Tag Archives: Alzheimer’s

Legendary coach Pat Summitt gone too soon

Even if you are not a women’s college basketball fan, you probably would have recognized the former Tennessee Vols coach and her intense sideline expressions. Pat Summitt, the winningest coach in collegiate sport history, has died from Alzheimer’s complications at the age of 64.

Though early-onset dementia is usually more aggressive, I am still surprised at how quickly the disease claimed Summitt.

Word of her declining health spread on social media over the weekend. After being diagnosed with early-onset Alzheimer’s in 2011, Summitt retired from coaching in 2012 but was an active and passionate  Alzheimer’s activist. Over the last year or so, she had made less public appearances, but I had no idea her health had declined so significantly.

Again, even if you don’t care about sports statistics, Summitt’s record was absolutely amazing. Summitt amassed the most successful coaching career in collegiate history with her head coaching record of 1,098 wins and 208 losses, earning her an impressive .841 win percentage. That’s best college coaching record, male or female.

Known for her fierce competitive streak and steely-eyed intensity, players remembered Summitt as a tough but gifted coach who encouraged them to give their all in each game.

In response to her Alzheimer’s diagnosis, Summitt said, “There’s not going to be any pity party and I’ll make sure of that.” After the end of her coaching career, Summitt worked tirelessly to raise awareness for Alzheimer’s by establishing The Pat Summitt Foundation.The Pat Summitt Alzheimer’s Clinic at the University of Tennessee Medical Center is scheduled to open in December.

Summitt’s passion and dedication will be missed on and off the court. I hope her death at such a young age will at least make people take note that Alzheimer’s is not just an “old person’s” disease, and that it can claim the lives of even the toughest fighters among us. (Though one could argue that death is victory over Alzheimer’s.)

May she rest in peace, and my thoughts are with her son Tyler and the family.

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Gratitude on Father’s Day

 

It was an emotionally exhausting week to be a journalist, with the mass shooting in Orlando yet another example of America at its worst. But as always is the case in these national tragedies, stories emerge that show America at its best: brave, compassionate, able to put aside differences to help others in need.

A father in Seattle talking to his 8-year-old daughter about the Orlandodad-joy-sm incident was surprised when she innocently asked, “Do the fathers still get a Father’s Day card?”

That spurred a project where 49 Father’s Day cards were created for each father of a victim in the Orlando shooting. The city got involved and over 300 people signed the cards.

It’s a difficult Father’s Day for too many families struck by senseless tragedies.

It’s a heartbreaking Father’s Day for those who have recently lost their fathers.

It’s a bittersweet Father’s Day for those with fathers who have Alzheimer’s disease.

But somehow, somewhere, we have to dig deep and be grateful for what we do have. So I am grateful for a father who has been freed from the prison of Alzheimer’s, who loved me and was proud of me and for all of the old photos and mementos I have of his life that I will treasure forever.

If you celebrate Father’s Day, I hope you are marking the day in a way that is meaningful for you.

 

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Thanking Jim Garner and family

I have been following Jim Garner’s inspiring, heartbreaking, well-documented journey with early-onset Alzheimer’s.

He died in April, five years after his initial diagnosis. His mother and brother also died from the disease.

Garner was only 53 years old, and leaves behind a wife and two children. The family showed remarkable strength, grace and selflessness in allowing the Daily Press to document how Alzheimer’s impacted them over the last several years.

In a struggle for aid, Garner, a veteran, was denied access to government programs, including Medicaid, Medicare and social services. Despite 23 years in the Air Force, he Veterans Administration only offered Garner  a 30-day respite stay in a one-star facility.

A friend of Jim’s wife set up a GoFundMe campaign with her reluctant approval. Karen, Jim’s wife, was overwhelmed by the outpouring of support and donations. The money raised allowed Jim to be placed in a secure memory-care unit for the remainder of his life.

Don’t underestimate the power of a caring community.

Karen wants to dedicate the rest of her life to raising awareness for Alzheimer’s, but knows that she will have to get a job to support her two children. Just by allowing her family’s struggles and triumphs to be documented, she has done so much to personalize the toll that this disease takes on the entire family.

One quote from the interview with Karen really struck me. She was talking about how Jim always was about not sweating the small stuff and taught her to appreciate the seemingly mundane things in life. “We don’t realize how lucky we are that we can empty the dishwasher until we can no longer do it, “she said.

So true.

Wishing the Garners love, peace and healing as they mourn their loss.

 

 

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Dad’s infamous cat rant

In honor of what would’ve been my father’s 84th birthday, I’m publishing the infamous “cat rant” that prompted a viral response back when we argued with each other in newsprint, not online.

I had been searching online for the letter for years, but as I was putting together a scrapbook for my dad, I came across dozens of letters to the editor clippings. The cat letter, along with the responses it generated, was in the pile. I was ecstatic.

dad cat letter

The funniest thing is that I thought the letter my dad wrote was much longer and talked about how the stray cats would hang on the back fence of our patio and intimidate people taking out the garbage or going to the laundry room. Maybe Dad’s original letter was longer, and was edited for space. But reading it now, and admittedly a huge cat lover myself, it doesn’t sound as bad as I remembered.

You can zoom in with your browser if you want to read the details. Basically Dad says he doesn’t like cats, that they don’t do anything good for anyone, and that cats are lazy, sensitive and jealous. He also laments being late to work because of a cat curled up under his car. He finishes the rant by saying that cats are an abomination. “I just can’t stand the little devils.”

