Is It Just About the Money?

Is It Just About the Money?

As a very active Alzheimer’s Advocate, I scour the Interweb daily looking for glimmers of hope. Whether it be stories of overcoming adversity, the possibility of new drugs that will help people instead of mice or humorous moments, I try to take in the positive.

With that in mind, I came across a story this morning entitled, “Eli Lilly’s big Alzheimer’s bet: Blockbuster or bust?” I thought, “here’s that glimmer of hope I’m always looking for,” but as I started reading, my heart sank. I should have noticed the story was written by NEW YORK (CNNMoney) but I was too involved in the hope that the story was going to be centered around an Alzheimer’s breakthrough.

Although I have Early Onset Alzheimer’s, I still have the comprehension that company’s need to make money to succeed. I get it.

The story started out on a positive note:
Drugmakers are facing an enormous problem — and a huge opportunity — and Eli Lilly is helping lead that high-stakes race. The pharma giant has made an expensive bet on an experimental drug that could be the first marketed treatment to slow the worsening of Alzheimer’s. That would represent a critical medical breakthrough known as “disease modification.”

I was getting excited but my mood quickly turned. The article became more about how much money Eli Lilly would make rather than how much the new drug would help people with Alzheimer’s.

“It would absolutely be a multibillion dollar blockbuster,” 

“The drug companies are willing to spend a lot of money on such a speculative, expensive trial because the market opportunity is massive. The numbers are staggering,” 

“Blockbuster sales possible: If the Alzheimer’s drug is successful, BMO estimates Eli Lilly could generate risk-adjusted global sales of $7.6 billion by 2024. That would make investors quickly put aside Eli Lilly’s struggles to turn the page on older blockbuster drugs whose patents have already expired.”

“Pharma companies are looking at Alzheimer’s disease because they recognize this will be one of the biggest biopharma markets of our lifetime by virtue of demographics,”

Jonas Salk wasn’t thinking about how much money he could make when he discovered the Polio cure.
When Edward R. Murrow asked Jonas Salk who owned the patent to the polio vaccine. “Well, the people, I would say,” Salk responded. “There is no patent. Could you patent the sun?”

One critic of the big pharma called Salk “the foster parent of children around the world with no thought of the money he could make by withholding the vaccine from the children of the poor.”

Where are the Jonas Salk’s of today?
I understand research costs money but it has now become a matter of “how much money will we make?” rather than “how many people will we be able to cure?” It’s so very sad.

Oddsmakers are giving Eli Lilly’s drug a 60% chance of success and believes it could meaningfully boost the company’s profit margins. If the statement would have ended after “chance of success” it would’ve been a great statement. Adding on the rest just proves the point that is really is all about the money.
Others are far more skeptical, putting the chances that either Biogen or Eli Lilly brings an Alzheimer’s drug to market at just 15%.

In the end, the only statement that I found truth in, but at the same time, sadness, was “In terms of drug development, nothing has worked. It’s been one failure after the next.”

I Have Alzheimer’s, BUT Alzheimer’s Doesn’t Have Me!
Until Next Time . . .

PEACE!

A Day in the Life

A Day in the Life

Busy Sidewalk
Picture yourself in a movie. You’re standing on a sidewalk…in a big city…at a busy intersection. You look around, everyone and everything around you is flying by at the speed of light. You try to concentrate but everything is “blurry-like,” happening so fast, concentration evades you.

Well, if you’re like me, you’re not in a movie. You’re in reality, under the age of 65, living with Early Onset Alzheimer’s Disease or some other form of Dementia.

