Jun 222011

I have seen what Alzheimer’s does to an individual first hand. My mother died from Alzheimer’s,  my aunt died with Alzheimer’s, and I have an uncle living with the disease.

Late this afternoon, as I walk for two-and-a-half hours through downtown Chicago, I will be thinking about all three of them. They are why I work for the Alzheimer’s Association, and why I am participating in the Alzheimer’s Association Longest Day™.  I am committed to fundraising for people with Alzheimer’s because I want to make sure families and individuals affected by this disease receive needed support and resources.  I am proud to be part of an organization that is there for people when they seek help.

I have a hope that one day, we will find a cure for Alzheimer’s and can celebrate that no one else has to live through this disease. It will take endurance to get to the finish line, but we can see an end to The Longest Day.

Margy Batora works in Donor Services at the national office of the Alzheimer’s Association.  She enjoys a good walk in the city, especially when she is raising funds for Alzheimer’s.

Jun 212011

Today, I am running and walking the streets of D.C. Why? Because  I am participating in the Alzheimer’s Association Longest Day™ in honor of the millions of people around the world living with Alzheimer’s.

I’m proud to join with my co-workers in this effort to raise awareness and to honor both those living with Alzheimer’s and the millions of caregivers providing love, attention, and care to their family members or friends. After meeting our wonderful advocates at the Alzheimer’s Association Advocacy Forum, I am in awe of the resilience of people and families who are affected by this devastating disease.

I have worked for the Alzheimer’s Association for six months, and I dedicate my work to my great uncle who is living with Alzheimer’s and to the people across the country I have met living with neurological diseases like Alzheimer’s and Parkinson’s.

Today, during the longest day of the year, I am running and walking because I dream of a world without Alzheimer’s. I hope that my contributions, both now and in the future, will get us one step closer to that goal.

Jennifer Sheridan is a lobbyist at the national office of the Alzheimer’s Association.  She spends her free time exploring D.C. and is constantly in pursuit of the best cup of coffee in town. Today she is participating in the Alzheimer’s Association Longest DayTM, a sunrise-to-sunset relay supporting those affected by Alzheimer’s disease.

Jun 212011

Today I am walking as part of the Alzheimer’s Association Longest Day™ in honor of my mother’s brother, Armand Paluzzi, and my father’s brother, Patrick Burns. My Uncle Pat was diagnosed with Alzheimer’s a few years ago. He had to leave his wife and his home to move into a full-time care facility, where the disease quickly and sadly progressed. My wonderful Uncle Pat passed away from this horrible disease shortly thereafter.

My Uncle Armand was diagnosed a few years ago but thankfully is still living at home. He recently went on a golf vacation with his wife, my Aunt Jan — which was such good news to hear. Both of my uncles were and are loving, generous, brilliant and hard working entrepreneurs whose example I treasure.

I have been a caregiver for someone with a serious illness in the past, and I know that taking care of someone with a serious illness takes essentially ALL the endurance, love and patience that you possess, along with incredible reserves of willpower and energy that you don’t even realize you have. I know how challenging it is to find hope and to “keep going” when it seems utterly impossible on some days.

I decided to participate in this endurance event because it’s a truly great way to raise awareness for those living with and caring for those with Alzheimer’s – people who go the distance and endure with love, courage and heart on a daily basis, even with no finish line in sight. I will be grateful if my participation in any way helps to shed light on this disease. Today is a great reminder to me of why we do the work that we do at the Association.

Kelly Burns has been with the IT department at the national office of the Alzheimer’s Association for more than five years. She assists in building and maintaining our website, www.alz.org. Today she is participating in the Alzheimer’s Association Longest DayTM, a sunrise-to-sunset relay supporting those affected by Alzheimer’s disease.

