Why I Walk – Rahul Jilakara

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My name is Rahul Jilakara and I Walk to End Alzheimer’s to raise awareness about the disease and to change the future for my generation.

I began volunteering with the Alzheimer’s Association in St. Louis in 2012. In 2013, my family and I moved to Richmond and I continued my volunteer efforts with the Greater Richmond Chapter. This year, I was honored and excited to be part of the Richmond Walk to End Alzheimer’s Committee.

Since I began volunteering, I have met so many wonderful people at the various Alzheimer’s Association support groups I’ve attended. People full of life and energy. Yet sadly, Alzheimer’s has slowly stolen that from them.
I am currently a junior at Deep Run High School and although I do not have a direct family connection to the disease right now, many of my friends and classmates do.

My classmates and friends have shared stories about how their grandfather, grandmother, aunt, uncle or other family member with Alzheimer’s can no longer recognize them. They shared their sadness with me and they’ve explained the emotional impact it has on them and their families.

I realized I could do more to help find a cure and support those affected, so this fall I started an Alzheimer’s Awareness Club at my school.

I recognize that in the future, it is extremely likely that every single person currently in my high school, or in high schools around the country, will know someone personally with Alzheimer’s. Maybe their parents. Grandparents. Themselves. Maybe even me.

It is my generation that can change the course of Alzheimer’s, and we have to. It is our future at stake.

The Walks to End Alzheimer’s may be over, but there is still time to donate.

Get involved and make a difference for the millions of Americans with Alzheimer’s disease or other dementias!

Northern Neck – Middle Peninsula: Donate at http://bit.ly/ALZ_Walk_NorthernNeck

Fredericksburg: Donate at http://bit.ly/ALZ_Walk_Fredericksburg

Tri-Cities: Donate at http://bit.ly/ALZ_Walk_TriCities

Richmond: Donate at http://bit.ly/ALZ_Walk_GRVA

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Why I Walk – Christy Walsh-Smith

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My name is Christy Walsh-Smith and I Walk to End Alzheimer’s for the countless families and patients I have connected with over the years in Central Virginia that are affected by the disease and other dementias. I have seen these families face some of the most difficult decisions and circumstances imaginable, and they need a place to turn for support and advice. For many, the Alzheimer’s Association is that place.

I Walk for the millions of families and patients across the country who are facing these same circumstances.

I Walk for all of my friends who are facing these same issues, and for my colleagues in the senior care community who care for these patients when their families are no longer able to care for them.

I Walk for my Father who was diagnosed several years ago – a man who spent his career communicating with others is losing his ability to do so.

I Walk for my Mother who takes such amazing care of him, and does so with amazing grace.

I Walk because I want a world without Alzheimer’s disease.

2014083195132755The Walks to End Alzheimer’s may be over, but there is still time to donate.

Get involved and make a difference for the millions of Americans with Alzheimer’s disease or other dementias!

Northern Neck – Middle Peninsula: Donate at http://bit.ly/ALZ_Walk_NorthernNeck

Fredericksburg: Donate at http://bit.ly/ALZ_Walk_Fredericksburg

Tri-Cities: Donate at http://bit.ly/ALZ_Walk_TriCities

Richmond: Donate at http://bit.ly/ALZ_Walk_GRVA

#WalkWednesday #EndALZ #Alzheimers

Alzheimer’s Association Greater Richmond Chapter’s Eighth Annual Alzheimer’s Advocate Recognition Reception

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On Wednesday, November 5th, in honor of Alzheimer’s Disease Awareness Month and National Family Caregivers Month, the Alzheimer’s Association Greater Richmond Chapter held its Eighth Annual Alzheimer’s Advocate Recognition Reception at the Virginia Historical Society. The event was emceed by Easy 100.9 FM’s Bill Bevins.

“Advocacy means ‘giving voice’ and this year’s honorees work tirelessly in the community to give voice to those who can no longer speak for themselves,” said Sherry Peterson, CEO of the Alzheimer’s Association Greater Richmond Chapter. “Advocacy is a major component of our mission and all of our advocates play an important role in improving the quality of life for people with Alzheimer’s disease and their families and their combined voices provide hope and are a powerful tool for change.”

