Sep 162015

Seattle Seahawks’ J.R. Sweezy is not the tough offensive guard most people know when he’s around his wife Gissell. “She’s everything I ever wanted. I became so much happier when she came into my life. She’s my support system,” he says, lowering his gaze shyly, petting their black Labrador Otis.

Gissell laughs, returning his smile. “There’s that soft side of him that people don’t see,” Gissell says. “I think everyone sees him as just a football player. Not me. That’s just what he does for a living.”

J.R. and Gissell met in sixth grade after she and her family moved to Mooresville, North Carolina. “We were in homeroom together,” said Gissell. “We would laugh and talk, and we became friends.”

Although Gissell wasn’t in the same popular crowd as J.R. in high school, they continued their friendship and attended senior prom together. “We dated and broke up three times from high school into college,” said Gissell. “I was done after the last one,” she said, as she shook her head laughing.

Gissell attended Peace College while J.R. attended NC State University to play football, following his paternal grandfather Roger’s footsteps. “It took time for me to grow up and realize how special she is,” said J.R.

They led separate lives for five years until running into each other at Duckworth’s Grill while visiting family. “We talked for a month after that and then were back together,” said Gissell. “I felt peace. When we’re together everything makes sense.”

J.R. nodded his head with assurance. “We make each other better.”seahawks

Soon after getting back together, J.R. was drafted and selected by the Seattle Seahawks.

“Football is something I’ve always loved, and I’m blessed enough to do it,” said J.R. “We’ve won a lot of games because of our fans, the 12s. It’s the only place like that in the entire NFL, and I’m lucky enough to call it home,” he said about Century Link Field.

“I love it. I get goose bumps just thinking about running out of that tunnel. The 12s are so loud; they’re great fans—they set the mood and keep us going.”

J.R. believes the 12s will also support him in raising awareness about Alzheimer’s disease. “They go above and beyond, and I think they’re doing that outside of football too.”

J.R.’s Papaw Gene, a successful businessman, was diagnosed with Alzheimer’s disease nine years ago. After seeing his maternal grandfather’s drastic decline last April, J.R. and Gissell decided to create #the12s Walk to End Alzheimer’s team to raise awareness nationally for Alzheimer’s disease.

“If we are raising money and have the right people researching and understanding it, maybe we will find a cure one day,” said J.R. “I want to raise awareness from coast to coast. We’re helping now for the future. It’s too late for Papaw Gene, but not for our kids.”

J.R. only gets to visit his papaw two or three times per year, but even now in the late stages of Alzheimer’s disease, Papaw Gene will sometimes ask, “Is that the boy that plays football?” and reach for his Seahawks hat.

Both of J.R.’s grandfathers were prominent role models in his life. His Grandpa Roger not only played football, but exemplified hard work and taught J.R. “not to doubt myself, to do what is right and to be my own man. He told me that ‘til the day he died,” said J.R.

They were successful men who led by example. “I’ve learned never to take a day for granted. God’s the only one who knows the in-story.” said J.R. “Just like in football, we can’t take a day for granted, because it could all end in one moment.”

Although J.R. was at the Seahawks’ hotel in La Jolla, California preparing for their third exhibition game on the afternoon of August 29, Gissell was at Seattle University Park with her mother-in-law, grandmother-in-law and other Seahawks’ wives and girlfriends representing #the12s team and raising awareness about Alzheimer’s disease.

“We’re soul mates living the dream,” said Gissell. “Every day he works to be a better man—in football and in our personal lives. I’ll do anything for him because he’s the love of my life.”

To read more blogs from the Alzheimer’s Association, Washington State Chapter, please visit this link.

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Sep 112015

Of the 5 million people in this country living with Alzheimer’s, about 200,000 have younger-onset/early-onset Alzheimer’s. It is not an “old person’s” disease. Some people are diagnosed in their 30s, 40s or 50s. One of them was my wife – my sweet Melinda.

Melinda is the reason I Walk to End Alzheimer’s.

Melinda was once a trial lawyer, a scratch baker, an excellent cook, needlepointer, crafter and seamstress. These talents, along with her incredible intellect, engaging smile, laughter and her love for her family made her a wonderful mother and wife.


In 2010, Melinda was diagnosed with younger-onset Alzheimer’s at the age of 54. We were shocked and frightened.  For whatever reason – which I cannot explain but am thankful for – Melinda did not seem to dwell on her diagnosis. She remained cheerful in the face of the disease.

Melinda was in an adult day center four days per week between April and August of 2014 so that I could continue to work to support our family and retain our health insurance coverage. On September 2, 2014, I made the hardest decision of my life, determining that she needed to be placed in a long-term memory care facility.

Younger-onset Alzheimer’s is life-shattering. Younger families have children who see the progression of the disease, and therefore experience the ongoing loss of a parent. Breadwinners in the prime of their careers struck with the disease become unable to work, and if they haven’t worked long enough, they won’t be entitled to disability benefits. Families in the prime of their lives are destroyed by a disease that never takes a day off.

bruce2I Walk with the hope that other families will not have this fate.

