Sep 282015

Four years ago, Mom quit her job so that she could come help me with my twin boys after they were born. I was an exhausted first-time mom who had no clue what I was doing. It was a huge relief to have her by my side during that time.

I started to notice little things about Mom that were different; rather than read too much into anything, I figured that we were both just exhausted. Then the little things started to happen more often. After many doctor’s appointments and tests, my parents visited the Mayo Clinic. It was there, in September of 2011, that my mom was diagnosed with early-onset Alzheimer’s disease at the age of 59.mb1

I was stunned, paralyzed with fear. People that young didn’t get Alzheimer’s, did they? Would she wake up and just not know me? What is Alzheimer’s, really?  Now what? What do we do?

These were all questions that went through my head. To be honest, they still do. I lived in denial for a long time, doing more research than I knew what to do with. The doctors were wrong, I thought. Some days she seems fine!

It took me a long time to accept the “new version” of Mom. I would get so frustrated, not knowing how to comprehend the disease. I finally sat down with her one day after we put the boys down for a nap, and I asked her what it was like. I wanted to know. I wanted to understand.

mb3She tried as best as she could to explain her thoughts and feelings to me. We cried a lot; we still cry a lot. My mom is my best friend, and her diagnosis has been a long slow process for me. I knew then that I needed to do something to fight for Mom, and fight so I don’t have to live with this disease myself.  I needed to find a way to deal with what was happening and to surround myself with people that understood.

Since I can’t change Mom’s diagnosis, I decided to fight like crazy to change it for someone else.

This last weekend was my second time walking in the Walk to End Alzheimer’s in St. Cloud, Minnesota. Joining Walk to End Alzheimer’s is about more than just raising money for me. While it’s so important to fund research that leads to a cure, my biggest mission is to spread awareness. I want to educate people about what Alzheimer’s really is, and how the ability to complete daily tasks that so many people – including me –take for granted are a huge struggle for my mom and so many others with the disease.  Connecting with others in our community at Walk who understand what we are going through is so comforting, and uniting to make a difference is such a great mb2feeling! Being involved with Walk to End Alzheimer’s has been very therapeutic for me, because I know I am working hard to make a difference. I also know my mom is proud and grateful for what I am doing.


Our family has always been very close-knit; while it’s not always easy, we try to maintain traditions and create new memories, because we are in this together. We understand how each other feels. We are going to fight endlessly so that others don’t have to slowly lose their mother the way I am. This is not a disease that should be hidden or kept quiet. Alzheimer’s is taking over our population, and people need to know what’s happening. We need to talk about this disease. We need to help educate people. We need to Walk.


About the Author: Meghan Blenker, 30, is a mother of three. She Walks as Team Captain of Grammy’s Gang

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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, Western and Central Washington 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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Aug 202015

My mother told me, when I was rather young, that no one’s soul ever dies. I imagine that each memory is a small flame, burning amidst so many others. They eventually create a swirling, shimmering glow, illuminated by love, flying up, up, up, until they light the sky with a brilliant glow.

As we walked through the halls of the clinic, I spotted a ninety-year-old woman on her bed, eyes wide, mouth open as if trying to scream. No sound came out. Her breath came in heavy gasps. A shriek, as a patient slumped over in his wheelchair. His orange juice splattered across his white t-shirt. A moan, as patients cast slow, lingering glances at random objects, their tennis-balled walkers gliding slowly across the cold, tile ground. A yell. A patient’s flare of anger at an invisible phantom, lurking behind the humming refrigerator. A groan. Patients forget, their old minds giving way beneath the weight of their disease. A cry. Another memory casually fizzled into the air. Wearing a red uniform, a nurse guided us into another depressing room, then another, and it seemed like the corridors and rooms were endless. Dark beige walls and dim lamps created a somber, gloomy effect, which is probably an understatement. Finally, we reached the hallway which led to where my grandmother was. Maliha, my grandmother.haris2