This year’s honorees included Robert B. Schaefer, Delegate Christopher K. Peace, and Seniors Guide.

Robert B. Schaefer:

Mr. Schaefer became an Alzheimer’s care partner when his wife Sarah was diagnosed in her late 40’s and for twenty-two years he provided loving care, first at home and then in a long-term care facility. During this time, Schaefer began volunteering with the Alzheimer’s Association Greater Richmond Chapter and in 2000, he and Debbie Perkins began the Chapter’s first support group for those in the early stage of the disease and their caregivers – a group he is still involved with today – and is a facilitator for two other Association support groups. Schaefer is a sought after speaker who openly shares his experiences and knowledge to help others and has served as a First Responder Trainer for the VA Department of Criminal Justice Services. At one time, he had trained every State Trooper in the Commonwealth and continues to provide First Responder Training through the Chapter. Schaefer was appointed by Governor Mark Warner to the Virginia Alzheimer’s Disease and Related Disorders Commission where he served for 10 years as Chair of the Training Work Group. His book, Alzheimer’s: The Identity Thief of the 21st Century, was published in 2010.

Delegate Christopher K. Peace:

Delegate Peace represents the Virginia House of Delegates’ 97th District, which includes part of Hanover, King William and New Kent Counties, and serves on the Appropriations, Health Welfare and Institutions, and General Laws Committees, as well as several statewide boards including Criminal Justice Services Board, Joint Commission on Health Care, Virginia Commission on Youth, Human Services & Public Safety Committee of the Southern Legislative Conference (SLC), Human Services & Welfare Committee of the National Conference of State Legislatures (NCSL). He has carried important legislation
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relating to guardianship, home healthcare and assisted living care that has helped improve the quality of life for persons with dementia. During the last legislative session, Delegate Peace led the fight to increase funding and coverage for the Public Guardianship Program in Virginia.

Seniors Guide:

Seniors Guide, published by Ross Publishing, Inc., has been an advocate and partner for the last six years as a sponsor, promoter, and friend of the Alzheimer’s Association Greater Richmond Chapter. Their efforts to support the Chapter include generously donating advertising space in their publication to the Chapter to promote and publicize activities like the Walk to End Alzheimer’s, A Round to Remember, The Conference on Dementia, and general Chapter services and information, such as Know the 10 Signs.

“We are truly grateful for the continued advocacy that these honorees provide on behalf of local families,” added Peterson.

Past honorees include: 2008 – The Honorable John M. O’Bannon, III; The Honorable John S. Reid, Andrea McDaniel of NBC12, and DOMINION; 2009 – The Honorable Edd Houk, Alex Nyerges, the Director of the Virginia Museum of Fine Arts; and Genworth Financial; 2010 – Alzheimer’s Training for First Responders by the Department of Criminal Justice Services, Dr. Peter A. Boling, Senator Mark Warner, and Markel Corporation; 2011 – The Honorable Franklin Hall, Mrs. Phoebe Hall, Dr. Ayn Welleford, and Mary Washington Healthcare; 2012 – Senator Steve Martin, Dr. Patricia Slattum, and Don and Christy Talbott; 2013 – Lynne Seward; WWBT NBC 12, and WXGM Xtra 99.1 FM.

To learn more about becoming an Alzheimer’s advocate, please visit alz.org/grva

Why I Walk – Jowanda Summers

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My name is Jowanda Summers and I Walk for my family and Great Grandma Flora.

When I was only four, my father died and a few years later, my mom remarried. I remember my brother and I feeling overwhelmed by the acquisition of a new family – new grandparents, uncles, aunts, and cousins.

The very first large family gathering was a birthday party for Great Grandma Flora, and I remember my first impression of her was that she definitely looked like a Grandma – kind eyes and neatly-styled white hair.

A few months after that party, we found ourselves visiting her in the long term care facility that she had been moved to.

