No Shame in Having Alzheimer’s
“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.
“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.
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
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?)
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
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
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?