Silently, we walked to the television room, where there was a large group of elderly, white haired men and women, each focusing on the TV, although it was clear to me that they had no idea where they were or what was playing on that strange, small sound omitting box. Scanning the room, I finally located my grandmother in the crowd, sitting and chatting with another patient in her native language, Farsi. Because she was the only one in the entire room who was saying anything, we walked over towards her. Once she looked up at us, my mother and father bent down and kissed her on the cheek, and, as usual, there was not a significant sign of recognition radiating from her. However, she did say hello and converse with us; some friendly habits die hard. My sister gave me the usual quizzical looks whenever my grandmother would address her, due to my grandmother’s no longer sensical or straightforward phrases. Then, she looked me in the eyes, an unfamiliar look on her face. Studying her very closely, I noticed a food stain her collar. Her hair was turning gray. Her eyes, though, were the same as ever. She said to me, “What is your name, honey?” Each word came out with a struggle; she was slowly losing her English. I remember the precise way she said those four words: Long, drawn out syllables and consonants fighting, clawing their way out of her quivering lips. This question was common. I usually simply replied and told her my name over and over. However, it was as if suddenly, I could not speak; my whole body went rigid. Tears welled up in my eyes, and my throat constricted. Slowly, my palms went damp, and, in a long, reluctant, moment, I quietly mumbled my name to her. Distractedly, she nodded and smiled, clearly having no clue as to who I was. She continued to speak nonsensically, but I could not take it anymore. Feeling suffocated, I excused myself, and I burst out of the room and went to the bathroom.

Perhaps I should not admit it. Maybe I should hide it out of fear of being judged, but I will not. I will tell everyone: I cried.

harisNever again would my grandmother recognize me. It is not fair that someone who was once a kindergarten teacher, who had done so much for me and my mother, was now robbed of what was so rightfully hers, her memory. Nothing belongs to one person more than their own thoughts and memories, but hers were taken from her. I could not, perhaps still cannot, understand why she was chosen, why she was the one to lose her own beliefs, theories. It is one of the questions I would ask God, or whoever or whatever took my grandmother from me.

When I felt more relaxed and slightly less distraught, I walked back out. Quietly strolling down the hall, I stopped at her room. No one was there because my parents, sister, and grandmother were in the television room. So, slowly, I crept inside and sat on the bed. Reaching under her bedside table, I brought out a box my mother made for her, filled with pictures of my grandma, mother, uncles, aunts, cousins, and friends. As I looked, I suddenly stopped. In front of me was a picture of my grandmother. Standing in front of a tree, she looked to be in her mid thirties, with long black hair. All my life, I had been told that my grandmother was a beauty, so I was not surprised by her striking appearance. Instead, I was transfixed by the depth of her calm, knowing gaze, and the picture revealed a profoundly subtle side of her that I had never seen in other pictures. Her smile showed no teeth, just a small upward curve of her thin lips, and there was, somewhere, a shimmering inward beauty radiating from her. That image woke something, it illuminated something, a rare acceptance that I had not experienced since before my grandmother was diagnosed.

Out of nowhere, I remembered a quotation from her favorite poet, Hafiz, that she would always recite: “Even after all this time The sun never says to the earth, “You owe Me.” Look what happens with A love like that, It lights the Whole Sky.”

Looking at the picture of my grandmother, a flood of memories of how she was before the disease rushed back to me. How her eyes twinkled when telling a story, how she would hum when music was playing, how delicious her cooking was, how much she loved me and my sister and my mother, and not once did she ever say, “You owe me”. Not when she raised and cared for my mother, nor did she say it when she watched and gave advice to me and my sister. Now, she was the vulnerable, weak one, who needed our love more than anything in the world. So, we gave our love, as freely and plentily as she had given her love to us. Hiding the picture in my back pocket, I carefully closed the lid of the picture box. Stowing it beneath the table once more, I walked out to the television room.

