Why I Walk Wednesday with Emily Anderson

19 Aug Why I Walk Wednesday_withEmilyAnderson

Why I Walk Wednesday_withEmilyAnderson

I walk to give a voice to those impacted by Alzheimer’s.

For years, I’ve been watching Alzheimer’s take away someone very special to me. Grandma O’Neil is the women who taught me how to sass like no other and to dance like no one is watching. A hard-working woman who did everything she could to support her family, she is the reason I am volunteering and walking to end this terrible disease.

When my grandmother first began experiencing symptoms, everyone joked about the fact that she was misplacing her keys or forgetting her purse, and laughed it off as “just getting old”. Joking quickly turned to worry as she started wandering outside at night. Over the years, Grandma’s sass has turned to frustration as she no longer understands what is going on. She has no memories, no feelings of nostalgia. She is no longer able to recognize the faces of her grandchildren, her children, or anyone else she once cared for.

No one should have to go through that, which is why I am committed to raising funds and awareness for this cause.

Join me and Walk to End Alzheimer’s! 

Why I Walk Wednesday with Wendy Houston

17 Aug Why I Walk Wednesday_withWendyHouston

Why I Walk Wednesday_withWendyHoustonMy dad exemplified loving kindness and generosity. His love for our mom and four children taught us to value life by treating others with respect and dignity. He loved visiting the sick, hungry, and bereaved. He was gifted in many ways, especially woodworking, giving away most everything he made. My favorite gift was a desk he built just for me.

 

In his 80’s, dad became increasingly disoriented and had little sense of direction. His occasional forgetfulness greatly increased, he no longer enjoyed being around others, and he had difficulty forming simple words and sentences. However, even though dad was embarrassed to speak when words wouldn’t flow, he still said a blessing before every meal.

 

As the disease progressed, dad slept more. He became unable to feed himself or lift his head, and communication ceased. He no longer recalled our names and faces – including mom’s – yet she remained his focus. He clung to her, watching her every move with staring eyes. She remained his loyal love, hope and caregiver.

 

My sweetest memory on this journey occurred right before dad’s communication ceased. One day, we were listening to Amazing Grace and to our amazement, dad moved to the seat’s edge and started humming the song. What an amazing gift to our family in his last days!

 

Please join with me and walk so that future generations are alerted to the urgent need to find a cure for this disease.

Why I Walk Wednesday with Caryn Long

10 Aug Why I Walk Wednesday_withCaryn Long

Why I Walk Wednesday_withCaryn Long

I walk for my father, Birch and for my sons, Forest and Randolph.

My dad; Birch, a Navy veteran, was a brilliant and hard-working man who worked his way from the ground floor of IBM through the ranks to a vibrant career as manager and auditor of the company. Even brighter than his professional career was his dedication to his family. His girls; my mother, sister, and myself, were his entire world: his motivation for his every action.

His father had been diagnosed with Alzheimer’s later in life and I will never forget hearing my Dad tell me over the phone through tears that he too had this disease. Our family has watched this vibrant, thoughtful and intelligent man being reduced to a shell of his former self.

I miss the conversations I had with him because he can no longer grasp the words to say, and the frustration in his eyes to be unable to do for us let alone for himself is heart-breaking. It is as if I am trying to hold large handfuls of sand in my hands, while those grains, the elements that made my Dad the amazing man he was, escape my grasp.

My sons have never known the man I grew up with and this alone is a tragedy. Their memories of their Papaw will be tainted with Alzheimer’s and it makes me angry. I walk in honor of my Dad as well as for my sons’ futures – one where this disease cannot impact their lives like it has their Papaw’s.

Please join me and register for the Walk to End Alzheimer’s!