I know I can’t speak for everyone, for everyone’s situation is specific to that individual, but I’m pretty sure certain similarities can be found.
For instance, you’re at a family gathering. These are people you grew up with, spent most of your life and time with, laughed and cried together, supported one another in times of need. You get the idea. Now, you’re sitting on a sofa, surrounded by these very familiar people and you cannot get into the conversations. You hear what’s going on and, under “different circumstances,” you would’ve jumped right in to add a comment, an insult or a funny remark, however, by the time you are able to form a complete thought, the conversation has continued at light speed and your comment or funny remark would’ve made no sense. Or worse, when you do try to jump in, you stutter so bad, everyone turns and stares at you. So you just sit . . . and listen . . . and try to keep up.
I experienced this at Easter this past year. One of my brothers-in-law noticed my embarrassment when I stuttered trying to jump in the conversation. ” He came up to me and said, “Hey, we’re all family here. Nobody’s going to judge you. Stutter away!”

This also happens in everyday life. Conversations with your immediate family are often interjected with, “you’ve told me that before,” or “oh, I remember when you asked me about that yesterday.” They do it in a way that is not insulting, but just as a way of saying, “we understand and we love you.” At least that’s what my family does with me.

I try to find humor in this by saying things like, “I know I told/asked you yesterday, I was just double checking. DUH!” Or when my wife and I are watching a movie and I get so excited or crack up laughing at a certain part, she will turn to me andLaughing say, “do you not remember seeing this movie a couple of weeks ago?” I say “no” but then I say, “you know, me having Alzheimer’s will save you a lot of money. You can buy me only 1 movie and I will watch it every few weeks and it will be like seeing it for the first time!”

Some people don’t understand humor when it comes to Alzheimer’s but, when you’re making fun of yourself and not others, well, I don’t see anything wrong with that.

I have always loved and embraced humor. Thankfully, my friends and family know and understand this and laugh right along with me. They send me jokes, funny sayings, cartoons … all Alzheimer’s related.
When I sent an e-mail to my brothers and sister, telling them of my diagnosis, my oldest brother sent back a response saying, “just letting you know, you sent this yesterday also.” After laughing hysterically, which I needed to do in such a bad way, I knew things were going to be OK.
One of my childhood friends will say, “hey, do you have that $20 you owe me?” Of course, I immediately go into panic mode, trying to remember whenI borrowed $20. This is a friend that will drive 3 hours, each way, just to come spend a few hours with me.

Then, as the saying goes, “Along with the GOOD comes the BAD!”
This is what I call my dark or foggy times. It happens with no rhyme or reason. It just comes along, punches me in the face and, well, things get a little dark.
AloneIt’s sort of like spontaneously combusting, except I burst into tears instead of fire.
I’ve always been an emotional person but since developing EOAD (Early Onset Alzheimer’s Disease) it has heightened the emotion. Something could set me off as simple as a baby or puppy video. Or, a fond memory will pop into my head of “happier, more normal times.”
Watching a sad or emotional movie? FAGHETTABOUDIT!!!! I literally fall to pieces. I cried for about 20 minutes after watching “American Sniper” with Bradley Cooper. (if you haven’t seen it, it’s a must see, but, I digress)
Then there are the times when I don’t know why I’m crying or even when I’m crying. Tears are now just so commonplace, I don’t even recognize that they are streaming down my face. Bizarre, I know, but Alzheimer’s is a very bizarre disease.

I know I’ve probably said this a lot (and yes, I do remember saying it over and over again! lol) but I am not saying all of this to gain sympathy.

I DO NOT WANT SYMPATHY NOR DO I WANT ANYONE FEELING SORY FOR ME!

I am merely trying to give you a perspective of what a day in my life is like.

DO ALL OF THESE THINGS HAPPEN MULTIPLE TIMES A DAY? YES!
EVERY SINGLE DAY? NO! (but more than not)
DO I WISH THIS ON MY WORST ENEMY? NOT “NO” BUT “HELL NO!!!”

I took on the responsibility of becoming an Advocate for Early Onset Alzheimer’s Disease. I don’t have the world stage of a Maria Shriver, Seth Rogen or other folks who are able to advocate in a much bigger way than me but, I do what I do for it is my passion.
In my Advocacy speech I say, “this is the best job I have ever had in my entire life . . . that I don’t get paid for!”
Trust me, due to my Alzheimer’s Disease, I’ve met some of the most wonderful, courageous, artistic, compassionate, beautiful people that a paying job would have never allowed me to do.