Jun 212011

I’ll never forget the first time I saw my grandmother and realized that she didn’t recognize me. It’s like a punch in the gut that you can’t recover from. During the course of the next two years we witnessed her fade away. Alzheimer’s disease is a thief. It stole her memories, her independence, her quality of life and ultimately contributed to her death.

It’s the only cause of death among the top 10 in America without a way to prevent, cure or even slow its progression. It is for all of these reasons that 18 months ago I began working for the Alzheimer’s Association. I want to put an end to this dreadful disease.

Today, I’m riding my bike as part of the Alzheimer’s Association Longest Day™ to the former home of George Washington – Mt. Vernon.  Our first President once said that, ““Ninety-nine percent of failures come from people who have the habit of making excuses.”

I think all too often in this country we make excuses for why we can’t solve the Alzheimer’s crisis. For me, that ends today.

Brendan Burns works in online advocacy for the Alzheimer’s Association Public Policy office in D.C.  He spends his time chasing after two young children and riding his bike. He prides himself on being one of the 100 people in the world who watch C-SPAN for fun. Today he is participating in the Alzheimer’s Association Longest DayTM, a sunrise-to-sunset relay supporting those affected by Alzheimer’s disease.

Jun 212011

Lynn (on the right) with Harry Johns and Cathy Kestler

When I was a kid, the longest day of the year was always one of the most exciting.  School was out and we could play outside until dark — and even stay up a little longer to catch fireflies.  It was a time of no worries.

But today, on the longest day of the year, I am walking more than 10 miles in honor of those who are enduring a life with Alzheimer’s. I am especially walking for Marilyn Beiser, who was diagnosed with early-onset Alzheimer’s disease at the age of 58.

For more than 20 years, Marilyn worked in business administration and accounting, and enjoyed a successful career filled with promotions and awards. Then Alzheimer’s arrived and robbed her of her confidence. Marilyn was fired from three jobs and experienced long periods of unemployment. But Alzheimer’s didn’t stop there: It also robbed Marilyn of her freedom.

It wasn’t the diagnosis that became the longest day for Marilyn.  Her longest day was the day she handed her car keys back to the dealership and stopped driving.

“I cried harder at the dealership than the day I was diagnosed,” Marilyn told me. “I knew I would have to ask friends and family for rides. I felt as though I was turning in my pride and my independence at the same time.”

Despite these challenges, Marilyn shows tremendous strength and endurance in her fight against Alzheimer’s on a daily basis. She is an active volunteer with the Alzheimer’s Association Greater Delaware Valley Chapter and serves as Early-Stage Advisor for the national office of the Association. She is a dedicated grandmother, mother and friend.

She wants to be part of the solution.  So, she asked her neurologist about clinical trials and has now been a participant for more than one year.

Marilyn inspires me to go the distance.  A few hours and miles doesn’t feel like enough compared to the endurance, strength and courage Marilyn and millions of others show every day. Having the opportunity to participate in this new event to raise funds and awareness for with the disease has brought to light in a new way how my longest days (as a mother of two young children and a full-time worker) are nothing comparable to those living with Alzheimer’s disease, their caregivers and their loved ones. And it is a lesson to me to remember those long days as a carefree kid and appreciate those moments while I can.

I will do everything I can to continue the journey and inspire others to be ‘in it’ until Alzheimer’s ends, so we can achieve our vision of a world without Alzheimer’s and the longest days can go back to being about fireflies and great memories.

Lynn works on national event programs at the Alzheimer’s Association, including Walk to End Alzheimer’s™.  Her passions are family, fundraising, great books, snacks and mindless reality television. Today she is participating in the Alzheimer’s Association Longest DayTM, a sunrise-to-sunset relay supporting those affected by Alzheimer’s disease.

Jun 212011

Today, I have the honor of participating in the Alzheimer’s Association Longest Day™.  I’m excited to stretch my legs as I explore the nation’s capital and reinvigorate my passion for fighting Alzheimer’s disease, the 6th leading cause of death in the U.S.  I work at the Alzheimer’s Association because this disease took my grandmother when I was in high school, and I’ll be thinking of her today.

