Tag Archives: Alzheimer’s

How genetic testing helped me learn about potential, serious health issue

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There is a lot of buzz these days about genetic testing. Companies like 23&Me have come under fire as critics fear the genetic data could be used by health insurance companies to deny coverage, along with other privacy rights issues.

While I understand these arguments, for me personally, the information I have learned via genetic testing has been very valuable. The following isn’t an endorsement; I’m just sharing my experience.

I did the 23&Me genetic testing years ago. It flagged conditions I already knew I was at risk for, such as Alzheimer’s disease, and what I already have, such as Celiac disease. But the most curious result was the high risk I had compared to the general population for hereditary thrombophilia, which is a predisposition to developing harmful blood clots. I didn’t know what to make of the result (which indicated I had roughly a 60% higher risk than the average person) because blood clots have never been an issue in my family and I’ve never experienced one.

Then my mother became ill, and after her surgery, developed multiple blood clots. Those clots complicated her recovery, so instead of being able to return home post-surgery, she had to spend two months in a rehab center. She required an additional surgical procedure to address her blood clot, which led to its own complications, in which she began to bleed out. She eventually recovered, after spending months on blood thinning medication, which requires strict oversight.

Recently, 23&Me updated their genetic health risk results system and unveiled a new interface in which to interpret the results. By viewing this, I saw that I carry two major genetic variants linked to blood clotting issues: Factor V and Prothrombin G20210A.

So what does this mean for my health? It means that I am aware that because of my genetic makeup, I should alert medical staff before having surgery and I should be vigilant about maintaining leg movement when traveling for long distances. Fortunately, I don’t smoke and I’m not obese, two risk factors, though risk increases as one ages. With precautions, many blood clots are preventable. The problem is, people usually don’t know they are at risk until it’s too late. Just read these stories from the National Blood Clot Alliance.

Let’s face it, my risk for blood clots is not something that would have been uncovered during an annual physical. I have no idea if my mother had the same genetic variants that I do, but I know she would have wanted to know before going through the medical setbacks that the blood clots caused her.

Have you done any form of genetic testing? If so, did you find it helpful or not?

 

 

 

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Food And Alzheimer’s: How To Maximize Nutrition And Make Mealtimes Easier — The Diary of An Alzheimer’s Caregiver

Good tips here! While my dad retained a remarkable appetite when he was in the memory care center, when he landed in the hospital, his appetite dissipated. Caregivers should be prepared to “bend the rules” and let dessert be eaten first, etc. In the end, it doesn’t matter about the order of consumption, as long as your loved one is happy and eating.

Sign up to get these posts and a whole lot more delivered right to your inbox! The Diary of An Alzheimer’s Caregiver – Appreciate the good, laugh at the crazy, and deal with the rest! 97 more words

via Food And Alzheimer’s: How To Maximize Nutrition And Make Mealtimes Easier — The Diary of An Alzheimer’s Caregiver

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August 21, 2018 · 8:35 pm

A son’s moving musical tribute to his mother with Alzheimer’s goes viral

If you’ve spent time on social media over the past month, you may have seen a video of a touching performance by a young country musician from Iowa named Jay Allen. While Allen may not have been a household name before, he certainly is now.

Allen now lives in Nashville but on July 28, he was performing at Dubuque County Fair in his home state. He had a special guest, his mother, who has early-onset Alzheimer’s. Sherry Rich was diagnosed at just 53 years old, and it has been devastating for the entire family. It prompted Allen to write a song, “Blank Stares.” It includes such moving lines as, “If I could only seal the cracks you’re slipping through,” and “Deep down somewhere I swear I still see you/Between the blank stares.”

Allen performed “Blank Stares” at the fair with his mother by his side. A fan captured the touching moment on video, and it was posted on Facebook, where it quickly went viral. The video has been viewed over a million times.

While heartbreaking, it’s wonderful to have young people like Jay Allen raising awareness about this terrible disease. I so appreciate him talking about the financial hardship that Alzheimer’s can cause, because that’s a topic that is not discussed enough. He has touched many people, and proceeds from “Blank Stares” are raising money for Abe’s Garden, a memory care center in Nashville.

If you’ve seen the video or heard the song, I’d love to hear your thoughts.

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Alzheimer’s and agitation: How caregivers can cope

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Photo by Gabriella Fabbri/Freeimages

Among the most disturbing and difficult behaviors for caregivers of those with Alzheimer’s to manage is agitation and aggression. Unfortunately, agitation and aggression are quite common symptoms, with almost half of those with Alzheimer’s exhibiting such behaviors, according to a 2008 study.

infographic-4_editedI witnessed the effects my father’s aggressive behavior had on my mother. Even though my dad was slim, when agitated he proved to be far more than my mother could handle. He still could pack a punch, literally, as when he hauled off and hit my mother in the chin with his fist. He claimed he was shadow boxing and she got in the way.

My father was eventually placed in a memory care center, in part due to his aggressive behavior.

