Is the media misleading the public on Alzheimer’s?

The Memories Project

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…

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An Open Letter to Whoopi Goldberg….We most certainly WERE Listening

As someone with Early Onset Alzheimer’s; having nieces and more than several friends who are nurses, I applaud your professionalism as well as the size of your heart, which is bigger than you know!

Rebecca's Ramblings

Since I saw The View’s so-called “apology” clip on social media, I’ve given this post a tremendous amount of thought. My first instinct and knee-jerk reaction was to sit down with my laptop and blast them with full force…unload my anger  and outrage onto the page…err…computer screen…so I could purge it and get all of that negativity out of my system. I’ll admit, I even got about a quarter of the way through that piece, when I stopped to re-read it. It was a scathing, searing diatribe that quite frankly, made me ashamed of myself. It sounded like something that the View Crew would say…it was petty, spiteful, angry and distasteful. That’s not who I am as a person, a writer or more specifically, a nurse. Quite frequently, I end my blog posts with a sentence urging my readers to be kind to each other. I am a tireless advocate for tolerance, peaceful coexistence and doing…

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Saved by Siri

Since I am no longer able to work, my main focus is making my family comfortable. In between scouring the Alzheimer’s sites for information to post on Twitter, Facebook and/or to update my Advocacy speech, I do laundry, I clean, I unload and reload the dishwasher, it’s what my life has come to be. For all practical purposes, I am “Mr. Mom” and I’m OK with that. It’s not what I imagined retirement to be, but there are things that happen in which we have no control. This is one of those things,

Another thing I try to do is provide evening dinner for Shannon, Asheton, and Bradley. I used to love to cook. I could throw things together and make them taste so good. As long as I didn’t make it too hot (spicy), they would eat it all and eat all the leftovers. The leftovers were the key. It’s how I gauged whether or not they liked what I made. If it stayed in the refrigerator longer than 2 days, they didn’t like it. Jambalaya

As my Alzheimer’s shows signs of progression, I find that leftovers stay in the refrigerator a bit longer than usual. Every now and then I have to throw them away. Hell, even I don’t like what I make sometimes. To play it safe, I now use online recipe’s or recipe’s from the side of the box to make sure all the ingredients are there. I still add a pinch of this or that, and make sure the meal is nutritionally balanced, but I mainly stick to what the recipe calls for.

Now, don’t worry, this is not a food blog. I am just trying to set the stage for what today’s entry is really about.

Shannon works very hard to keep all things together. When she comes home at the end of the day, she is physically and mentally exhausted. I try to make sure everything is done so she can just relax.

Every Wednesday, there’s a place near our house that runs a special on their “BANG-BANG SHRIMP,” $6 for the order along with bread and a small bed of lettuce.  Although the shrimp have a bit of a kick, Shannon loves them. Since Wednesday was the 1st, and the 1st of the month is her busiest time, I decided to surprise her with dinner.

I called ahead, ordered the shrimp and left to go on my 6 mile, 14-minute round trip to get the food.

That’s where it went all wrong.

3 miles there, 3 miles back. I felt comfortable enough to drive that route by myself. After all, I was going to do something nice for my wife. So off I went.
About 10 minutes into the drive, I realized I was nowhere near my destination. Nothing looked familiar. As Yogi Berra would say, “It was Deja Vu all over again!” 

Since I have used “My Alzheimer’s Story” so many times recently, I immediately went to the part when I got lost going to my Dr.’s office. I had this. I pulled off to the side of the road and started putting info into my phone. The only thing wrong was, I couldn’t remember the name of the place I was going, I couldn’t remember what the Google Maps app looked like, I couldn’t remember a damn thing. The only thing I could remember was, “CALL SHANNON!” “CALL SHANNON!” However, stubbornness, pride, embarrassment and the fact that she had a horrific day prevented me from calling.

So I just sat. I hope no one reading this EVER has to face the feeling of not just being lost, but not knowing how you got there or how to get back.

siriBack to me sitting in the car in a complete blank state of mind. I don’t how long I was there. I again went to my phone to try and look for the Google Maps app. I pushed the main button on the phone and I guess I held it for too long. I heard a sound and the words, “What Can I Help You With” appeared on the screen. It was my friend Siri.

Embarrassingly I started to cry, uncontrollably, you know the point in a movie where someone is stranded on a small, uninhabited island in the middle of the ocean and they see a ship headed their way to save them? THAT kind of uncontrollable crying!

Although I couldn’t remember the name of the restaurant, I could remember Bang Bang Shrimp. So I asked Siri where to find Bang-Bang Shrimp. Bonefish Grill came up with directions.

SIRI SAVED ME!!!

I went to the restaurant, got the food and drove back home, with GPS directions of course. Pulling into the driveway, I realized what should have been a 15-minute trip had turned into almost 45 minutes. Going inside and seeing what my little journey had to done to Shannon was worse than anything.

She was angry with me that I didn’t call, and rightfully so. I explained that being she had a rough day, I didn’t want to bother her. She explained that if I had called her, this could have been resolved in less time and a lot less stress. She was right of course. My good intentions had bad results.

