No Shame in Having Alzheimer’s

Alzheimer's overcomer Laura“There is no shame in having Alzheimer’s disease,” Laura* can confidently say after living with it for the last two and a half years.

* Her real name, used with permission.

Not being able to spell the word we or how to calculate the tip after dinner alarmed her. She told herself it had to be something else, but fear filled her.

Neither her grandmother nor her mother were formally diagnosed with Alzheimer’s, but Laura knew her symptoms mimicked theirs.

 A Formal Diagnosis of Alzheimer’s

Extensive memory testing at Sheperd Center in Atlanta resulted in a formal diagnosis of early onset Alzheimer’s disease in October of 2014.

Laura and her mother - both with Alzheimer's

Laura with her mom

“A huge fog of fear consumed me for at least two weeks. Sleepless nights filled with worry and tears. I kept thinking of my mom suffering with Alzheimer’s in a nursing home with the last seven years being pure agony and hell. She struggled so much,” Laura shared.

Laura’s internal fight to overcome appeared just weeks after her diagnosis: “After a restless night of sleep, I made a decision to not let the Alzheimer’s disease define me. I would continue living – traveling and socializing with friends – as I always had.”

Possibility of Clinical Trials

A friend encouraged her to go to a symposium on Alzheimer’s disease and dementia to learn more. While listening to the speakers, Laura remembers thinking, “This IS me.” However, the information about the progress in Alzheimer’s research and the possibility of clinical trials encouraged her.

In January of 2015, Dr. Weisman, Laura’s neurologist, started her on Aracept, which helps with her memory, and Numenda, which protects nerve endings and slows down the disease.

Via her research, Laura learned of an Alzheimer’s clinical trial at Emory University, yet she missed qualifying by one point.

Even though she was discouraged, she continued her research and found out about another clinical trial from an organization called NeuroStudies.

She made an inquiry and learned if she were to qualify for this specific study, she would have a three out of four chance of receiving the study drug.

She dared to allow herself to feel hopeful.

Biggest Curse

Hours of brutal cognitive testing, MRIs, a CAT scan, and blood tests further confirmed Laura’s diagnosis of Alzheimer’s.

“Going through the cognitive testing was tough as I had to relive all I’d already lost,” she shared.

She met NeuroStudies’ criteria and was confirmed as a good candidate to start the clinical trial medication. Laura’s clinical trial began in May of 2016.

Dr. Nash, the NeuroStudies neurologist, warned, “Your biggest curse will be your intelligence and how aware you will be as you begin experiencing losses.”

How Important Laughter Is

Disney World trip filled with laughter and great memories

I asked Laura about the losses she’s experienced, and she said, “I struggle with numbers (dates and time), spelling, writing, short term memory, getting dressed, stairs, and technology. Those are agitating and frustrating.”

She paused for a moment and continued, “BUT, my strengths are my keen ability to carry on conversations with family and friends, my long term memory, my expansive vocabulary, the ability to clean the house and do laundry, some organizational skills, and how I’ve learned to compensate for my losses.”

Throughout my interview with Laura, she stressed how important laughter is to her as she fights to overcome Alzheimer’s. Instead of getting overly upset when she has missteps, she laughs and tries again. As she shared memories of spending time with family and friends, she laughed. She’s choosing laughter over giving into Alzheimer’s.

Slowing Down the Progression

At one of her appointments, Laura shared with Dr. Nash how her short term memory was going to hell in a hand-basket. He replied, “Short term memory goes first to free up more space for long term memory.” With that in mind, Laura strengthens her memory by playing brain games (like Lumosity) and cards.

Every two to three months, she undergoes additional cognitive testing to determine if the medication is preventing the aggregation of the plaques and tangles. (English version: Is the medication slowing down the progression of the disease?)Alzheimer's overcomer with her caregiver

A Positive and Encouraging Caregiver

Her caregiver and partner, Rene, must go to her appointments and share specific details of all their activities, events, and their daily living to compare to Laura’s memory of those things. “Sometimes I do better at remembering than Rene does!” Laura shared.

Laura is blessed to have a positive and encouraging caregiver. I asked Rene to share any advice she had as Laura’s caregiver.