Everyone was preparing to leave, so I followed them. When we left, I looked behind me, and for just a brief second, I saw that familiar look of understanding, that twinkle in her eye, the calm smile. It was like old times, when she would tell stories and throw her head back and laugh with me. In an instant, she was Maliha again. But, as all things do, it left.

I am glad, if not relieved, that the last image I can conjure of that day is of my grandmother’s eyes. They are sincere, genuine, and tender, welcoming me into her warm, loving embrace. They are not from a picture, or any clear memory I have of her. Just a figment of my imagination. Sunlight brightens the right side of her face, and I can tell she is outside.  I can almost smell the Earth around her and hear the grass rustle with the soft breeze as the sun slowly sets. I cannot say the image is clear. In fact, it is almost a blur in my memory, like an unsteady camera took the picture, only seen through an unclear, perfect haze. A slight glare from the sunlight taints the view. My grandmother’s deep, brown eyes are wrinkled at the edges, hinting to a smile somewhere else. The image just cuts off abruptly, so I cannot see her thin lips, her smile.

But I am not sad. No, no, all is well. No sadness or grief burdens me. She is there, my grandmother, still there, somewhere. That image makes me happy, not sad, because I know, even though I cannot see it, that she is smiling at me, a majestic, radiant smile.

About the Author: Haris Hosseini, 14, won a top prize in the National Council of Teachers of English Promising Young Writers Program with this essay. He and his family participate in Walk to End Alzheimer’s on Team Kayoumy. They walk in support of his grandmother Maliha Kayoumy, as well as countless others living with Alzheimer’s disease.

Haris’s father is New York Times best-selling author Khaled Hosseini, author of The Kite RunnerA Thousand Splendid Suns and And the Mountains Echoed.

Learn more:
Walk to End Alzheimer’s
Alzheimer’s Information for Kids & Teens
Inside the Brain: An Interactive Brain Tour

Jul 062015

Five years ago, after being diagnosed with Alzheimer’s, my mom Sonia moved from Chicago to Missouri. She lived with my brother for a month and then with my sister for about a week. It was soon obvious that I had to take over the responsibility of being her primary caregiver. We were always inseparable, but now we are more inseparable thandaisy1 ever.

Due to a very long history of Alzheimer’s in my family, I was asked if I wanted to take part in a clinical study, which included a test to see if I carry the gene for early-onset familial Alzheimer’s.* I didn’t think twice. My brother and sister chose not to take it, but the minute it was brought to my attention, I wanted to do it. It was in my head from the beginning – what if I have Alzheimer’s and it is exposed at age 42 or 43? I am almost 40. Who is going to take care of my mother? Who is going to take care of me? I had to prepare myself.

daisy4I worked on getting all of my ducks in a row, taking all the proper measures and precautions.  I got life insurance right away so that someone would be able to take care of my mom and not have to put her in a nursing home. In addition to taking care of mom, I had to be willing to accept whether or not I will have the disease. Three-quarters of my family has passed away with Alzheimer’s. I am the only one of my siblings that wanted to be tested. I would like to think that I inspired my cousins – who are now interested in finding out if they carry the gene – as their mother was recently diagnosed as well.

As for me? The test came back positive. One day, I will have Alzheimer’s.

I don’t think of it; I simply shrug it off. I just see what my mom is going through and know I need to take care of her. In my younger years, I was a bit of a party animal – I owned a sports bar – and now my mom is my main focus in life. How can I be a caregiver to someone I love so much and not stand up for her and her needs as someone with the disease? She is what matters the most.

My typical day is very different from what it used to be. I wake up, make coffee and then wake up Mom. I often have to strip the bed and then take her to bathroom and get her into the shower. Then I brush her teeth, dress her and do her hair and makeup. I take her to work with me at my sister’s restaurant, and she is with me all day until I get off work. We often go on a walk to get some ice cream and go to the park. I end the day by taking her home and making her dinner. After she goes to bed, I go to sleep, and I do everything again the next day. It’s a whole new life.daisy3

The Alzheimer’s Association has been there for me every step of the way. I had already been on team Sonia’s Angels in the Walk to End Alzheimer’s for the past few years in support of my grandma and my mom. When I was diagnosed by my genetic counselor, I received information about grieving, counseling and caregiving from the Association. In my previous life, I had never been an activist; I was the quiet one. Now I advocate for my mom. If you wish to see a change in the world, you have to step up.