I realized at that point that my days of driving may be nearing the end. I remember when both my parents had to give up their keys. It wasn’t pretty. My Dad, although he couldn’t remember too much, held a grudge against my oldest brother for taking his keys.  I don’t want to put Shannon in that position. She has enough to deal with, dealing with me on a daily basis with just day-to-day activities.

What I’ve learned through all of this and what I hope to remember is, having Alzheimer’s means you have to lean on others for help. I have the 3 people I love the most on which to lean . . . Shannon, Asheton, and Bradley. I have my sister and brothers and I can’t forget my furry, faithful, stuck-to-my-side companion…Dallas. I have friends and family from coast to coast and all points in between that offer their support daily. I consider myself lucky and loved and I say that with tearful pride.

Thank you Siri, and Apple. Making an app to be used as a personal assistant, in my opinion, was the best thing you’ve apple_logo_dec07
ever done. I sincerely hope people like me will use this feature instead of just asking:
What is 0 divided by 0?

Until Next Time,
Brian

“I Have Alzheimer’s . . . Alzheimer’s Doesn’t Have Me!”

Thank Goodness My Long Term Memory is Still Intact

Thank Goodness My Long Term Memory is Still Intact

This past weekend, I attended a reunion of sorts. We celebrated 75 years of educational achievements St. Agnes Parochial School accomplished. Thousands of boys and girls passed through the doors of St.Agnes, boys in their tan khaki shirts and pants, girls in white blouses and navy blue skirts. (the uniform code was changed later on, but that was long after I left) Unfortunately, due to low enrollment over the past several years, the decision was made to close the school.
Like anything else that happens in New Orleans, whether good, bad, happy or sad . . . IT WAS PARTY TIME! Thus, The Final Bell Has Rung Celebration was created. I’ll get to the celebration in just a bit.

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I must admit, when I first read about the closing of the school, it saddened me. So many memories came rushing into my head; teachers, classmates, activities, school plays, field trips, etc. I had my own personal movie playing in my head. I also visualized the layout of the school. (Spending 8 years in the same building, you get to know your way around) I could see the cafeteria and remember the smells of the lunches Mrs. Jeansonne prepared for us each day. I think we were all too young to appreciate how good her food was. How I would love to taste her chicken and rice again.
(Friday nights, all 3 of my brothers, at one time or another, as well as myself, attended Boy Scout meetings in the cafeteria. Although smaller in numbers, Troop 36 is still in existence today.)

It amazed me how much I remembered and how clearly the memories were. Most of the time, I have trouble recalling 11219047_10205504736072068_5639772073333305210_nevents from the day before or even 5 minutes ago, however, Alzheimer’s, if there is such a good thing about this damned disease, still allows me to recall memories of long ago.

One of my fondest memories was due to the huge enrollment in the 60’s (we were the Baby Boom Generation). The school ran out of classrooms. So, my 1st Grade class (1966) was in an old house behind the school. The next year the portable buildings were completed and they housed Grades 1-4. The main building was for the upper grades.

Moving into the main building for the 5th grade took a little getting used to. The hallways of the second and third floors always seemed so dark, long and daunting. I guess anything would look like that at such an early age. Now, still a bit dark, everything looks so small.

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Flash forward to the present and the “not-so-clear-memories.”  If not for the photos that my wife took, as well as others, at The Final Bell Has Rung Celebration, I would not have remembered who I ran into. Those who I did manage to see, although I hadn’t seen some of them in 45 years, I still recognized them. They still had the same faces, just a little bit older, sometimes grayer (like me), but I knew exactly who they were.

Some of them knew I had Alzheimer’s and were amazed how well I looked and that I remembered them. I’m not sure what they expected, but it goes along with the stigma of having Alzheimer’s. You’re supposed to be elderly and sickly looking. Don’t get me wrong, I’m not complaining or insulting anyone. I’m probably the first young(ish) person they have seen with Alzheimer’s. I totally understand and appreciate every one of them. I also ignore the stigma. Like Popeye says, “I yam what I yam!” and as I always say, “I’m Still Me!”

My wife, Shannon, stated in one of the pics she took, “Brian having a great time at the St. Agnes reception. He has seen and talked to so many old friends….he is so happy and in his element….this is ‘my Brian'”

It made me realize that she saw me as I “used to be” and it made me happy that she could see that. On the other hand, it saddens me that I am not that person all the time anymore. I want to be, and sometimes I am, but I want to be that person all the time, if not for any other reason than for her. She married a man who was funny, lively and outgoing and I still am at times, but I’m not as spontaneous as I used to be. It makes me extremely anxious and that pisses me off.

Anyways . . . as I said before, if it weren’t for the pics, I would have a hard time remembering a lot of what happened and 10416617_10205504735472053_8447422720410854227_nwho I ran into. I can be reminded of something if someone prompts me or brings up a certain situation but unfortunately, I’m not able to remember those things on my own.

As long as my long term memory stays intact, I can recall many memories, have many movies play in my head and still recall those dear friends from 40+ years ago. I just can’t remember the present too well. And that my friends is the beginning of a long, horrible road that I know I will travel, but I will travel that road with all my memories of yesteryear and those memories will include those of you whom I have had the pleasure of making your acquaintance.

Until next time,

PEACE
B