Rene said, “It’s important to grieve when the diagnosis is first given; then, you can begin to accept things will be different. Life will have many new normals. You also have to help the person you care for to not be defined by their diagnosis. The most important thing is to love the person for who they are.”

Achieving the Goal of Maintaining

At her last appointment in November of 2016, Laura was concerned she hadn’t performed well on her cognitive testing, which made her fear the disease was progressing.

Dr. Nash reviewed her results and said, “The typical Alzheimer’s patient loses a point (on the cognitive testing) every two months. You have only lost one point in the last six months! We are achieving the goal of maintaining.”

Laura couldn’t believe what she was hearing.

He went on to say, “If you continue only losing one point every six months, there will NOT be a marked difference in your decline for four to five years.” She left that appointment filled with hope.

With Grace and Aplomb

Laura - no shame in having Alzheimers

Laura showing her overcomer “O”

During our interview, I commented on how specific she was with details to my questions. Laura laughed and said, “I’m handling this disease with grace and aplomb.” I would certainly agree!

Laura does have bad days, so I asked her how she handled those days. “With laughter. I may experience a loss on the bad days, but I remember I also have victories. That allows me to laugh at the losses. I decide I will try again tomorrow. But most importantly, I’m stubborn in that I’m never giving up.”

Staying healthy is an important aspect of trying to slow down the progression of Alzheimer’s. Laura exercises regularly, plays brain games, socializes with friends, travels, eats healthy foods, and takes supplements.

No Shame in Having Alzheimer’s

Walk to End Alzheimer's Walk group photo

Laura (in pink hat) at Walk to End Alzheimer’s

Because there is NO shame in having Alzheimer’s, awareness and finding a cure for Alzheimer’s disease are important to Laura. She and 3,500 others in the Atlanta area participated in the Walk to End Alzheimer’s event in September of 2016. Laura’s team raised over $8,500!

Part of awareness is knowing the 10 signs of Alzheimer’s:

  • Memory loss that disrupts life
  • Challenges in planning or solving problems
  • Difficulty completing familiar tasks at home, at work, or at leisure
  • Confusion with time or place
  • Trouble understanding visual images or spatial relationships
  • New problems with words in speaking or writing
  • Misplacing items and losing the ability to misplace steps
  • Decreased or poor judgment
  • Withdrawal from work or social activities
  • Changes in mood or personality

If you are experiencing any of these Alzheimer’s warning signs, please schedule an appointment as soon as possible with your doctor. Learn more at alz.org.

Leave a reply (below): Fadetoblank.org (a website about life with Alzheimer’s) posted this quote: “There is one thing Alzheimer’s cannot take away, and that is love. Love is not a memory – it’s a feeling that resides in your heart and soul.”
In the end, isn’t everything about love?

 

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20 Responses to No Shame in Having Alzheimer’s

  • God Bless You Laura for your courage and encouragement to others. You are an overcomer!

  • Laura says:

    Thank you Maureen. I am kicking butt, doing everything I did before the disease.

  • Gini Steele says:

    Beautiful and powerful article about my dear friend, Laura. All that know her can attest to her courage, humor, determination, grace , and capacity to love. Oh, and, she’s also gorgeous. She and René are two of the kindest people I’ve had the great good fortune to know. Wonderful piece, Melony, thank you for sharing. Gini

  • Glenda Cole says:

    Everyone my age worries about getting this horrible disease. Laura is certainly approaching it in a very constructive way. I think she is looking at it very optimistically. I hope she will have many more good years before the disease progresses.

  • Donna Emig says:

    I hope everyone meets someone like Laura sometime in his or her life. She’s facing this challenge with the same tenacity and good humor as she did during her successful athletic career in high school and college. She showed a great mix of competition and sportsmanship on her many teams, and inspired her teammates.
    Kudos also to Rene: she’s a rock. I’m lucky to know both of these wonderful women!

  • Liz Garfield says:

    You are an awesome and amazing lady. Love you!

  • Angelia Ahaginaw says:

    My admiration continues to grow for you Laura, keep up the good fight and know that you are loved.

  • Rene Chapman says:

    Thank you Melony for your beautifully written article about Laura. Your words eloquently captured the true essence of Laura’s spirit and resilience.