It’s fitting to be taking in some of our nation’s most awe-inspiring monuments as we consider the enormous magnitude of this public health crisis our country is facing.  Alzheimer’s disease is the only cause of death among the top 10 in America without a way to prevent, cure or even slow its progression. Despite this shocking lack of treatment more than 100 years after the disease was discovered, for every $25,000 the federal government spends on care for people living with Alzheimer’s disease, it only spends $100 on Alzheimer’s research.

Staggering statistics aside, my heart breaks for families like mine who have, are or will be touched — slapped really — by this devastating disease. I know my grandmother would want better for my son, and I’m proud to be honoring both of them as an Alzheimer’s Champion.

Wherever you are today on the longest day of the year, I hope you’ll think of the Alzheimer’s Association and the challenge ahead of us as you climb a set of stairs, lug groceries from the car, or walk the dog.  We’re all in this together.

View photos from The Longest Day.

Erin Heintz works in public relations at the national office of the Alzheimer’s Association.  She recently relocated to D.C. from Chicago with her husband, 6-month-old son and golden retriever.  She is participating in the Alzheimer’s Association Longest Day™, a sunrise-to-sunset relay supporting those affected by Alzheimer’s disease.

Jun 212011
My name is Irene Hammer-McLaughlin. My dad Russ (his real name is Shelton, so you can see why he went by Russ!) died of vascular dementia in January 2005. In October that same year, my mom Stella (we won’t even go into her real name) was diagnosed with Alzheimer’s disease.

Today I’m running for four hours as part of the Alzheimer’s Association Longest Day™ because I want to honor my parents, my sister who serves as my mother’s primary caregiver, and all the other families I’ve had the privilege of working with at the Alzheimer’s Association.

One of the smartest things I did for myself and my family was become an Association employee. I have a wonderfully supportive husband and daughter, but still there were times when dealing with mother’s and father’s illnesses that I felt very alone. I didn’t know of many 30-somethings whose parents had forms of dementia. Fortunately, I found an amazing community at the Alzheimer’s Association. This organization has taught me to make lemonade out of lemons, and I will be forever grateful.

I’m starting my run in Hopkinton, Mass., and running (more like wogging – walking and jogging) along the Boston Marathon course from 6 a.m. to 10 a.m.

You may ask why someone would want to run a solo marathon. (Quite frankly, right now, I’m asking myself that same question!)  Well, I wanted to participate in an activity that shows my commitment to going the distance in the fight against Alzheimer’s. It’s not going to be easy to beat this disease. It’s going to take a lot of minds, money and mobilization to make it happen. But, I have no doubt that, together, we can do it.

So, right now I’m going it alone, but I am hoping that next year, during the longest day of the year, there will be others out there right alongside me, going the distance to beat Alzheimer’s.

Wish me luck!

Irene Hammer-McLaughlin is a major gifts officer with the Alzheimer’s Association.  She enjoys running with her husband Mike and biking with her 12-year-old Sarah. She has completed two Ironman events and several marathons. She is participating in the Alzheimer’s Association Longest Day™, a sunrise-to-sunset relay supporting those affected by Alzheimer’s disease.

Post Run Update
Okay, four hours and shower later, I can reflect on my 22 mile run. No, it wasn’t a full marathon, but you know what? Attempting to run a marathon overweight and untrained is an awful lot like having to be an Alzheimer’s caregiver. No one can tell you what it’s going to be like for you. You have to experience it for yourself. Inevitably, there will be some unexpected obstacles to deal with. (Perhaps not the dead skunk or the Mack truck, but there’s probably a metaphorical equivalent.) And, sometimes, even when you make a solid plan, things can go a little awry (like the fact that my water support person underestimated my speed, so I without water for 8 miles). Nevertheless, you find the humor, you get through it, and what doesn’t kill you makes you stronger.