My involvement in the Dominantly Inherited Alzheimer Network (DIAN) study means that I take a variety of medications and skills tests. Although the whole group is supportive and loving, the medication is physically very painful for me. All the same, if my participation helps find a cure for someone in the future – whether it’s me or my nieces and nephews – I will take all of the pain. I try to stay positive. Everything happens for a reason, and life is too short to just mope around.

daisy2I help spread awareness because there is a stigma surrounding age and Alzheimer’s. People always tell me that I look 21 years old and can’t imagine that I could develop this disease at any time. The truth right now is that Mom has the disease; I have the gene, but I don’t have the disease yet. That is why I try not to dwell on it.

There is simply not enough money or exposure for Alzheimer’s. We have to get the word out in order to save the future for others. The more awareness we can raise, the better it is for the disease. We need to find – and fund – a cure. Alzheimer’s is currently the 6th leading cause of death; we must make strides to end it now.


*Younger/Early-onset Alzheimer’s caused by a genetic mutation is rare and the vast majority of early-onset and late-onset cases cannot be determined by a genetic test. Health professionals do not currently recommend routine genetic testing for Alzheimer’s disease, although testing for APOE-e4 is sometimes included as a part of research studies. For more information on Genetic testing, click here.

About the Author: Daisy Duarte, 39, is a caregiver for her mother Sonia, 59. Daisy speaks to colleges and other groups to raise awareness in the fight to end Alzheimer’s. Daisy and Sonia live in Missouri.

Learn more:

Genetics and Alzheimer’s
Caregiver Center

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.

Learn More:

For LGBT Caregivers

Caregiver Center

Take the Purple Pledge!



Jun 232015

I am sitting at a dinner party in Deauville, France, listening to my grandfather recount stories I’ve heard him tell a thousand times before; times spent with Peter O’Toole in the desert, his love affair with Barbra Streisand and with other leading ladies, past exploits at card tables and racetracks.omar1

But this night is different. The stories are off; rich details normally embedded like fine jewels are missing. The characters are colorless and the anecdotes lack grounding in space and time – they just seem to float out of place and order. Attempts at humor have been replaced by an obvious air of anxiety and frustration brought on by his trying to remember.

He’s just tired, I think to myself. He’s been traveling too much. Pay it no mind.

But then he starts the stories over again, seemingly unaware that he’s just finished recounting them.

Something is wrong.

This was my first indication that my grandfather had Alzheimer’s disease, and in the subsequent years, many clues would follow.

omar2It’s the quintessential irony — creating a life filled with cherished memories and relationships only to lose them.

A World Champion bridge player, an Academy Award nominated actor, a man proficient in seven languages with a higher IQ than anyone I’ll likely ever meet…Alzheimer’s does not discriminate in its victims.

It has been a slow and steady decline made all the more apparent by a lack of effective treatment or a cure.

So we must unite.

Throughout the month of June, join me in taking the pledge to “Go Purple” for Alzheimer’s awareness and let’s find purplepledgeomara cure together.

Alzheimer’s is a thief — stealing brilliant minds. This disease must be stopped.


About the Author: Omar Sharif, Jr. is an Egyptian actor and spokesperson. An advocate for equal human rights, he is the grandson of legendary Hollywood actor Omar Sharif.

Jun 212015

“There is hope in the future and beauty in the moment.”

The Longest Day has afforded us the promise of this statement.

When my incredible husband Steve was diagnosed nearly four years ago with younger-onset (also known as early-onset) Alzheimer’s, we knew we needed guidance. The Alzheimer’s Association has provided us with that and more.