  • Cindi Branch says:

    Laura, I have always loved you and considered you a close and dear friend. You are truly an inspiration to all of us who are privileged enough to know you and to be the recipient of your love, laughter, intelligence, wisdom, and compassion (not to mention your drop-dead, gorgeous looks). You are one of a kind, Schwag…my hero. Rene, what a hero you are, too.

    Melony Brown, once again, your words have conveyed such an accurate and riveting reflection of an overcomer’s story. You continue to amaze me with your life, faith, and ability to touch so many in such an impactful way. I think you are the written word’s best friend.

  • Julie Boyd says:

    Laura, as I read the article about your fight I was thinking about how your approach to this disease mimics your approach to sports. Whether as a coach or as a player, when the game isn’t going your way, you make adjustments. Some are very small and some are major. Alzheimer’s isn’t any sort of game, but your approach is that of a champion!

  • Diane Borders says:

    Thank you for sharing, you’ve GOT THIS!!

  • Judi Ralyea says:

    Keep on kickin’ butt Laura! You are an inspiration with your courage and grace!

  • Deb Snelling says:

    Laura my dear friend I cannot express enough of how proud I am of you. The challenges you face everyday are enough to cripple most people yet your courageous attitude and desire to live forges through. I am so grateful you have Rene. Her love and optimism combined with keeping your lives organized and moving forward is a testament to your devotion to one another. I simply love you friend and wish this would just go away. Knowing you handle it with such grace makes you even more beautiful!! I continue to pray for your healing everyday. You are loved my dear friend. I am so blessed to have you in my life!! Great article. An inspiration to many who struggle. Live, love and laugh! You do it all!!!

  • Julie Butcher says:

    Laura, you have always been an inspiration and joy to those of us lucky enough to share the love and laughter with you! So grateful and proud! Love you to the moon and back!

  • Angie Mercer says:

    I love my Aunt very much and I am so proud of her and how she is not letting this disease consume her and her life. Watching my Nana suffering from this disease was heartbreaking and now seeing what is available now is priceless. Rene, you are the best and I am so glad you are a part of our family. Love you Aunt Laurie and Rene.

  • Linda Van Arsdale says:

    My dear,dear friend I love and admire you so much. We are truly sisters and I will always be there for you thru this disease. You are one of the strongest people I know, and still have all that feistiness about you that I so love. Rene’, what a wonderful gift you are for Laura at this time.
    I love and cherish you both, my dear friends. Remember, I will always be here for the both of you
    Strong and courageous women.

  • Phoebe says:

    Wonderful article!!! Thank you Melony!
    God Bless You, Laura! I don’t know of anyone who would have handled this diagnosis with such grace, courage,
    strength and humor! You are beyond remarkable in my eyes, and every time I see you, my heart aches….but in
    a good way…..like when you used to see your Mom for the 1st time after being away at camp all summer. I love you Laurie….keep up the good work! And God Bless You, Rene’for your unconditional love and devotion ❤

  • Snooks zahn says:

    Laura, it was such a joy to share dinner with you,Rene, Carole, M’er, Jude, And Donna. It was as if we were at AHS in the 70’s. You exude confidence, strength and joy just being Schawagy! I saw no hint of the symptoms listed above. Your laughter and storytelling about your basketball skills were wonderful! I remember competing against you when I played for A M. You are so blessed to have Rene! She is a strong and positive partner in your life. You are blessed to have each other. I hope you two can make it back to Lou. In the not too distant future. Remember that laughter produces natural pain-killers in the body! I pray that you laugh long and often and are overflowing with endorphins👍 Love ya! Snooks😘

  • Vicki Morris says:

    Laura, I had no idea. You are blessed to have Rene in your life. Looks like you are Keeping your positivity and laughter strong. What courage you have to post your interview so we all can learn more about the disease. Much love to you and Rene.❤

  • Jinx says:

    You are again an overachiever! 👏🏻
    Great visit we had – you are the drug tester for the future of thousands that come after you Think about it- could be one of us writing about our love and admiration!

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Melony Brown I have had numerous opportunities to hear stories about women who have faced life's tough challenges. My writing reflects the lessons I’ve learned from these amazing women.


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