The impact on our sons Matt and Ben is impossible to measure. Despite the loss of the mother they once knew, they adapted, rallying to help both her and I deal with the day-to-day challenges we faced.  Thankfully, this has not impacted their education. Matt graduated with the highest honors and found employment with a Big Four CPA firm.  Ben is succeeding at the School of Engineering at Mizzou.  I hope they are able to take away from this journey the love, patience and devotion I have tried to give to their mom and that their experiences will make them better people, as I know mine has made me a better husband, father and person.

I Walk in memory of Melinda.

My sweet Melinda passed away on January 14, 2015. I miss her terribly. I believe she is free from this insidious disease that shows no mercy, and that she is now at peace.

Since Melinda’s diagnosis in 2010, I have immersed myself in Alzheimer’s science and research, attending symposia featuring eminent scientists and physicians whose mission is to find the cause and, ultimately, the cure for this dreaded disease.

Melinda’s Memory Warriors Walk to raise money for research and a cure.

There is an oncoming avalanche facing our society. Of the top 10 causes of death in this country, only Alzheimer’s cannot be prevented, cured or slowed. The thought of losing one’s memory and ultimately one’s dignity is frightening. By participating in the Walk to End Alzheimer’s, we are letting the world know that now is the time to increase the awareness of a disease that will cost our government trillions of dollars in the coming decades if a bruce1treatment or cure is not found.

This is a real crisis for our nation and for the world as a whole. The avalanche is out there, and it will be here before we realize it. Join me today by lending your voice and your legs to the cause in the Walk to End Alzheimer’s – for me, my sweet Melinda, and all of those who live with this devastating disease.


About the Author:  Bruce Friedman Walks on team Melinda’s Memory Warriors. He was a featured speaker at the Alzheimer’s Association St. Louis Chapter’s 2015 annual “An Affair to Remember” gala fundraiser and was recently nominated for a position on the National Advisory Council on Alzheimer’s Research, Care and Services. Bruce was selected in 2014 as the Best Lawyers’ Lawyer of the Year in St. Louis in the area Family Law.

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Jun 262015

Tim, diagnosed with Frontotemporal dementia in 2012, living with HIV

Working in information technology and then for many years as a part of a management team, my career was very important to me. At the end of 2009, however, I realized that I was having trouble focusing on my job, and one day after a lunchtime walk, I felt like I had lost sight in one of my eyes. Thinking it was due to stress, I didn’t tell my partner Ron. I explained it away.

In early 2010, I took a work trip to Denver. During that week I had issues typing and communicating. When I met with my boss to discuss the trip, I had trouble speaking. That’s when I decided to see a doctor. “After talking to you, I think you need to go to ER right now,” he said.  I found out that I had had a stroke, and doctors suspected that several mini- strokes had also occurred, which accounted for my vision loss.timblog

Despite having some answers, I didn’t have them all. After returning to work a couple of months later, I was still struggling to do my job, which resulted in my being demoted. In January 2012, I was laid off. Due to all of the anxiety I was experiencing, I started seeing a therapist, who suggested that I make lists of coping strategies, but I never made the connection in my head to actually complete the tasks.

While in therapy, I was also undergoing testing and not sharing the results with Ron. I would come home and say “everything is fine” very nonchalantly. Ron knew everything wasn’t. “Either you are not communicating properly or you are just not telling me something,” he said. From then on Ron accompanied me to my appointments. We learned that the results of the testing indicated that there was a problem, but no conclusive diagnosis. Ron crusaded to find out what was really going on.  Eventually, in 2012, after many tests and much anxiety, I was diagnosed with Frontotemporal dementia (FTD), which is caused by progressive cell degeneration that affects the frontal and temporal lobes of the brain.  

Ron is my everything. He is my advocate, my only support, and my protector. If it wasn’t for him, I probably would not have received a diagnosis. I don’t even realize how many times a day he helps me make decisions. He’s good at subtly guiding me, as I can get very easily lost in a task. He is always looking out for my best interest. Because of FTD, I don’t have a perception of what repercussions exist due to my actions. I can’t even imagine what my life would be if I did not have him here.

Having been HIV positive for 25+ years, I treat the diagnosis of dementia like HIV; it doesn’t define who I am or what I can do. I don’t let the dual diagnosis control my life. I present myself first – work experience, life experience – and eventually my story unfolds. When I introduced myself to Congressman Cory Booker, I said, “Something you might not know about me is that I was diagnosed with dementia in 2012.” It was amazing how his constitution changed. “I wouldn’t have known,” he replied. It changed his whole perspective.