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Why I Walk Wednesday with Carla E. Morin-Diehl

3 Aug Why I Walk Wednesday_WITH CARLA MORIN-DIEHL

Why I Walk Wednesday_WITH CARLA MORIN-DIEHLAs I write this at 2:00 am I am overwhelmed with emotion. We have spent the entire day at doctor’s offices and a trip to the hospital because my father crushed his finger this morning in the car door when we got to daycare. So anxious to get in to see his new friends, he didn’t pay attention to what he was doing. He crushed the tip of his finger, lost his fingernail and had a dozen or so stitches. Bandaged up we left the doctor’s office to have him pull the bandage off in less than 10 minutes. Back for another bandage that didn’t even last an hour. So to the emergency room we went because it wouldn’t stop bleeding. Thankfully they put his finger in a splint so that he can’t remove the bandage.

Why am I writing this? Imagine a man that was the first to graduate from college in his family. Imagine a man that retired at 58 as a vice president of a major corporation. Imagine a man that was one of the smartest men you have ever met. There was nothing that he couldn’t do.

In August of 2008, my Daddy and I went to a Red Sox game in Baltimore, something we did for many years. We always stayed in the same hotel, ate at the same places, this trip wasn’t any different. But my Daddy was. He was confused, a bit disoriented, not knowing exactly where he was. I thought he must just be a bit tired. We enjoyed the game and came home the next day. I told my Mom about how he was and she wasn’t concerned, agreed with me that he must have just been tired.

In January of 2013, our worst nightmare came true. My Daddy was diagnosed with moderate Alzheimer’s disease. When seen by the neurologist and tested, he didn’t pass a test. He was losing his ability to understand even the simplest things. My family was devastated.

2 years ago, I signed up for the Williamsburg Walk to End Alzheimer’s and raised enough money to become a Grand Champion. The morning of the Walk I didn’t have any idea what to expect and honestly I was overcome with emotion. My team was small and together we raise over $3000.00. It was so moving and emotional to see for the first time that we were not alone. That there are so many families that are affected by this disease; I knew I had to do this again.

Last year, I walked in the Peninsula Walk to End Alzheimer’s and once again became a Grand Champion. Our team grew to over 20 people and we raised over $6000.00.

This year I was humbled to accept the Chair position for the Peninsula Walk, raising money for ALZ has become my passion. My Daddy fortunately still knows his family, is still very social, but he has lost all comprehension. He is delusional; he doesn’t remember what happened 2 minutes before. His brain has been robbed by this insidious disease, a disease that is the number 6 killer each year.

You never understand the magnitude of this disease until you are faced with it head on. The disease of abandonment, where people that you thought were your friends, slowly stop calling and eventually go away. The disease of the long goodbye, in essence you lose your loved one twice. My Daddy has been gone now for many years. This man looks and sounds like my Daddy, but my Daddy is gone. In his place is a man that is like a little boy, no filter and carefree.

I look forward to a world free from Alzheimer’s disease.

Thanks for reading,
Carla E. Morin-Diehl

Please join me and register for the Walk to End Alzheimer’s!

Final Purple Passion Report from #AAIC16

28 Jul 13691153_10201968317166958_1793010644719149770_o
WEDNESDAY

Well, all good things must come to an end. I’m pointing my purple sneakers south and heading back to Virginia.

A few final musings before I go:

The Alzheimer’s Association International Research Grant Program makes a difference! I have always quoted to people “The Alzheimer’s Association is the largest nonprofit funder of Alzheimer’s research”…but now I have seen some of the recipients, and they are doing great things! Not all of the scientists here have received Alzheimer’s Association funding, but I heard several of them gratefully acknowledge the assistance.

Technology appears to be playing an increasing role in Alzheimer’s…not just the detection and diagnosis, as you might imagine, but even in care and support. I told you about the session I attended the other day (Monday? Who knows any more??) about technology. In addition to the use of computers to increase the engagement of individuals with Alzheimer’s, I heard how telemedicine is being used to make routine follow-up testing and caregiver check-ins more convenient for people in rural/remote areas. And in the Exhibit Hall there are several companies touting various technological offerings…my favorite being the soft, furry baby seal-like “creatures” that respond to being petted and make soft sounds and move their heads; they are used as comfort objects for people in later stages. This morning as I was getting dressed I saw on the local news one of the robots that was developed to detect changes in voice and language patterns to possibly identify signs of early cognitive changes. I know that not all technology being developed will make a difference for people with Alzheimer’s and their families, but it is another piece of the large puzzle.