You gotta see the positive!!!

Until next time . . .
PEACE

B

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

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!

Fog: It’s Not Just a Weather Condition

Fog: It’s Not Just a Weather Condition

I’m frequently asked, “how have you been” or “how are you feeling?” or “how was your day?” My most frequent response is a little foggy.”

In an effort to help everyone understand what I am trying to say, I consulted www.merriam-webster.com and looked up fog. This is what I found:

noun \ˈfg, fäg\

: many small drops of water floating in the air above the ground, the sea, etc.

: a state of mental confusion

The second definition, as you may have guessed, is the one that I refer to.

To give you an example, imagine driving down the road. Fog has set in and visibility is obstructed. You can’t see much, you’re cautious of your surroundings because of the dense fog. All of a sudden, you break through to a clearing. You can see all around you. Your vision is clear and you can proceed as normal.

Fortunately, we all don’t have to drive in the fog every day but imagine having that fog in your head, every day, never knowing when it will roll in.
You get up to get something, the fog rolls in, preventing you from remembering where you are or why you’re there.
You’re in the middle of a conversation, the fog rolls in so thick it turns to night, blocking out every thought, rendering you speechless.
You’re driving to a very familiar place, again the fog rolls in and you have no idea where you are. You have to rely on your GPS to tell you where to go.

This isn’t just sporadic or a one-time event. This is every day, several times a day, a typical day. Sometimes the fog is thicker, sometimes less, but it’s ALWAYS there. It’s my Alzheimer’s journey.

So, if you ask me how I’m doing and my answer is, Foggy with a hope of sunshine,” you’ll know what I mean. I remain positive and hopeful that the sunshine will continue to show up and burn away the fog.

Thanks for reading. Hope your day is everything you want and need it to be.

Peace!

I’m Still Me!

I’m Still Me!

I may have worked with you at one time or knew you through work, but now I can’t remember your name. I know your face and I know I know you, so please don’t be insulted if I ask you your name. I’m simply trying to remember.

We may have been friends from years gone by or even as recent as a few years ago and I may have trouble recalling some of the good and funny times we shared. Feel free to recall those times with me. I may not remember all the details but it would be nice to recall those memories.

When we have a conversation, you may discover that I now stutter. I haven’t stuttered at any point in my life and those of you that know me can only imagine how much this bothers me. I’m proud of the TV shows, commercials and radio programs I have been involved with and I’m thankful for those times. I’m just glad the stuttering waited until now.

I may not remember something you just told me 5 or 10 minutes ago. Please don’t think it’s because I didn’t find it interesting or that I don’t care. My short term memory is not what it used to be so please don’t take it personally if I ask you something that pertains to what you just told me.

I don’t play my guitar or sing anymore. I’ve lost that passion I once had but I’m working on getting it back. It’s said that music plays a very big part in bringing back certain memories to people with Alzheimer’s. I still love music and I still listen to it but it doesn’t hold a candle to creating music. I’ll let you know how that goes.

The reason I’m sharing all of this with you is because at this point, if you see me or talk to me, I may not be the person you remember, but, “I’m Still Me!” 

  • Please don’t be afraid to joke with me. I still love to laugh.
  • Talk about old times.
  • Give me a hard time and mercilessly tease me (you know who you are! lol) or even send me or tell me Alzheimer’s jokes. I have found that humor lessens the blow.
    • Just so you know, some of the best and funniest jokes I hear are from the online groups I belong to. We may not be able to remember the jokes we tell one another but we at least have that funny moment we share with one another. 
    • no matter the case, LAUGH WITH, NOT AT!

Lastly and most important, although I have Alzheimer’s, inside “I’m Still Me!”
Treat me like you always have.
As a side note, Alzheimer’s is one of the most misunderstood disease. If you want to know about it, ask me or go to http://www.alz.org.

. . . Until Next time