I tell people who I speak with on Peer-to-Peer Outreach Program calls that they have to look at their diagnosis as a new adventure. (Peer-to-Peer Outreach is a program of the Alzheimer’s Association that connects newly-diagnosed individuals with others living with Alzheimer’s and other dementias via telephone in order to share their experiences.) It’s a new challenge in your life. You will find different ways to accomplish tasks and you will find talents that you never had before. I never used to be able to speak in front of people. Because of my diagnosis, I can now give a speech. I still have challenges, I still have anxiety, but I have been able to do things I couldn’t do before as well.

As a care partner, Ron has a thankless job. I don’t always acknowledge what he does for me. Some doctors have suggested that the word dementia not be used in front of me and I appreciate that Ron is so honest with me about the diagnosis. Individuals living with dementia deserve to have advocates. You need someone who will go to battle for you. Ron does that for me.

I was losing direction and I needed to find a new outlet, so Ron encouraged me to get involved with the Alzheimer’s Association. Being an Early-Stage Advisory Group (ESAG) member has allowed me to let people know that their life is not over – that life is what you make of it. If I had a tagline like the women do on the Real Housewives reality shows, mine would be: “Get to know me first. I am more than my diagnosis.”

Ron, Tim’s care partner

I knew something was wrong long before Tim received a diagnosis. As his advocate, I helped coordinate his medical team and began making plans for the future. We went to an elder care lawyer (who was very helpful) and sold our home that we spent 10 years renovating .A lot of people wait too long to plan. The sooner you do that the better.

Dementia happened to Tim much earlier than it does for most. He was hoping to work up to 15 more years, build funds for retirement and travel. We moved from the suburbs to a 55+ community, and we live a very different life here. Tim and I have attended support groups through the Alzheimer’s Association, but I have also found support in our community by connecting with other caregivers. While other community members are older and their experiences more varied, their support is still valuable. Almost all of the people that are involved in support groups and services in the community are much older than us and it’s hard to relate to one another. Prepare yourself, because as a care partner, you have to realize it will only become even more intense.

You have to seek out advice. You have to be realistic. It won’t get any better. You have to take advantage of every moment together and celebrate what you have. Your relationship will change greatly. There are times when it’s difficult, and it’s usually little things that push you over the edge. You get by, but it’s very difficult. It is very hard to see your loved one diminish in front of you. I love Tim, but he isn’t who he used to be. As a care partner, you sometimes feel like you have the weight of the world on your shoulders.

It is a heavy journey and it is a process, but you do what you can do. It’s not all gloom and doom, but it has been difficult reflecting on the past three years. Neither of us have a career anymore. We had to sell our home and settle into a new place. Amongst all that, we were working on getting Tim’s diagnosis. I lost both of my parents and Tim’s brother and father passed away – we’ve had so much happen. But we don’t give up. You have to make the best of your situation. I want other care partners and caregivers to know that they shouldn’t give up their whole identity. You have to do things for yourself. Our situation is what it is. You have to try and take in every moment you have and hold on to what you can.

As a member of the Alzheimer’s Association 2014 National Early-Stage Advisory Group (ESAG), Tim Kaufman raises awareness of the financial impact of the disease and the value of an accurate and early diagnosis. He also addresses the needs of lesbian, gay, bisexual and transgender (LGBT) individuals living with dementia. Tim and his partner Ron live in Southampton, New Jersey.

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Jun 022015

My name is Grace, and I am 15 years old. For nearly 10 years of my life, my mother was a caregiver for her two aging parents. My grandmother was broken physically, but my grandfather Jim slowly deteriorated due to Alzheimer’s disease, passing in February of 2014. Watching my grandfather lose his identity was one of the hardest situations my family has ever had to cope with. I live with images of how this incurable disease changed him; dealing with the grief of his passing was not easy.grace2

Ever since my grandfather’s death, I have wanted to do something to raise awareness and funds to combat Alzheimer’s. My opportunity came this year in my English class.

For my 10th grade service project, I had to choose a charity or foundation to volunteer for. Naturally I chose the Alzheimer’s Association. I raised $200 and made phone calls to people who had started their Longest Day teams to encourage them in their activities. After that, I took the next step. I set up my own team for The Longest Day, where I committed to use my passion, swimming, as a tribute to my grandfather and all people who have lost their life to Alzheimer’s. On The Longest Day, I will swim 16 miles to “Swim for Jim” as a symbolic tribute to those caregivers who work from sunrise to sunset to care for their loved ones.

People recognized my passion right away and so many were excited to donate generously to the cause. I have nearly reached the three thousand dollar-mark on my Longest Day Web page, and I can’t thank my donors enough for their tremendous support!grace3

This opportunity to raise awareness and funds for Alzheimer’s is much more than a school project. It’s personal. It is a fight for those who have their memories and identity stolen from them. It is a call for others to support the caregivers, researchers and those who have fought this battle. It is a commitment to remember for people who no longer can. It is also a pledge to honor lost loved ones so their agonizing fight will not be in vain.

