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.

  26 Responses to “New Meaning to The Longest Day”

  1. Way to go, Lynn! Thanks for leading the way!

  2. Way to go!!! I wish I was walking with ya!

  3. wow – reminds me of my mom who also had early onset – I miss her as much today as when she finally succombed in 1991 and am hoping to make the 5k walk in her memory here in philly in september. THANK YOU for the inspiration!

  4. Bravo!

  5. Keep pressing Lynn and all others who are affected in any way by this terrible disease.

  6. You go girl! Very proud of you. Both of my parents have it. My father just passed away in February after being diagnosed approximately 1996. My Mom is in an ALF and is now loosing her ability to communicate. It is a long journey. Keep up the good work!

  7. Thank you for your hard work, Lynn. Marilyn's story has hit a nerve… my 57-yr-old boyfriend also has early-onset Alzheimer's and just recently gave up his car keys too. We have so many more
    adjustments ahead of us…

  8. Marilyn inspires me and so do you. Libby Connally

  9. way to go!! my mom has the early stages of alzheimers and its so sad to see this…

  10. Thank you! I am with you in this fight!

  11. Marilyn is my mom. Thanks Lynn for doing this. I really appreciate people like you and my mom doing what they can to get the message out about Alzheimer's.

    • Angela, it is truly an honor. She and your family are an inspiration to all of us. This was a great experience.

    • Hi Angela
      I just found out about your Mom a couple of days ago through a mutual friend, Doug. Your Mom and I lost touch a few years ago. I have thought of her often and I am so sorry about her diagnosis. She always said how strong and smart you are and I hope that helps you through this tough and trying time. Please remember me to her.
      Sincerely
      Libby Fairchild

  12. Lynn, thank you.

  13. Thank you Lynn! My 52 year old sister is in the severe stage of early onset Alzheimers, and I therefore appreciate all that you do for the struggle to fight this terrible disease. When my sister lost her job with a large Corp after 18 years, and then her driving ability, she lost all freedom and dignity. Although I have "lost" my only sister as I knew her as for 40 years, I am grateful for each day she is still in my life.

  14. My Grandmother had this terrible disease and passed away in 1996. Now one of her daughters is fighting the fight and every day I worry that it will be passed along to my Mom. Thank you for the wonderful article as I remember when my Grandma had to give her keys and car to my aunt. Let's pray that someday this will finally end.

  15. Thanks Lynn keep it up we just did the inlet ny walk last saturday . Mom passed in 09 and so did my aunt of alzheimers I'm just now starting to get involved keep up the good work

  16. I'm with you all the way. I help care for my mom with the last stages of Dementia and just put my Dad in a Nursing Home with Alzheimer's a week ago. My heart is broken so bad. We need to find a cure of this Monster Disease !!! I want tot walk for the cause when I'm able.Go Lynn…..

  17. Way to go Lynn. My dad was diagnosed with Early Onset at 52 and is now in the final stages. So promising to hear how active she has been in the cause and what a special person she must be for you to support her. It is such a struggle for families and for the person with this awful disease. Thank you for your support

  18. Thanks for sharing the story about your friend Marilyn and thanks for volunteering and helping a great cause.

  19. My father also suffered from early- onset Alzheimers, diagnosed at age 52 . He succumbed to the disease 10 years later. The most difficult thing for me was to listen to my Dad talk about the things he knew he used to be able to do. He knew he forgot and knew what was to come and he was frightened. In the early stages, he and my Mom were very active in the Alzheimers Association and travelled to Washington and lobbied for increased research funding. I miss my Dad and think of him often. I hope a cure can be found in the near future. The toll this disease takes on a family is devastating. Thank you to all those fighting for a cure!

  20. What a wonderful effort. The Alzheimer's Assn Longest Day is an inspiration to all. Thank you.

  21. What a fine tribute Lynn. I chair our Pa. Coalition & the SEPA Advocacy Committee for the Del. Valley Chapter & am privledged to know Marilyn. She's an integral member of our Committee —we also share the same member of Congress. Bringing her compelling story to D.C. last year was a major factor in Rep. Schwartz & Senator Casey's office throwing their support behind NAPA. Her comments at the NAPA input session held the day before before our Hill visits this year were equally powerful.
    Thank you !

  22. What a fine tribute Lynn. I chair our Pa. Coalition & the SEPA Advocacy Committee for the Del. Valley Chapter & am privledged to know Marilyn. She's an integral member of our Committee —we also share the same member of Congress. Bringing her compelling story to D.C. last year was a major factor in Rep. Schwartz & Senator Casey's office throwing their support behind NAPA. Her comments at the NAPA input session held the day before before our Hill visits this year were equally powerful.

  23. way 2 go girl my passed mom passed away 4 mos ago of alz it is a terrible disease i hope they can find a cure someday

  24. My father has this disease at 84 and a nurse where he is living said it is the longest goodbye disease and that it is. At times he knows me and at other times he says you are not my daughter, that is sad. But I know and I can't deny as I look like him. He told my sister yesterday at a visit, there is something wrong wtih my mind and he pointed to his head, and they are giving me medicine for it. I cried all last night thinking about that statement.
    But he still can read and they use him for a program reading to the very residents that he lives with.
    Bless their hearts and for all those that will walk, run and bike for this disease. I would but am unable to as I have multiple illnesses myself. Thank you.

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