But the responses are great! Who knew there were so many crazy cat ladies (and I use that term endearingly as I am one) in the Los Angeles area in the 1980s? And the fact that it prompted one of the newspaper’s columnists to write his own editorial response is fantastic. His criticism that readers get more outraged over someone who doesn’t like cats but ignore the wars taking place around the world still applies today.

cat letter response_edited

 

The image of the mother cat and her kitten is included to show how my dad’s opinion on cats changed over the years. When he was working as a security guard at a trucking company, he met a stray cat that everyone called Bonita. The cat may not have been the most beautiful, but she touched my dad’s heart. When she became pregnant Dad made sure she had enough food to eat. Even after he no longer worked there, he’d stop by and leave her some canned food for her and the babies.

As Dad’s Alzheimer’s progressed, he would ask me how my cat “Missouri” was doing. (My cat’s name was Michigan.) So in the end, Dad turned out to like the “little devils” quite a bit.

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Medical studies are important, but results may be deceiving

As caregivers, we are always interested in reading the latest and greatest study on whatever condition our loved one is afflicted with. For me, I read a lot about Alzheimer’s and other dementia forms, as well as colon cancer, because those are the two conditions that claimed my parents’ lives.

Since I also work as a journalist, I know all too well how the latest studies become alarming headline fodder to generate page views. Recently, I wrote how a new study was completely misrepresented by certain media outlets, which ran with the headline, “Is Alzheimer’s contagious?” or some variation of that theme.

bacon

The scare study of the week is about processed meats and increased cancer risk. “Bacon is as bad for you as cigarettes” was a typical headline I saw today. But a deeper dive finds that the World Health Organization doesn’t actually rank what they determine to be carcinogens, so while cigarettes, processed meats, and asbestos may all be defined as known carcinogens, the risk of disease and death likely varies.

WHO does track death statistics and those would indicate that smoking still claims more lives than those eating hot dogs. So is eating hot dogs probably bad for you? Yes, if you indulge on a daily or regular basis. And while yet another recent study indicates that food can be addictive (pizza being the most addictive), cigarette smokers are likely to smoke many more cigarettes than people will eat slices of pizza or scarf down hot dogs on a daily basis. The more you are exposed to a carcinogen, the higher your risk of cancer, studies would suggest.

Another interesting twist on parsing these studies comes from the New York Times, which analyzes a study about how honey is no better for health than sugar. Despite the tantalizing headlines, the study group was alarmingly small and the study was very short-lived, making the results less reliable.

My mom disliked processed meats and red meat. She ate little meat, and was mainly a vegetarian. She didn’t smoke. Yet she ended up with colon cancer, which is the main cancer associated with these processed meat studies. So diet is no doubt important, but it isn’t everything. Sometimes, disease strikes at random.

You don’t have to be a health nut to know that bacon and hot dogs are not the healthiest nutrition choices. Enjoy in moderation, and instead of reading and worrying over the latest health study, get out and exercise or enjoy your favorite hobby.

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Signs you cannot ignore

On Saturday, I went to pick up my writing award. It was a nice presentation. Each of the awards is named after a famous author, and the contest organizers revealed what each author said about the winning entries. Rick Bragg said about my essay, “Strong, really strong. Made me choke up.”

Hopefully that validation will help motivate me to finish the book that I’ve been working on over the last few years.

Joy writing award

Just before I left for the ceremony, Mom’s burial flag arrived in the mail. (Even though we had her cremated, she was entitled to a flag for her Navy service and I thought it would be nice to have in a memorial display for her.) I had to take that as a sign that she was watching the day’s events, ever the proud Mom.

And if Mom was watching from the other side, so was Dad, as she wouldn’t have given him a choice! It is a bit odd to celebrate a piece about my dad’s battle with Alzheimer’s, but I know Dad would have been proud of my award too, as he secretly wanted to be a writer, and loved to read. I think he would have forgiven me for making him the subject matter.

Monday marked the four-month anniversary of my mother’s death. While life has moved on and I with it, I still find myself hitting those potholes filled with “I should have done this” or I could have done xyz better” thoughts when it comes to my mom’s care.

I know the road will smooth out eventually. In the meantime, I’ll keep looking for signs and keep moving forward.

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Is the media misleading the public on Alzheimer’s?

It seems to be a mixed blessing that the media is paying more attention to Alzheimer’s.

On the one hand, the spotlight on a disease that has long been kept in the shadows is welcomed. But modern journalism’s need for clicks sometimes leads to misleading headlines, which only hurts the awareness movement.

Brain

Recently, a study came out which demonstrated in a very small sample of autopsies of 8 people who had been diagnosed with the rare brain disease, Creutzfeldt-Jakob disease related to growth-hormone treatment, 6 of the 8 showed an increase in amyloid plaque that scientists believe is linked to Alzheimer’s.

It is certainly an interesting study, and the results were unexpected, but there are not any solid takeaways until larger studies can be performed. Yet, in the click-crazy world of online journalism, some outlets ran with the headline, “Is Alzheimer’s contagious?”

I’ve read accounts from those with Alzheimer’s who criticize the use of the term “Alzheimer’s sufferer” because they are doing their best to live successfully with Alzheimer’s and sufferer sounds like there is no hope with anyone with the disease.

I might be guilty of using the term “suffering” when describing my Dad’s experience with Alzheimer’s, but that’s because I truly believe he was suffering. I don’t think it should be used as a blanket term, especially for those in the early stages of the disease.

As a journalist, I try to be aware of these considerations, but I encourage everyone to politely correct those who provide misinformation on Alzheimer’s or any other disease.

The old expression of “all publicity is good publicity” may be true for Alzheimer’s, but it is the responsibility of advocates to make sure the coverage is accurate.

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