Over the years, I’ve learned tips on how to best manage Alzheimer’s agitation and aggression. The key is that not every solution works for every patient; each case is unique. Here are some suggestions I found helpful:

  • Determine if agitation follows a pattern: For some people with Alzheimer’s, they become more agitated at dusk (sundowning) or during specific tasks, like getting a bath or taking medication. (For my dad, it was the bedtime routine.) Consider that the task may be frustrating to complete for the person with Alzheimer’s. If a certain event is a known trigger, it can be helpful in reducing agitation. Distract with an activity to reduce the effects of sundowning. Have an aide help with bathing. Try to disguise medication in food or a smoothie if possible.
  • Create a calm environment: Those with dementia tend to do best in calm environments that reduce the risk of overstimulation. Noise in particular can be overwhelming. Try soothing, familiar music and lights that are bright enough to maintain safety in the home but that don’t create a harsh glare. Limit caffeine if that is determined to increase agitation. Natural remedies, such as soothing teas and herbs may be helpful, but always check with a doctor first.
  • Stay active: For those with Alzheimer’s who are ambulatory, exercise can help reduce aggression and agitation. My dad loved to take long walks, and as his dementia progressed, he spent more time indoors, which was a source of frustration for him and increased his agitation. For those who have difficulty walking, doing simple household tasks like folding towels can be useful in preventing boredom, as can activities like simple jigsaw puzzles and coloring books.
  • Medication: While medication is not effective for some patients, it can be a useful tool when combined with the above suggestions. Consult your loved one’s physician to learn about options. Consider enrolling your loved one in a drug trial if they qualify.

One important factor to keep in mind is that agitation that appears suddenly may be related to a physical ailment your loved one is experiencing but cannot communicate their discomfort. For example, urinary tract infections are common in those with dementia, and can create very uncomfortable symptoms, which can increase agitation. A new medication can also increase aggression. Share any concerns with your loved one’s doctor.

What methods have you found to curb aggression and agitation in those with Alzheimer’s disease?

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Bittersweet birthday memories

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For me, July will forever be associated with birthdays. My mother’s birthday was July 6 and my birthday is July 19.

While birthdays should be filled with happy memories, ever since the death of my parents, I’m left with bittersweet memories. There’s a profound quote in the Netflix documentary, End Game, which is about end-of-life care and hospice, that touches upon what I’m feeling this week.

“Suffering is the wedge, the gap between the world you want and the world you got.”

Even though I didn’t spend my birthday with my parents as an adult, they always sang Happy Birthday to me over the phone. It was a fun tradition, and each year Mom would tell me how they practiced all week to make it special. My parents both had some musical talent, with Dad especially fond of singing in the style of his favorite crooner, Bing Crosby.

The year before my father was placed in the memory care center, my parents performed the best rendition ever of Happy Birthday. My dad was in high spirits that day, and even though he was in the middle stages of Alzheimer’s by then, he hadn’t lost his ability to sing or to ham it up. He continued singing, performing a medley of classic show tunes before Mom was able to get the phone back from him. At the time I thought, “I wish I had recorded this!”

As my birthday approached the next year, I was visiting my parents and Mom and I made the trek to the memory care center to see Dad. He was mobile but heavily medicated. I didn’t expect any birthday singing, but Mom insisted. I was torn about recording it, but I knew in my heart that it would be my last birthday with my father alive. Little did I know then that my mother would be in a care center a year later recovering from cancer surgery.

Even though I knew it would be painful, I decided to record it. I’m glad I did, even though it is heartbreaking to watch. (I rarely share this video, but am making an exception here.)

As to the quote about suffering, what I wanted was the sublime Happy Birthday performance from the year before. What I got was my father, addled with medication and his brain ravaged by Alzheimer’s, trying his best to perform one final time, with my mother trying desperately to be upbeat.

Ultimately, both memories are gifts. They are both filled with love.

 

 

 

 

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AlzAuthors marks 3rd anniversary with book sale and giveaway

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AlzAuthors June book sale.

I’m so excited to announce this book sale and giveaway. The AlzAuthors group is marking its third anniversary! I’m honored to be a part of this group of authors who have written books about Alzheimer’s and dementia.

In addition, June is Alzheimer’s and Brain Awareness month, so it’s a good time to read more on these important topics.

Check out the link below to learn more about the book sale and how you can register to win a collection of books from AlzAuthors, including The Reluctant Caregiver.

via Happy Anniversary AlzAuthors! Alzheimer’s & Brain Awareness Month Book Sale & Giveaway

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The cruel progression of Alzheimer’s

While the progression of Alzheimer’s is different for each person, there is a progression, and it’s a heartbreaking one.

On Sunday, 60 Minutes aired its latest installment following the life of Carol Daly and her journey with Alzheimer’s. This year marks 10 years since the show first made contact with Carol and her husband Mike, a former NYPD officer.

It’s gut-wrenching to watch the mental and physical decline of Carol over the years, and how much Mike suffers as a caregiver. But Carol’s story is  important to tell, to help raise awareness of this devastating disease to a mass audience. I am grateful for Mike and Carol for allowing cameras to document the cruelest aspects of Alzheimer’s.

Watch the full 60 Minutes segment

The segment touches upon important topics, such as the high cost of Alzheimer’s caregiving and the lack of financial support, along with the physical and emotional toll dementia caregivers takes on loved ones. You know Alzheimer’s is a beast when the former cop tells the CBS correspondent that caregiving is the toughest job he’s ever had.

The sad truth of course is that there are many Mikes and Carols out there, fighting their own battles with dementia. And that’s why we must do better, as a government and as a society, to help families caring for a loved one with dementia.

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