifer Ortega, DMD

Durian Durian

Edible Arrangements Winter Park

Emily Stouffer

Eye Physicians of Central Florida

Hand & Stone

Hawks Landing Golf Club

Huffman Wealth Advisory of Raymond James

Laughing Monkey Pottery

Longwood Veterinary Clinic

Luma on Park Avenue

M.A. Porter, Artist

Ma’s Art and Stuff

M&M Nail Salon



Maitland Avenue Dental

Margaret Kinsey

Mercury Plumbing

Neha Doshi, MD

Orlando Art Museum

Orlando Shakespeare Theater

Neha Doshi, MD

Paddleboard Orlando


Pizzeria Valdiano

Robert Kinsey

Rock and Brews Oviedo

Romano’s Macaroni Grill

Sawyer & Saywer PA

Seasons 52

Siegel’s Clothing Company for Women and Men

St. Johns Rivership Company

TerraMia Wine Bar and Trattoria

The Great Escape Room

The Parkview

Tim’s Wine Market

Trader Joe’s

Truffles and Trifles

Tuni Trendy + Chic

Viet Garden Restaurant

Vinzo’s Italian Grill and Pizzeria


Youfit Health Clubs 

Orlando Science Center

Salsa Heat Dance Studio

Saylor Physical Therapy

Winter Park Distilling Company

Taking Care of You – When a loved one has Alzheimer’s

Taking care of you: When a loved one has Alzheimer’s — The Interview

By Michael Joe Murphy

Nearly 25 percent of Florida’s population is age 60 years and older, and more than half a million of these seniors are living with Alzheimer’s. To learn more about the prevalence and treatment of Alzheimer’s, the Orlando Sentinel Editorial Board tapped the expertise of Rosemary Laird, M.D., a geriatrician at Florida Hospital’s Centre for Senior Health. As a backdrop, Florida’s Legislature is considering a $20 million budget cut that would affect seven memory disorder clinics in the state, even as Sen. David Simmons, R-Altamonte Springs, sponsors a bill to designate a memory disorder clinic at Florida Hospital in Orlando.

Q: What does treatment for Alzheimer’s involve?

A: Ideally, treatment for Alzheimer’s disease involves a team of professionals trained in the disease and experienced with the course of the illness assisting patients and their families through the course of this chronic illness. I say “ideally” because that type of team-based care is not readily available everywhere. Often it is found in academic medical centers and some community-based health systems. To address the range of needs an ideal care team includes a medical doctor, an advance-practice registered nurse, and a licensed clinical social worker, and perhaps even a pharmacist. Florida Hopsital’s Centre for Senior Health is an example of a team-based clinic providing full range of diagnosis and care support.

There are traditional, FDA-approved medications that have shown benefit in about 40 percent to 50 percent of the patients who take them. Benefits can include slowing the decline of cognitive ability or memory loss, and slowing the loss of function.

There is a misconception that because there is no “cure” for Alzheimer’s, there is no “treatment.” That cannot be further from the truth. There are many strategies we can take to assist the patient and family in coping with the changes of the illness, adapting their day-to-day routines, as well as the need to address symptoms that are common accompaniments of Alzheimer’s disease such as depression, anxiety, sleep disturbance, weight changes, etc.

Sadly, even among physicians sometimes there is a pessimistic outlook communicated that there is “nothing to be done,” so we try to make people aware of the availability of support.

Q: How prevalent are Alzheimer’s and other diseases that affect memory?

A: According to the Alzheimer’s Association, more than 5 million Americans are living with the disease. There are 480,000 people with Alzheimer’s disease or related disorders in the state of Florida. Here in Central Florida, we believe there are about 30,000 patients with Alzheimer’s living in Orange, Osceola and Seminole counties.

Q: Are certain populations more at risk?

A: Almost two-thirds of Americans with Alzheimer’s are women, and there are differences among different ethnic groups as well. African-Americans are about twice as likely to have Alzheimer’s or other dementias as older whites. And Hispanics are about one and one-half times as likely to have Alzheimer’s or other dementias as older whites. Studies have found that diabetes and cardiovascular risk factors — such as high levels of blood pressure, blood sugar and cholesterol — increase the risk of dementia.

Q: What are the trends in how many people will be diagnosed?

A: This is an interesting question. There was a study that found dementia rates are actually declining. The decline may be due to an increase in medications to treat risk factors such as cholesterol and high blood pressure, and to improved awareness of the need for brain health and wellness among many seniors. But simply being 85 years old and older is a risk factor, so as the population ages in the coming decades, we will still see many, many patients.

Q: Are there any improved treatments or breakthroughs on the horizon by drug makers on Alzheimer’s?

A: The short answer, unfortunately, is no. There are many, many issues with clinical trials involving Alzheimer’s. Since the diagnosis is so difficult, it is hard to know you are testing effectiveness against Alzheimer’s when you test a drug. Some scientists believe that by the time the brain shows signs of the disease, it may already be too late to treat the damage with drugs. People should know that it’s unlikely that there will be a cure in the next 20 to 30 years. Those of us with aging parents should be prepared for the possibility that we will need to act as caregivers.

Q: What advice do you have for caregivers to help handle the burden of caring for a loved one with the disease?

A: I co-wrote “Take Your Oxygen First: Protecting Your Health and Happiness While Caring for a Loved One with Memory Loss” about this issue. And that’s a main point I would stress to caregivers. This is a long illness, involving the slow loss of ability and the increased need for care support over time, so the impacts are enormous not only on the patient but on the caregiver. You have to take care of yourself first, or the chronic stress of caregiving over such a long time horizon will add illness to your life, in addition to your loved one’s illness.

Q: What is the importance of pending legislation establishing a memory disorder clinic at Florida Hospital?

A: Since 2012, Florida Hospital has operated its self-funded memory disorder program, the Florida Hospital Maturing Minds Clinic. FHMMP provides early screening and diagnosis; helps patients manage their symptoms; provides education and training for caregivers; and conducts research. FHMMP currently conducts more than 360 new patient memory loss evaluations each year and provides services and referrals to other local organizations to additional patients and caregiver clients.

The pending legislation would add our clinic to the list of state-recognized memory disorder clinics. This change will give us a competitive advantage when we apply for state and national grants, potentially bringing federal funding home to Florida. It will also help us continue to grow our programs offering state-of-the-art diagnosis and care for patients with Alzheimer’s and related dementias and support for their caregivers here in Central Florida.

As appeared here in Orlando Sentinel
Copyright © 2017, Orlando Sentinel

New COUPLES group at Camellia

The first “Coping as Couples” Early Stage Support Group will be meeting on May 9th.  The community is continuing to host a traditional caregiver support group at 5:30 PM.  The couples group will meet in a separate room an hour later at 6:30pm.
Camellia at Deerwood – Coping as Couples
Early Stage Support Group for Couples
10061 Sweetwater Parkway, Jacksonville, FL 32233
2nd Tuesday of Every Month 6:30 PM2016_CareAndSupportShoot_Chicago_DayTwo_187
Carla and Liz
Refreshments served.
RSVPs are required, call our Helpline at 1-800-272-3900

Contact: Helpline
Email: infocnfl@alz.org
Phone: 800-272-3900

2016_CareAndSupportShoot_Chicago_DayTwo_198Support groups create a safe, confidential, supportive environment or community and a
chance for participants to develop informal mutual support and social relationships. They also educate and inform participants about dementia and help participants develop methods and skills to solve problems.

The groups encourage caregivers to maintain theirown personal, physical and emotional health as well as optimally care for the person with dementia. In addition, they may provide a needed break from caregiving responsibilities.