Tag: Alzheimer’s disease

An Alzheimer’s Poem

Tomorrow I may not recall,
The things I should have said today.
I can’t help it, it’s just how it is,
So I don’t hold back saying what I want to say.

I may not always remember your name,
But somewhere inside, there’s a memory.
With a little coaxing it comes to the forefront,
Slowly appearing, again becoming a reality.

I hate that I don’t appear to be who I once was,
But inside, I’m still me.
My reality may be a little skewed and bent,
My speech a little stuttered, not flowing and free.

These are just minor setbacks,
So I don’t need nor want your sympathy.
Yes, I’ll get worse over time,
But don’t worry, Alzheimer’s isn’t contagious, you can catch it from me.

Just remember, life is short and unpredictable,
You never know what tomorrow may bring,
So express the love you hold in your heart,
Belt out that song you so badly want to sing.

Brian – 4/26/15

Eat THESE! Take THAT! Look at THIS . . . Fact or Fiction?

As an Alzheimer’s Advocate, I’m always searching the news feeds for anything new in the Alzheimer’s world. Some of things I find are really interesting and what I believe to be helpful.

The latest being a new app called, Life in the Moment. “The full concept will launch in late spring. She hopes it will not only help families manage the disease but help monitor its progression. Life in the Moment will have “a variety of really practical daily life activity support tools, she said, “so that families just have one place to go.”
They even have the support of Glen Campbell’s family behind this app and will feature his song, “I’m Not Gonna Miss You.” It seems to be a very good piece of technology and will hopefully do what it says it will do.

Life in the Moment

There is also an app that states:

App That Helps Patients Sing Their Favorite Songs Slows Dementia, Alzheimer’s Disease, Improves Memory

This advertisement features an image of Gene Kelly from “Singing in the Rain” to help promote the app.

singingintherain01

While I understand the idea behind this app, and it is “FREE” to download, instead of choosing the songs they have on their app, there are tons of places to download free songs on your phone or tablet that can be tailored to your loved one’s tastes.
One of my brothers made a CD for my Mother (who recently passed away on January 14, 2015 from Alzheimer’s)  and played it for her when he visited. My Mother loved music and had a beautiful singing voice. Our childhood was filled with music, especially the “Sound of Music” soundtrack, which my mother would sing along with Julie Andrews.
Anyway, she seemed to respond favorably to the music.
Since I have Early Onset Alzheimer’s, I also find listening to music extremely comforting, as well as emotional. To me, it is a healing tool.

But like I said, the app is free so, it may not be so bad.

So that’s 2 of the good things I have found on the Interweb. I’m sure there are more, but those were the most recent I came across so I used them as examples.
Now onto the other things.

Let’s start with Coconut Oil.
can-coconut-oil-prevent-alzheimers

As the caption on the picture says, “Can Coconut Oil Prevent Alzheimer’s?”
Well, let’s face it, if Coconut Oil could prevent Alzheimer’s, every Neurologist in the world would be prescribing it. Drug companies would be making their version of it and the future would be Alzheimer’s free.
Don’t get me wrong, Coconut Oil does have some great health benefits. My sister and brother-in-law take it religiously and it has helped them in a nutritional way, but, they don’t have Alzheimer’s. Coconut Oil has slightly improved brain function in people with Alzheimer’s, but only for a short period of time. I call it the band aid effect when it comes to Alzheimer’s.
I spoke with my Neurologist about Coconut Oil and he said the jury was still out and there was no concrete proof of its curability capability.

Then I came across this:

Turmeric: ‘Remarkable Improvements’ For Alzheimer’s Disease

NM 2754 L300 Turmeric_150x280

The first thing I read was, “A turmeric treatment on patients with Alzheimer’s disease symptoms has revealed “remarkable improvements. A recent study found three patients with Alzheimer’s disease (AD) saw reduced severe behavioral symptoms if they consumed less than a gram of turmeric each day, for three months.”
Read more at http://bit.ly/1IHZfAk

I’ve been taking Tumeric for more than a year. I haven’t seen any improvement. As a mater of fact, I have gone from Stage 3 to almost Stage 4. Maybe it works for people in earlier stages or maybe it is just me. I’m just saying what it has done for me,or better yet, what it HASN’T done for me.. Maybe it will work better for you.
Then there’s this . . .

Can What You Eat Help Prevent Alzheimer’s Disease?
http://on.wsj.com/1DAJzui

organic-vegetable-of-the-month-club-5-lbs-per-month-1

The MIND diet was developed by researchers at Chicago’s Rush University Medical Center, whose recent study found that certain foods could help prevent the onset of Alzheimer’s disease.

Although I grew up in New Orleans (the worst place to live if you want to eat healthy but some of the most delicious food you have ever eaten. OMG how I miss that food!) my mother always served us balanced meals. We always had a salad, a vegetable, a protein and a starch. Sure, back in the 50’s, 60’s and 70’s, there was a lot of grease or other fats mixed into the food to make them taste absolutely wonderful. However, my Mother was the poster child for eating low cholesterol, low carb, low fat and high protein. She would even weigh the meat to make sure her and my dad only ate 4oz’s per serving, yet, she developed Alzheimer’s and my Dad developed Dementia.