I hope you will join me on The Longest Day. I can wholeheartedly say that this experience became part of the healing process for me and my whole family. We now have a sense of closure. The donations given and awareness raised will be instrumental in decreasing the number of people who live the longest day every day. Cherish your memories – support the fight to end Alzheimer’s.grace1

About the Author: Grace Arredondo is from Charleston, South Carolina. She swims for her high school swimming team, the Shadowmoss Sharks summer league team and The City of Charleston’s Southern Marlins Racing Team. She has chosen to use her competitive swimming skills to honor her grandfather, Jim Whaley, by participating in The Longest Day. You can visit her team page here.



Jun 142014

father's day blog 2Father’s Day – or any day, for that matter – is not a typical day for Jason.

Jason is a teenage caregiver.

While many young adults of 18 are thinking about final exams and high school graduation parties, Jason Hatke’s mind is looking much further into the future. At age 46, Jason’s father Mike was diagnosed with younger-onset Alzheimer’s disease. Jason was only 13.

There were signs in the years before Jason’s father was diagnosed. In the 6th grade, Jason was in his school classroom viewing a video about Alzheimer’s with his fellow students. Jason immediately recognized the signs of Alzheimer’s shown in the video as behaviors his father had been displaying at home. He breached the topic with his mother Rita. Then, other issues began to surface. Mike’s boss noticed he had been experiencing trouble with his memory, especially in the afternoon hours after lunch. Soon Mike was seeing doctors to figure out what was going on.

Two years and many tests later, the truth was revealed.

Mike received a diagnosis of Alzheimer’s, and it changed the course of Jason’s life.

At 15, Jason became his father’s primary caregiver. Jason chose to step up to the plate, taking on the task of determining his father’s daily needs. With his mother working full-time more than 30 miles from their home, it became Jason’s responsibility to watch over his father. “It’s an everyday struggle,” Jason says. “There are days when my dad doesn’t know if he’s hungry or thirsty. It makes every day very real.”

As with all Alzheimer’s patients, scary situations arise and the reality of the situation is often raw and emotional. Jason manages to keep afloat while growing up a lot faster than his peers. “I feel like I am closer to 35 than 18,” he says. “Support from the Alzheimer’s Association and aid from other caregiver children coping with the disease has offered me a lot of comfort.” Jason has attended a ranch camp twice since his father was diagnosed. This is where he made new connections, supportive friends and where he met his girlfriend, whose father recently passed away with frontotemporal dementia.

Inspired by his father’s strength, Jason become an Alzheimer’s advocate. He has traveled to D.C. alongside his father to ask representatives to make Alzheimer’s a national priority and encourages other young adults to become involved in the fight. He’s learned to “make every single day count.”

Advocating is a passion that requires compassion, much like Jason’s caregiver role. “It is a blessing and a curse,” he says. “I’ve had to figure out who I am quickly, more quickly than my peers. I see the future more clearly, and I’ve learned the advantages of the family unit and how to not take it for granted. Where other people my age are rebelling and turning against their parents, I have learned how to appreciate mine.”

Although Jason feels a strong moral obligation to remain in Indiana to support his dad, he recently enlisted to join the Navy. That isn’t to say that he doesn’t worry about his decision. He does. He worries about the “what ifs.” What might happen when he returns? What if his father doesn’t recognize him?

Like Jason, many caregivers and family members of people diagnosed with Alzheimer’s experiefathers day blog 1nce feelings of guilt. But Jason’s family is encouraging him in his decision and is committed to him pursuing his passions. His father insists that he won’t “weigh Jason down” by insisting that he stay in Indiana. Until Jason leaves for the Navy, he continues to live every day as it comes, taking to heart the many life lessons he is learning from his father — particularly his attitude toward Alzheimer’s. “He decided to step up and fight this disease. He advocates for progress and change and shares his voice on Capitol Hill. I respect my dad so much because of that,” Jason said.

Jason’s work as an advocate is a calling that he plans to continue to pursue beyond his years as a teenage caregiver, because he knows the difference he can make. “Imagine if my situation was your situation. Imagine how helpless you might feel, and how it would make you feel to lose your memory. My family and I advocate for change on the federal level and in our community to change the future for other families. I fight because my dad fights. I fight for those who can’t. Go big or go home.”

About Jason: Jason is sharing his story during Alzheimer’s & Brain Awareness Month in hopes that he can inspire others to get involved with the cause. He currently serves as an Ambassador for the Alzheimer’s Association, recently attending the Alzheimer’s Association Advocacy Forum for the third time. He is also working on launching a dementia website of his own.

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May 052014

In a record year for the Alzheimer’s Association Advocacy Forum, nearly 900 advocates gathered on Capitol Hill, compelling Congress to make Alzheimer’s disease a national priority. With representatives present from all 50 states, this event once again brought together those affected by Alzheimer’s and allowed them to share their stories, their passion and their personal challenges living with the disease. Chuck Warner was one of the 900 strong.