In all seriousness, I’m glad I chose to participate in this challenging effort. Alzheimer’s is tough, and it’s going to take a lot of tough people to eliminate it. I’m honored that I can play a small part, and I hope that after today others will take up the baton, as well.

Jun 212011

My grandfather is living with Alzheimer’s disease.  My stepfather, Morley, serves as a paid caregiver and companion to a man with Alzheimer’s disease, Roy. Today, I am walking for three hours as part of the Alzheimer’s Association Longest Day™  in honor of these men — Poppy, Morley and Roy — and also my grandmother, Granny Bea, who is Poppy’s caregiver.

As I got up bright and early this morning (just before the crack of dawn) to start walking at sunrise, these men were not far from my mind. What were they doing?  And what was my grandmother doing?

See, Granny Bea is Poppy’s wife of more than 70 years. And in all those years, Alzheimer’s is the only thing that has ever separated them. When my grandfather’s needs became too much for my grandmother to handle alone a few years back, he moved to a facility. But that has not stopped her from remaining his primary caregiver.

Granny Bea wakes up early so she can be there when Poppy awakens.  So she, too, needs to ‘pre-empt’ the sunrise. During the very early hours, she tends to her own needs and then takes the short bus ride to his facility to be there when his day begins. By the time she arrives at to his place, she has already showered, eaten, checked her schedule and his, and arranged for her transportation. That’s when most of us would take a break.  But not Granny Bea.

She rides the shuttle carrying things that might make Poppy’s day a little more familiar.  And when I say “familiar,” I mean familiar to her, because not much is familiar to him anymore.  Poppy has the most decorated room of anyone in the facility — full of family pictures, just as their home together used to be. When my grandmother arrives, Poppy is usually still sleeping.  So she collects his dirty laundry and separates it for the laundry service.  When he awakens, she will make sure he is dressed in something clean and respectable, tend to his hygiene and get him to breakfast.

Some afternoons they will dance.  She will hold him close (and sometimes hold him up) while music from the 1920s plays on the radio. Granny Bea says that dance steps are something Poppy never forgets.  He may not know her name or even remember who she is, but when they dance, it’s like Alzheimer’s disease never entered their lives.

When Poppy is tired, Granny Bea will dance with other residents.  Not to the same slow dances she saves for Poppy—but sometimes she will Charleston or Twist or dance Hip Hop —anything to bring a smile to the faces of Poppy’s neighbors.

The rest of the day goes much the same.  She maintains his personal dignity and her sense of partnership, love and family. Then she goes back to her apartment less than a mile in distance but almost a lifetime away.

Walking these three hours will be a challenge for me, as I have not tended to my own physical fitness much in the past nine years of bearing and raising children, but I know the endurance I have shown this morning is nothing compared to the dedication and commitment shown by Granny Bea and Poppy in their fight against Alzheimer’s. I hope we can end this disease before my children have to live with it or through it.  And I hope that if I am called into service as a primary caregiver for someone living with this disease, I will also be strong enough to go the distance like my grandmother.

View photos from The Longest Day.

Julie Sipchen works as a product manager in Safety Services at the Alzheimer’s Association. She lives with her husband and three daughters in Chicago, where they are active in their community and in dance, softball, skating and T-ball.

Jun 172011

On June 21, the longest day of the calendar year, I’m proud to be participating in a new event: the Alzheimer’s Association Longest DayTM, a sunrise-to-sunset relay supporting those affected by Alzheimer’s disease.  Along with my co-workers at the national office in Chicago and our public policy office in D.C., we’ll run, bike, walk and complete other endurance activities to raise awareness and funds for Alzheimer’s care, support and research.

Living with Alzheimer’s disease or caring for someone who has it requires love, patience, endurance and strength – 24 hours a day, 7 days a week. I know because I’ve worked for the Alzheimer’s Association for three years. And while I do not have a family connection to the disease, I can say that I have a personal one.