When we arrived, I remember overhearing the adults whispering things like, “she can’t remember how to count,” and “she was wandering lost in the street,” and “she forgot how to eat,” and worst of all, “she doesn’t know any of her children.”

My brother and I couldn’t imagine how someone could forget how to count, when to eat, or forgetting their own children. We ‘knew’ our Mom could never forget us.

When my brother and I finally entered the room, we saw a frail woman in bed with wild eyes and long hair which was sticking out in all directions. Her mouth moved constantly but she wasn’t speaking. Her eyes met mine and she began repeating the sound “bababa” over and over. To my dismay, she reached down from the bed and grabbed at me. I cringed away and grabbed Mom’s leg. My brother cried and was taken outside.

How could this possibly be the same woman we had met just a short time earlier?

My Mom kneeled down and told me that “bababa” was Grandma Flora’s way of saying baby and that she wanted to hold my hand. She reassured me and said that she would hold my other hand if I would let Grandma Flora hold my hand.

I tentatively held up my hand toward the bed and Grandma Flora reached out and took it. Her hand was cold and thin and she had a tight grip. She rubbed the back of my hand repeatedly with her other hand and she continued to babble. It seemed as if she held my hand forever and I grew restless. My Mom replaced my hand with hers and Grandma Flora screeched her displeasure as she was happy holding the hand of a child but not that of an adult.

Tears welled up in my eyes and I begged to leave and as we left, Grandma Flora continued to reach out toward me saying “bababa” and I felt the weight of guilt on my heart.

When we got home, Mom asked if I would like to give Grandma Flora the large doll that I had been given for my birthday the year before. She said that she thought that Grandma Flora might like to hold the doll and that it might help her to keep calm. I agreed, eager to do something to help.

The following Sunday, Mom and I went for a visit, just the two of us, and I brought that doll.

The doll had long blond hair and large blue eyes. It was a child doll not an infant doll, but Mom wrapped her in a soft pink baby blanket and explained to me that the doll was about the size of an infant and that Grandma Flora could hold her and feel like she was holding a real baby.

As we entered the room, Grandma Flora began babbling “bababa” loudly. I took the doll to her and she cradled it in her arms, stroking the doll’s hair and he got quiet as she rocked the doll in her arms. I remember my heart filing with joy as I watched her with that doll.

Over the next 10 years, we visited Grandma Flora in the nursing home often.

The doll remained with her and we periodically replaced its clothing and blanket. Grandma Flora was never capable of expressing a name for the doll and we simply called her Baby.

At the age of 17, I accepted a job as a nursing assistant in that facility and that is where I first saw the diagnosis of Alzheimer’s disease in relation to my Great Grandmother’s name. Grandma Flora still lived in the same room and her condition had remained much the same.

During this time, I truly began to understand the devastating effects of dementia.

I learned to feed and dress patients who could no longer care for themselves and I often stayed late to feed Grandma Flora and brush her hair.

She stroked my hand at times and screeched at me at others.

Sometimes holding Baby helped and sometimes nothing did.

I answered to many names that were not mine and I played the part of loved ones long gone.

I learned that simple actions and gestures can sometimes buy a few moments of peace, but in time dementia always wins.

So I Walk for Great Grandma Flora.

I Walk for the 5 million people with Alzheimer’s disease.

I Walk for the 15.5 million personal caregivers.

I Walk for a cure to a disease that currently has no survivors.

If nothing is done to stem the tide, soon there will be 15 million people with the disease and 45 million caregivers.

The Walks to End Alzheimer’s may be over, but there is still time to donate.

Get involved and make a difference for the millions of Americans with Alzheimer’s disease or other dementias!

Northern Neck – Middle Peninsula: Donate at http://bit.ly/ALZ_Walk_NorthernNeck

Fredericksburg: Donate at http://bit.ly/ALZ_Walk_Fredericksburg

Tri-Cities: Donate at http://bit.ly/ALZ_Walk_TriCities

Richmond: Donate at http://bit.ly/ALZ_Walk_GRVA