From April 7-9, my wife Lisa and I had the opportunity to attend the 2014 Alzheimer’s Association Advocacy Forum in Washington, D.C. This was my first experience as a Forum attendee. I was looking forward to meeting other advocates living with the disease and the opportunity to connect with my peers from the Alzheimer’s Association National Early-Stage Advisory Group.

National Early-Stage Advisors represent individuals living with Alzheimer’s and related dementias and use their voice to educate state and federal officials about the need for improved research funding, care and support programs to support individuals and families affected by Alzheimer’s disease. In this role, advisors advocated for people with Alzheimer’s so that they may receive expedited access to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) through the Compassionate Allowance Initiative. They also advocated for the inclusion of an individual living with dementia to serve on the Advisory Council on Alzheimer’s Research, Care, and Services to the National Plan to Address Alzheimer’s Disease.

My experience at the Forum was even more impactful than I could have imagined. This year, a record-breaking 40 individuals living with Alzheimer’s or related dementias registered to attend the Advocacy Forum. Twenty of those individuals were either current or former National Early-Stage Advisors. These numbers represent the largest contingency of individuals living with dementia in the 26-year history of Forum.warner_hill

It was a pleasure meeting fellow advocates living with the disease and I was overcome by the emotional bonding that occurred among this group. The opportunity to spend time with other individuals using their voice and sharing their stories to raise awareness of the unique needs of individuals and families living with Alzheimer’s disease was a powerful experience.

Along with staff from our local Association chapter and other advocates from California, we brought our message to Capitol Hill where we met with Congressman Sam Farr. I have known Congressman Farr for many decades and enjoyed our conversation. Our message – that Alzheimer’s is the most expensive disease in America, with costs set to skyrocket in the years ahead – was heard. But there is more work to be done. The number of Americans with Alzheimer’s disease is growing and at some point the federal government will have to face the financial and economic impact of Alzheimer’s disease on this country.

My experience in Washington, D.C. heightened my resolve to educate others about Alzheimer’s disease and the growing crisis which stands before us. As an advocate, I think it is time for policymakers to get on board and pledge to support the fight to end Alzheimer’s.

Since my return home – and recovery from jet lag – I feel more determined than ever to raise awareness about Alzheimer’s and the consequences for others like me living with the disease, our families and the millions of others who will eventually be impacted. The Forum inspired me to try and do something each day to politely educate those who do not know (or perhaps do not want to know) about Alzheimer’s and the consequences of this disease.

You can join the cause by becoming one of the thousands of Alzheimer’s advocates who are making a difference. At the Alzheimer’s Association, we are working toward a time when we will have effective treatments, preventive strategies and gold-standard care for all people affected by Alzheimer’s disease. To learn more about how you can become an integral part of this movement, visit the Advocacy homepage to become an advocate today.

About the Author: Chuck Warner is a member of the Alzheimer’s Association 2013 National Early-Stage Advisory Group (ESAG). He encourages others living with the disease to be actively involved in planning for their future and engage in a fulfilling life. “An Alzheimer’s diagnosis feels like the end of the world, but it’s not – you can make a difference.”


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Apr 182014

When my husband Jim, who just turned 53, was first diagnosed with younger-onset Alzheimer’s disease, I wasn’t quite sure what was going on. The doctor didn’t tell us Alzheimer’s is fatal. He didn’t tell us there is no cure or that we should get our affairs in order. He didn’t tell us how long Jim might have left. He simply said, “See you back in six months.” If you are lucky, your doctor might refer you to the Alzheimer’s Association. I had to find it on my own.

We couldn’t tell anyone. Jim didn’t want to. He had a top security clearance job. He had a mother that had passed away from this very same disease. He knew more than I did. He kept up with his normal routine. He kept living as if there were a million tomorrows.

At the same time, I was starting to live as if there was no tomorrow. I grasped for anything I could that might keep Jim with me—seizing every opportunity to discuss plans and outcomes and new treatments and experiments and research. I was clutching every snippet of time, trying to create lasting memories for us and our two children (who were 5 and 8 at the time).

It was all so hard to take in. He seemed so healthy and fine 95 percent of the time. He was handsome and athletic and smart and rarely got sick. How could it be that in just a few years, he would be taken from me? From his children? From everyone who loves and cares for him?

For a few very long and stressful years, we kept this secret. Maybe the doctor is wrong. Maybe it is a tumor. Maybe it is mini strokes or a thyroid problem or high blood pressure. Couldn’t it be something as simple as lack of sleep or depression? Then Jim’s brother was diagnosed with Alzheimer’s and subsequently passed away at the very young age of 52. It became apparent to me—to us—that this does indeed run in Jim’s family.

That is when it dawned on me; our children are susceptible to this disease. This nightmare could return to our family again and again unless something is done.

Breaking Our Silence

We had long discussions about our future, our options, our finances, how to tell the kids.

Then Jim lost his job.