– I met a gentleman here who has been diagnosed with dementia. He is here with his wife. She was talking to some of us at the Alzheimer’s Association booth, and she told us that he says joining TrialMatch® was the best thing that has happened since he was diagnosed, because he is now enrolled in a trial. He was depressed after his diagnosis, but now he feels like he is doing something to make a difference. That’s powerful.

I joined TrialMatch®a few months ago, and I have so far participated in one trial which uses testing results from healthy volunteers and those with a diagnosis of MCI, hoping to identify markers that can be used for earlier diagnosis. I encourage all Alzheimer’s Association staff to at least investigate the website and read about trials and what is involved. You are under no obligation to participate in any trials, but it is an easy way to find out whether there are trials for which you qualify. Go to http://www.alz.org/research/clinical_trials/find_clinical_trials_trialmatch.asp

End of commercial!

It has been my genuine delight to be your “eyes and ears” at the 2016 AAIC. I hope if you have not attended AAIC before you will consider it. London in 2017! The experience has given me a much better appreciation for the science aspect of the Association.

Most of all, the experience has given me renewed hope and optimism for scientific discoveries that are going to continue to improve the detection, diagnosis, treatment, and, ultimately, find the cure for Alzheimer’s Disease and related dementias. Believe me when I say there are many brilliant people at work across the globe working toward these goals, and the Alzheimer’s Association is playing a leading role in making it happen!

Thanks to the Alzheimer’s Association for the privilege of being the Staff Liaison for this year’s conference. Thanks to all of the National staff who made me feel like “one of the team.”

Just a few more photos from my album…

With Purple Passion and Great Hope,
Sherry
#AAIC16

The Alzheimer’s Association International Conference®2016 (AAIC®) is the world’s largest forum for the dementia research community. Researchers, clinicians, care providers and students from over 70 countries gather at AAIC to network and discuss the latest dementia study results, theories and discoveries.

AAIC 2016 will be held in Toronto, Canada at the Metro Toronto Convention Centre and will feature more than 90 sessions, 1,700 posters and 475 presentations.

Find out more…

Why I Walk Wednesday with Sarah Smith

27 Jul
Why I Walk Wednesday_Smith

This picture taken at 2007 team fundraiser and is of my then 8 year old son, Jacob Smith

Why I Walk
For me, 2016 marks ten years of volunteering with the Alzheimer’s Association and specifically, the Walk to End Alzheimer’s.  I have witnessed lots of changes in those ten years.  When I first volunteered as a team captain, my grandmother had been suffering from Alzheimer’s for close to ten years.  I got involved with the Walk as a way to fight the disease that was stealing my beloved grandmother. Alzheimer’s ultimately took my grandmother from us completely and sadly, two more family members have also been diagnosed with Alzheimer’s.

However, these same ten years have also brought many joys and successes. For example, I have witnessed my children learning the importance of volunteering and helping others in need.  I have felt the love and support of family and friends as we rally together against dementia, and I have seen the relief in the faces of caregivers when they learn they are not alone.

For me, the increased awareness of Alzheimer’s disease is one of the highlights of these past ten years.  Nationwide, the Walk to End Alzheimer’s event has expanded by leaps and bounds and I could not be more proud!  Last but not least, in my ten years as a volunteer for the Alzheimer’s Association, funding for research into the treatment or prevention of Alzheimer’s disease and other related dementias has grown exponentially.

I Walk to End Alzheimer’s because I am hopeful for what the next ten years will bring!