The Longest Day gave us an opportunity to take an active role. It also provided us with a chance to have friends and family gather and rally around Steve to let him know how loved and supported he is. We honor him by hosting a day filled with some of his favorite activities, and our grandchildren are empowered as they use their small but poignant voices to honor their Gramps and raise awareness. They have even coined the phrase “When life gives you JUDYTEAMAlzheimer’s…make lemonade!” Selling lemonade is only one of today’s activities.

lemonadeWe have run, walked, biked, swam, played horseshoes and danced Zumba. We have spiffed up the exterior of our old beach house, done puzzles and sang. We have shared old memories and created new ones. We have laughed and cried. We have honored those living with Alzheimer’s and memorialized those whom we have loved and lost. This is our day to celebrate life with Steve, and assure ourselves of what can’t be taken from us with this disease—love!SteveTLD

As the sun sets, a soft glow of purple washes across the faces of the nearly 50 people in our beach circle. We take time to reflect on what we have accomplished, and we ceremoniously offer an intention of hope and honor. Each of us ignites our individual light in the sand and then we join them together. As each is lit, we watch the dim light of a single candle grow from a faint glow to a radiant brightness. It’s then that we realize that there is hope in the future glowand beauty in this very moment.

It’s now time for contemplation of what has been achieved today, The Longest Day.

We have raised substantial funds for the Alzheimer’s Association, which has not only been an incredible wealth of resources for us on this journey, but also the force behind making global strides in research, care and education.

We have exhausted our muscles from our various activities. Our faces are sore from the shared smiles. Our arms and shoulders carry the weight of both giving and receiving numerous “strength-giving” hugs.

Our lungs are contented by being filled with fresh sea air. Our hearts are warmed and overflowing with the love and support of our family, friends and neighbors. As a group, we have turned Wells Beach purple to raise awareness. We have fought hard for future generations to realize a time when Alzheimer’s disease is just a memory. We have witnessed the true power of a community effort.endalz15 (1)

Thank you to all who are fighting this good fight! And to those who will face another “longest day” tomorrow…we do this for you.

About the Author: Judy Johanson is care partner for her husband, Steve, who was diagnosed with younger-onset Alzheimer’s at age 59. Together with her family and friends, Judy is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 21, 2015, to raise awareness and funds for Alzheimer’s care, support and research. 


Jun 212015

June 21 is my mom’s 80th birthday, but she doesn’t know that. She doesn’t know what day it is anymore. She doesn’t even know what a birthday is. My mom has late-stage Alzheimer’s.

Today, on her birthday, I am climbing a mountain in her honor by participating in the Alzheimer’s Association’s annual event The Longest Day. Along with 10 friends, I’m climbing Mount Whitney, the tallest mountain in the continental U.S., to raise money so that the Association can continue to provide support for people living with this disease. The climb will take 16-17 hours to complete and is certainly the longest hike I have ever undertaken. Every step is for Mom.JOHNBTLD

We started this hike in the darkness at 3 a.m. and we are still on our way to the top. As I take each step up this incredible 14,500-foot mountain, I am remembering all of the steps it took to get to this moment: all the training hikes and gym workouts, all the fundraising, and all of the long, seemingly impossible days of my mother’s disease.  All along the way, The Alzheimer’s Association was an invaluable resource for advice, referrals and strategies for handling my mom’s illness and decline.
JOHNTLDMy mom’s Alzheimer’s diagnosis was devastating news for the whole family, but especially devastating for her. She always loved learning, reading and discussing current events. The first in her family to go to a four-year college, she worked for Planned Parenthood and as a lobbyist for the Oregon Legislature. The last job she held was as an editor for a bilingual newspaper. At the same time, she was studying to become an ESL teacher.

johnmomThen she started forgetting things; appointments, bills, daily tasks. She lost her purse over and over again. She couldn’t read books anymore, since by the time she would get to the end, she had already forgotten the beginning.