We had more long discussions. Jim started having more and more symptoms. Then we decided it was time: time to be part of the solution; time to join the cause; time to make sure the whole world understands what a horrible and heartbreaking story we have along with MILLIONS of others.

Three years ago this month, we joined hundreds of advocates from around the country in Washington D.C. for the annual Alzheimer’s Association Advocacy Forum.

We weren’t quite sure what to expect. I was nervous. Although we had been to D.C. numerous times, we had never tried to speak to a member of Congress before. We had never gone through security to enter a building on Capitol Hill, or walked the marble halls. We listened to the echo of our footsteps as we marched closer and closer to the offices of elected officials who can help change the future of this disease—the future that awaits our children.

I was encouraged to share our story. And so I did. And I cried. And Jim cried. Others in our group cried. It was a relief—a relief to be heard; a relief to be doing SOMETHING to make a difference; a relief to get it behind us.

But we hadn’t really gotten it behind us. Jim was still diagnosed, there still was no cure or real treatments or preventions. Which is why last year, we marched ourselves right back to D.C. again. We weren’t as nervous. We knew the routine. We were prepared.

Now, another year has gone by and there is still no cure, no treatments to slow its progression and no prevention. More federal money has been given for research, but not nearly enough (BILLIONS short) and absolutely no new programs and financial help for those of us struggling each day to pay bills and to take care of loved ones afflicted.

So, last week, Jim and I once again descended upon our elected officials to ask for help as part of the Advocacy Forum. We met with Sen. Mark Warner (D-Va.), Rep. Scott Rigell (R-Va) and asked them to support an additional $200 million dollars for Alzheimer’s research and to co-sponsor the Alzheimer’s Accountability forum

Both of the Congressmen we met with have supported this cause in the past by signing on to co-sponsor the Hope for Alzheimer’s Act. One is a democrat and one is a republican. They are both businessmen. They understand the damage this disease is doing to our country and our Medicaid system. They understand the dire straits we will all be in if a change doesn’t happen. They both agreed to continue to support us and to be champions for Alzheimer’s families.

The Alzheimer’s Association Advocacy Forum is a great way to be part of something so much bigger than ourselves. It is a way to connect with other families from around the country who face the same struggles and the same loneliness and the same frustrations. We have made friends whom we now keep in contact with and support year round. And each year we meet new friends and are able to rally around them and show them the ropes (so to speak).

Believe it or not, there are even advocates that fly to D.C. to participate who have no connection to Alzheimer’s or other form of dementia. They may work with the elderly or be a student who hopes to become a researcher. For other advocates, the connection may not be direct—they heard a friend of a friend suffered through this disease and decided to support the cause. Each year, the awesomeness of the human race amazes me. It is sometimes hard to remember this when you watch the news or get mired in one bad luck scenario after another. But there are good people in this world who care and who are giving of themselves unselfishly to help others, even for people they don’t know and may never know.

I am proud to be part of this and I know Jim is, too.

The three days we were in D.C. were the liveliest and most energetic I have seen him in months. He was joking and talking and enjoying himself. It makes him feel like he is helping his children. He is helping humanity. He is stopping the very thing that is taking him away from everything he holds so dear.

There is power when we work together. I encourage everyone to contact their representative. Let your voice be heard. Let them know we demand a change. We demand a cure. We demand a different future where families are not suffering from Alzheimer’s disease.

About the blog author: Karen Garner, mother of two, works full time and is care partner for her husband, Jim, who is living with younger-onset Alzheimer’s. She shares her journey through her blog, Missing Jim.

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Apr 072014

I’m in Washington, D.C. today as an Alzheimer’s advocate. Why? Three years ago my life took a very unexpected change in course. In 2011 at the age of 56, I was diagnosed with younger-onset dementia, probable frontotemporal dementia (FTD). But my journey, although altered, is by no means over. I have chosen not to let this disease isolate or silence me.

After my diagnosis I found it difficult to locate services and education for people with dementia; everything seemed to be for the caregivers. I started to advocate for more support, and with the help of the Alzheimer’s Association I started a local support group for those affected with Early Stage & Younger Onset Dementias and their caregivers. My involvement with the local chapter of the Alzheimer’s Association led to more advocacy opportunities. I was empowered to share my personal story about this disease, raise awareness and needed funds, while also helping to reduce the stigma associated with dementia.


As an advocate, I have chosen to use my voice while I still can. It gives me a sense of purpose, and a reason not to give up. I encourage others living with Alzheimer’s and related dementias to consider advocacy as a way to feel empowered and engaged in their own lives.

Last year I attended the Alzheimer’s Association Advocacy Forum for the first time. My experience was an extremely stimulating and overall rewarding opportunity. I felt inspired and motivated by my encounters with other advocates living with dementia. They encouraged me to become more involved. I wanted to contribute by using my insight as a person living with dementia, so I submitted my nomination for the National Early-Stage Advisory Group and I was selected to join the 2013 cohort. Over the past year, I have shared my personal story at the National Alzheimer’s Project Act’s (NAPA) Advisory Council on Alzheimer’s Research Care and Services meeting, attended a Senate hearing for the Subcommittee on Labor, Health and Human Services, and Education, and Related Agencies and met with my state legislators.