In my day-to-day responsibilities as a writer, I interview families who are facing Alzheimer’s. And after we work together, I consider these individuals to be friends.  I feel a strong personal responsibility to represent their experiences accurately in website articles, brochures and magazines published by the Association.  But I never feel as though I can depict the true courage they display on a daily basis. It’s indescribable.

On June 21, I plan to walk and run (for three hours!) along the National Mall in D.C. to honor those affected by Alzheimer’s disease. I know that the struggle of those facing Alzheimer’s is ongoing, and I want to help.  It’s the least I can do.

If you’d like to get involved in the Longest Day, please follow our activities on June 21 by checking this blog regularly for updates.  You’ll hear from my co-workers who will be getting active in a variety of ways for the cause—and you can donate to support their efforts.

Brett Armstrong works in communications at the national office of the Alzheimer’s Association.  She enjoys reading as many books as possible and running alongside her four-legged family member, Millie.

Jun 102011

Blood test for Alzheimer's?Oxidation and free radical damage are natural occurrences as our bodies are subjected to toxins and stressors from everything we encounter throughout our lifespan. When oxidation occurs, our bodies respond in the best way they know how: they reach for protective resources from within our cells to combat the damage and maintain our health. If these resources are unavailable, inflammation will occur. The processes of oxidation, free radical production and cell damage are thought to be involved in cancer, heart disease, Alzheimer’s disease and even aging itself. Inflammation is also known to be part of many disorders as well.

In a recent study* published  in the Journal of Alzheimer’s Disease, researchers induced oxidation in blood samples from Alzheimer’s patients and found that it was lower in a natural steroid called dehydroepiandrosterone (DHEA) as compared to healthy people. DHEA is a hormone produced naturally in the adrenal glands. The body then converts it into the hormones estrogen and testosterone. DHEA helps the brain work and protects it from damage. Interestingly, the level of DHEA in the body peaks between ages 20 and 30 and then decreases progressively with age. This difference in DHEA levels observed in the present study between Alzheimer’s patients and healthy people means that a simple blood test could potentially be used to help diagnose the disease.
In blood taken from healthy people, oxidation led to a 53 percent increase in DHEA. However, when the test was repeated on blood from people with Alzheimer’s, there was a much smaller increase in DHEA — around 14 percent for people with mild Alzheimer’s and just 4 percent for severe Alzheimer’s.

The researchers hypothesize that in people with Alzheimer’s, the brain has used up the chemicals needed to produce DHEA in an effort to protect the brain. So, when treated in a lab, blood from healthy people can produce more DHEA, but not blood from Alzheimer’s patients.

It’s not clear yet exactly how reliable the test would be in practice. The differences in DHEA between healthy people and those with the early stages of Alzheimer’s may not be big enough for the test to accurately identify Alzheimer’s until the more advanced stages, which would limit its usefulness.

There also were signs that the test could give different results for men and women, although it is difficult to say with the relatively small number of people in the study. The study looked at just 86 people.

This study raises the possibility of a new simple blood test for Alzheimer’s that could be used alongside the current methods of diagnosis, which include a medical history, neuroimaging and tests of memory. Certainly, the results of this study will need to be validated on a larger sample of subjects, but the findings are quite encouraging.

* G. Rammouz, L. Lecanu, P. Aisen, V.Papadopoulos, A Lead Study on Oxidative Stress-Mediated Dehydroepiandrosterone Formation in Serum: The Biochemical Basis for a Diagnosis of Alzheimer’s Disease. Journal of Alzheimer’s Disease, May 4th, 2011.

Michael S. Rafii, M.D., Ph.D.

Director, Memory Disorders Clinic
Associate Medical Core Director, Alzheimer’s Disease Cooperative Study
University of California San Diego

This post originally appeared in Alzheimer’s Insights, an ADCS Blog.

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