She ended up losing her job due to her frequent mistakes. She lost friends because she would forget to call. She forgot to pay her taxes and her rent. She was ashamed of her symptoms, and became really good at hiding them by writing everything down in a notebook and carrying it with her everywhere. But then she started losing the notebook, too.

Mom forgot the day, the month and the year. She even started imagining she was living in the past. Eventually she forgot her own name and her family, including me.johnfriends

Every step of the way, The Alzheimer’s Association was there with the advice and resources I needed. Now I am seeking to give back so that others facing this awful disease can be supported. I’m climbing because it’s my mom’s birthday, and because I can’t celebrate with her anymore. Participating in The Longest Day seems a fitting tribute to her 80 years of life.  My team and I have raised over $15,000 and know that it will help a lot of people dealing with this disease.JohnGroupTLD

It feels empowering to be able to give back and to honor my mom in this way on her birthday, The Longest Day.

About the Author: John Binninger and his friends that make up The Whitney Summiters are participating in Alzheimer’s Association The Longest Day®. Click here to visit John’s team page.

Jun 212015

Good morning! Today is an important and exciting day in the making. This morning, members of the San Diego Harley Owners Group (H.O.G.) chapter are joining members of the San Diego Bridge Academy and Redwood Bridge Club in the fight against Alzheimer’s.  The American Contract Bridge League (ACBL) leads the fundraising to benefit the Alzheimer’s Association on The Longest Day, along with raffles, a fine art silent auction and an appearance by Chopper the Biker Dog!

Forget what you may think about people who ride motorcycles or people who play bridge. Not only are many of the stereotypes untrue, but Harley riders are just as active in their communities and willing to step up and make their voices heard as the bridge players are. Together this diverse group of backgrounds will ride across the 30+ bridges of San Diego and play bridge from sunrise to sunset.

Alzheimer’s affects more than 60,000 people in the San Diego area, and with the average age of an ACBL bridge player being 69, those in our community are susceptible. We are speaking with local television stations first, and after that, we will be making a stop at the local Harley dealership to bring together a unique group of Harley riders and bridges players so that our voices can be heard together.trishwhite

I myself have a personal connection to Alzheimer’s disease. When I was diagnosed with a plaque on my brain in 2010, I knew I had to stand up. I spent very little time feeling sorry for myself, and told myself that I couldn’t give up. I could lose my limbs and live without them, but my brain? Not my brain. My brain is my best friend.

Bridge is known as “aerobics for the mind.” I also have focused on mentally-stimulating games such as Scrabble and crossword puzzles. I stay social in order to keep myself sharp. I do whatever I can, as I always have in life, because sitting down solves nothing. It’s time to stand up!

There was a day recently when I wasn’t feeling up to going to my evening bridge game, but something inside me told me to go anyway. I ended up meeting a woman whose husband was just diagnosed with Alzheimer’s. They have only been married for five years. It was so important for her to see the information available and have someone to talk to and discuss caregiver issues with. I hope that today’s event will create progressive thinking in the world of bridge. Alzheimer’s creates a devastation of families; everyone in the family unit “gets” Alzheimer’s. Our voices are more powerful together, and we know we will be heard today.

I thank Robin Parker of the San Diego H.O.G. chapter who helped Harley riders set a goal of $1,600 on top of the bridge clubs’ goal of $2,500. I thank Robert Hartman, CEO of the ACBL.  I thank David Walters, the best bridge teacher imaginable, for lecturing today – half of the proceeds of his speech will go towards the cause. I thank Stuart Showalter, president of the Redwood Bridge club. And I thank all of the people who have made a difference in the fight to end Alzheimer’s.

About the Author: Trish White is an avid bridge player participating in Alzheimer’s Association The Longest Day®. main site  |  Research  |  Advocacy  |  Care and support  |  Message boards  |  Disclaimer  |  Donate  |  Contact us  |  Sign up for e-news
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