It is such a great feeling to connect with others living with dementia and reminds me that I am not alone. With my expectations fulfilled from the last year’s Forum I look forward to continuing to encourage Congress to address the needs of individuals and families affected by Alzheimer’s and related dementias through legislative action. As advocates, we have strength in numbers.

Since devoting my time to advocacy, it has given me a renewed purpose in life.

My hope for the future of Alzheimer’s and other dementias is that this disease will get the recognition that is necessary to find a treatment, and ultimately a cure. Although I know that I will not see the day when a cure is discovered, it is my hope that my grandchildren will know a world without Alzheimer’s and dementia. For us to reach this goal, we will have to work together.

Last week the Alzheimer’s Accountability Act was passed. Experts at the National Institutes of Health will now have an annual opportunity to provide Congress with budget recommendations reflecting the current state of Alzheimer’s research and emphasizing the most promising research opportunities.

Your voice is powerful and needed – and you don’t have to travel to Washington to have it heard. All it takes is a minute and a click of your mouse. Join me in asking Congress to fund the research necessary to reach the goal of the National Alzheimer’s Project Act to prevent and treat Alzheimer’s by 2025 by clicking here.

Thank you!

About the blog author: Terry is living with younger-onset dementia and is a proud member of the national Alzheimer’s Association Early-Stage Advisory Group. In 2013, Terry received the Inspiring Champions Award from the National Capital Area Chapter for her contributions to the local chapter. According to Terry, “A diagnosis of Alzheimer’s or other dementia is not the end of the journey.” Terry lives in Manassas, Virginia. She has three daughters and eight grandchildren.


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Feb 142014

Dr_Monica-ParkerDuring Black History Month, the Alzheimer’s Association spoke with Dr. Monica Parker, an African-American family physician, caregiver and assistant professor of medicine about her passion for providing communities with local resources. The theme throughout all of her research and work in the field is simple: Education.

Board certified since 1990, Dr. Parker has practiced primary care and geriatric medicine in rural Georgia and urban Atlanta. Since 1995, she has been practicing with Emory Healthcare, often speaking on the importance of Alzheimer’s education. Dr. Parker has witnessed firsthand what needs to be done to get black communities involved in research through clinical trials.

“We need to educate and better equip our primary care providers,” states Dr. Parker. “If more providers are provided the tools to properly screen geriatric patients for dementia and given knowledge of community resources for their families, we will have better outcomes for the public. We need to better understand healthy aging overall.”

Dr. Parker stresses that education is key. She noticed that most of her upper-middle class white patients were being screened every year as part of a clinical research study at Emory’s Wesley Woods Center, and learning about better lifestyle habits. She knew that these same habits needed to be created and maintained in black communities.

“We needed – and need – to implore more people of color to become involved in clinical trials. We need them to complete memory assessments. Thankfully more and more people in the community have access to these opportunities. It is great to observe the excitement they have in becoming involved.”

Many people in the community were not involved in studies simply because they were not asked. “African-Americans are not unwilling. People were not aware of the need for study volunteers. In fact, African-Americans are very concerned with making things better for the next generation. They don’t want their children to face the same hurdles.”

African-Americans have a higher rate of vascular disease and are two times more likely to develop Alzheimer’s than whites, so the time to get involved is now. “The biggest issue is poorly-controlled vascular disease,” Dr. Parker says. “We know that there is a gene that creates a predisposition to Alzheimer’s. MRI’s can show brain infarcts, which are caused by poor brain blood flow. Hypertension, diabetes and hypercholesterolemia are risk factors for decreasing brain circulation commonly manifested as strokes, or TIA’s. Education keeps people aware of these risk factors and lets them know where to turn and what questions to ask.”

The call to action must be verbalized and disseminated throughout communities. “Churches are the first place people in the community go to seek help and comfort. Church may not be prepared to take on questions about Alzheimer’s and to provide the necessary support. Many smaller congregations have no formal adult daycare program. Pastors want to help identify people in the community that need assistance. They are now able to develop relationships with health providers and offices of Aging. Congregations have hosted forums to let people know what dementia is – and what it is not. In these programs, the average person learns where to obtain information to help cope.”

Since 2010, Dr. Parker and her team have developed community forums, funded  in part and supported  by the Alzheimer’s Association, to inform about the Emory Alzheimer’s Disease Research Center and ongoing clinical studies. These studies have included an African-American Caregiver study, a study about normal women’s aging, and a cerebrospinal fluid (CSF) biomarker study comparing CSF of Caucasians and African Americans with family histories of Alzheimer’s disease. Dr. Parker and the Emory Alzheimer’s Disease Research Center (ADRC) have established these educational forums as one strategy that serves as an excellent mechanism for recruitment of volunteers for clinical studies.