Sarah Smith
Volunteer Chair, 2016 Western Tidewater Walk to End Alzheimer’s

Join Sarah at the Walk To End Alzheimer’s

Purple Passion Report #3 from AAIC

27 Jul 13737491_10201969343472615_261847005977417791_o
13737491_10201969343472615_261847005977417791_o
TUESDAY
Another beautiful day in Toronto, CA…at least, between the hotel and the Convention Center it appears to be!
The “wear comfortable shoes” advice was certainly not a casual suggestion. The Metro Toronto Convention Center is two very large buildings, and the many sessions are spread out across both buildings and multiple floors. I have told several people that I’m pretty sure the walking that is required is part of the Healthy Brain initiative!
Speaking of exercise, one of the presentations at Monday’s Plenary Session provided results of multiple studies focusing on the impact of aerobic exercise on individuals with Mild Cognitive Impairment. Preliminary results suggest that an intensive exercise program, especially when combined with training and ongoing coaching, may slow cognitive decline in those with an MCI diagnosis. Hmmm…combined with the evidence of the positive influence of exercise on brain health in general, my take-away is that I need to enroll in that Zumba class when I get home!
Lest you think your faithful reporter has been simply soaking up knowledge and writing these reports, let me assure you that this is a working gig. No complaints…I’ve loved every minute of it! I’ve had the opportunity to meet staff from the National office while greeting attendees at various special events, assisting at Registration, and helping at the Association booth in the Exhibit Hall. [I use the terms “assisting” and “helping” because that’s what my schedule says! The staff does the real work, and they are very pleasant and friendly.]
Meeting people has been a true highlight. Among them:
– a woman from the UK who shared with me that in dementia studies in the UK, individuals with a dementia routinely play key roles in the investigations, including many times as “co-researchers.”
– a group of VIP guests who are attending AAIC as part of the “Global Immersion” experience. This group includes major donors and past and present members of the National Board of Directors. These individuals are interested in every aspect of the conference and are highly dedicated to the mission of the Association.
 
There are many opportunities to learn at AAIC. There are Symposia, Plenary sessions, Focused Topic sessions, Featured Research Sessions, and Oral Sessions. And don’t forget the Poster Sessions, where researchers present their work beside their displayed posters in the Exhibit Hall. What a cornucopia of knowledge!
 
One of the unique opportunities I have had was attending a Press Conference (bright and early at 7:00 a.m.)! Each morning at AAIC members of the press community are invited to hear about a different topic related to Alzheimer’s research. This morning’s topic was the potential use of biomarkers in the nose and eyes as early predictors of cognitive impairment. Apparently, reduced ability to identify smells can be a sign of possible cognitive decline! Evidence was also presented of a strong association between thinning nerve layers in the retina of the eye and poor cognition. The implications of this research are that eventually there may be lower-cost and non-invasive tests available as alternatives to PET scans and lumbar punctures in diagnosing early dementia. You can see some of the press conference and read the press release at:

The first speaker of the Plenary Session was Dr. Tsuneya Ikezu, professor of pharmacology and neurology at Boston University School of Medicine, speaking on “Exosomes and Microglia in Tau Propagation.” The title was easy to understand compared to the lecture! I did my best to follow, but it was highly technical and beyond my General Science level of understanding. This is indicative of the amazing scientific minds here at AAIC! It is inspiring to realize how many brilliant scientists are here, all with interest in Alzheimer’s disease. It makes me truly hopeful about the future of research in our field. So much is going on in universities and laboratories around the world…who knows which discovery will lead to the next big breakthrough? And it makes me so proud that the Alzheimer’s Association brings these great thinkers together once a year for this conference.

That’s all for today. I leave for home tomorrow. I will send you one more message before I go.

With Purple Passion and Hope,
Sherry

#AAIC16


The Alzheimer’s Association International Conference®2016 (AAIC®) is the world’s largest forum for the dementia research community. Researchers, clinicians, care providers and students from over 70 countries gather at AAIC to network and discuss the latest dementia study results, theories and discoveries.

AAIC 2016 will be held in Toronto, Canada at the Metro Toronto Convention Centre and will feature more than 90 sessions, 1,700 posters and 475 presentations.

Find out more…

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