I guess what I am trying to say is, the way I developed Alzheimer’s was because of the gifts of proteins and genes passed down from my Mother and Father which they received from their parents, and so on. I could have been a Vegetarian or a Vegan. I could have exercised every day and been the picture of health but I would have still have developed Alzheimer’s.

I’m now on Aricpet and will soon be on Namenda. These drugs are to help slow the progression of Alzheimer’s, giving those that have it a little more time time to enjoy the good parts of their lives. But, after a while, it no longer stops the progression and, well, you know what happens after that.

So, I am in no way trying to say that it’s a waste of time for people and companies trying to come up with ways to prevent this disease or cure those of us that have it. There have been some breakthroughs but still there is no sure fire way of preventing or curing this disease.

More funding is needed to come up with a sure fire prevention and cure. Without that, everything else is just fluff, or as I previously called it, a band-aid.

You and I both know that after while, band-aids come off and something else then has to be applied.

Until next time . . . .
PEACE!

Why I Advocate for Alzheimer’s

One of the main reasons I Advocate for Alzheimer’s is because of the 4 people in my life (my Grandfather, my wife’s Grandmother, my Mother and Father) who suffered and died from Alzheimer’s and Dementia.
Why did they have to suffer and die?

According to the facts from ww.alz.org

  • It’s the only cause of death in the Top 10 in America that cannot be prevented, cured or slowed
  • 1 in 3 die with Alzheimer’s or another dementia
  • Alzheimer’s disease is the 6th leading cause of death in the United States
  • THIS IS A BIGGIE . . . ONLY 45% OF PEOPLE WITH ALZHEIMER’s DISEASE, OR THEIR CAREGIVERS, REPORT BEING TOLD OF THEIR DIAGNOSIS.  REALLY???  REALLY??????
  • MORE THAN 90% OF PEOPLE WITH THE FOUR MOST COMMON TYPES OF CANCER HAVE BEEN TOLD OF THEIR DIAGNOSIS.
  • In 2015, Alzheimer’s and other Dementia’s will cost the nation $226 BILLION.
  • By 2050, these costs could rise as high as $1.1 TRILLION

Not being told that you have a disease that will kill you is unacceptable. In a CNN cover story, it was reported that, “Doctors are sidestepping this tough conversation. But why? That’s been studied too, and the reasons doctors give range from diagnostic uncertainty and fear of causing emotional distress to time constraints, lack of support, and stigma.”

I think back to when I was sitting in my Neurologist’s office and he was going on and on about this and that and I could tell he was beating around the bush, so me being me, I stopped him and asked, “DO I HAVE ALZHEIMER’S?” He paused and quietly said “YES!” I know it was uncomfortable for him to tell me but that’s why he’s a Doctor. He’s going to have t tell his patients unpleasant things every now and then. If you can’t do that, then take off the white coat, turn in your stethoscope and go do something else.

Another reason why people with Alzheimer’s disease suffer and die is because Alzheimer’s disease is severely underfunded. I wanted to know why so I did some research. I know this is just the tip of the iceberg but here are some of my findings. (each link is clickable if you want to read)

– Seth Rogen Gets Serious To Fight ‘Ridiculously Underfunded’ Alzheimer’s Disease
– There Is No Cure And Little Money To Solve Alzheimer’s Disease
– Alzheimer’s Funding Lags Behind Other Diseases
– Dementia research underfunded, former Health Minister claims
– Alzheimer’s Is Expensive, Deadly and Growing. So Where’s the Research Money?
– Alzheimer’s Deaths Vastly Under-Reported, Study Says

In the last article, which was published in Newsweek, it states, “Alzheimer’s is a fatal disease. Over 5 million people in the U.S. currently live with Alzheimer’s, and most have a life expectancy of 3 to 10 years after diagnosis. With that number in mind, how were only 83,494 deaths attributed to Alzheimer’s in 2010? The numbers just don’t add up.”

Did somebody flunk math? Who’s minding the Disease funding store?

If I sound like I’m pissed, it’s because I am. I cannot believe this country sends billions and billions of dollars to other countries for research, development and care for their diseases while we suffer and die because there’s not enough money to go around for the home team.

Now, I have Alzheimer’s. If this disease would have been acknowledged and funded like other diseases, there might be a glimmer of hope for me. Since that didn’t happen, my future is bleak. At 54 years of age, I never thought I would be facing the end of my life, but the end is not here yet.

Until that time and as long as I am able, I will do everything within my power to raise awareness and to raise funds for the future generations of people with Alzheimer’s. That means for all of you that read this, I’ll be hitting you up for money. But don’t worry, I won’t hassle you . . . too much.  😉

Until next time,

PEACE!