According to Dr. Parker, many of the participants in the COOL-AD African-American Caregiver Education study in the Emory School of Nursing study viewed their participation as an opportunity for getting assistance and as a “service” provided by Emory – not simply as research.

One of the biggest and most immediate concerns still surrounding African-American research is the establishment of a national brain registry.  The Emory Alzheimer’s Disease Research Center has had four African American families donate the brains of loved ones for the study of Alzheimer’s Disease in the last two years. These persons were active research participants before their deaths. This provided an opportunity to learn about their disease trajectory. The brain autopsy is important because the dementia observed may have a different pathologic origin in this population. Dr. Parker has a passion for this work, but she also knows that the decision to donate the brain of a parent or loved one is a difficult decision. Whether a person chooses to donate their brain for research or not, the more information provided to communities about the long-term value of these studies will result in more trials, further research and a possible cure that will secure the health of future generations.

Monica W. Parker, M.D., is an Assistant Professor of Medicine in the Division of Geriatrics and Gerontology at Emory University. Dr. Parker participates in a biyearly lecture series funded by the Georgia chapter of the Alzheimer’s Association. Dr. Parker received a National Institute of Health (NIH) Minority Supplement award to study dementia in ethnic persons in the Emory Alzheimer’s Disease Research Center (ADRC). She also takes her lectures on the road through the Registry for Remembrance, an academic community partnership that helps educate and recruit African-Americans for long term research participation at the ADRC. She is currently a Co-PI on a 3.5 million dollar grant awarded to Emory School of Nursing by the NIH – National Institute of Nursing Research (NINR).

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Sep 192012

For the past eight days, I have been walking—a journey of more than 200 miles in total. I chose to make this trek for each and every one of more than 5 million people suffering with Alzheimer’s disease—and in particular, for my father, Lt. Col. Carl Rabon Stephens, who is a retired army chaplain.

Why am I walking to Washington, D.C.?  Because we need to ensure the passage of $100 million dollars for Alzheimer’s research and support programs in the FY2013 federal budget.  The opportunity to elicit change is now and it begins with me.  My voice is powerful, and I want to use it on behalf of my dad.

My father spent his whole life caring for others in crisis and Alzheimer’s disease no longer allows him to do so. In just one short year, he lost the ability to continue his work with chaplains at Walter Reed Hospital as an expert on how to counsel soldiers coming home from Iraq.  The idea that one day he will no longer have these memories—those of his family and the countless families he has helped—is unbearable.

My father was recently moved into a nursing home because his wife and I can no longer provide the level of care he now requires.  As families each and every day shoulder the tremendous emotional, physical and financial toll of caring for a loved one with Alzheimer’s day after day, year after year, they need action today. They cannot wait and neither can I.

I am walking to Washington, D.C. to bring awareness to this worldwide health crisis and help focus attention on the urgent need for more research funding to help find effective treatments and ultimately a cure.  The current national level of Alzheimer’s research funding pales in comparison to other diseases and the time is now to attack this problem with the same level of commitment that we have other major life threatening diseases.

The investments made in research funding for cancer, heart disease and HIV/AIDs (close to $14 billion combined annually) have had positive results. They have resulted in more lives saved and more money saved in direct care costs. As a nation, we are currently investing nearly $500 million for Alzheimer’s research and Alzheimer’s will cost the nation $200 billion in direct care costs in 2012 – this includes $140 billion in Medicare and Medicaid costs. There is something wrong with this picture!  I am walking to create a picture, a new future and new possibility. I am walking to help change the trajectory of Alzheimer’s disease.

During my journey, I plan to bring this to the attention of any and all I can, through local, regional and national media, and by sitting down with as many elected officials as will meet with me. While my voice is powerful, our voices together are more powerful.

I want to encourage others—volunteers, caregivers, people with the disease, family members, YOU — to join me. Tell your story and reach out to your members of Congress to urge them to ensure the inclusion of $100 million in Alzheimer’s research funding in next year’s federal budget.  Sign up for a local Walk to End Alzheimer’s®. Sign up to be an Alzheimer’s advocate. Be part of the movement to end Alzheimer’s.  There is not a lot we can do for those who have passed on or who are currently fighting this disease, but we owe it to them to do everything we can to treat and ultimately end this insidious disease for future generations.

Together we can shift the course of Alzheimer’s disease.  Now is the time! Please join me!

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About the Blog Author: Dave Stephens is the President of the Board of Directors of the Alzheimer’s Association of South Eastern Virginia. His father, Lt. Col. Carl Rabon Stephens, is living with Alzheimer’s. Dave resides in Virginia Beach with his wife, Debbie, and is the proud father of a 21 year-old daughter. main site  |  Research  |  Advocacy  |  Care and support  |  Message boards  |  Disclaimer  |  Donate  |  Contact us  |  Sign up for e-news
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