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!

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

Still Alice – A MUST SEE!!!

Still Alice – A MUST SEE!!!

Dallas News reporter Jeffery Weiss published an article about the Movie, “Still Alice” and said,
“There’s a new movie out that’s getting good reviews. ‘Still Alice’ stars Julianne Moore, a fine actor who’s been nominated for an Oscar in the role. It’s the story of a brilliant, successful woman who develops dementia. No less than Jon Stewart says it captures the loss and descent brilliantly.”

He then goes on to list the reason why he won’t see the movie . . . all because of a book he read 40 years earlier, Death Be Not Proud by John Gunther. He writes, “It was also the most terrifying thing I’ve ever read. Part of the strength of the book, why it was chosen for teenagers, is how clearly Johnny is portrayed. He was pretty much everything I aspired to be, so of course I identified with him. Which made the suffering that much more real.
Too real. For several years, any time I got a headache a little part of me whispered “Your turn!”

I read that book also. Yes, it was a tragic story about a young boy who develops a brain tumor and then dies, but then again, there are many books (I hope he has never read a Nicholas Sparks novel) that deal with similar stories. Be it truth or fiction, you can’t just bury your head in the sand. It happens in real life and there’s nothing you can do about it except deal with it.

I equate burying your head in the sand as to turning your back on knowledge. Yes, there are things in life that we DON’T want to hear about or see. I didn’t want to see my Mother and Grandfather struggle with Alzheimer’s. I don’t like looking in the mirror seeing, “Early Onset Alzheimer’s” written across my forehead (it’s not really written on my forehead, but it may as well be) but it’s there. I wish I could be like Mr. Weiss and just say, “I’m not going to deal with this today because it may make me uncomfortable.” Unfortunately I can’t.

What I can do is deal with my EOAD, speak with and support those who are also suffering from this horrible disease, share my knowledge of the latest information I come across and Live in the Moment. Each day I make memories with my family. I try to remain as upbeat and positive as I can for those are the memories I want them to recall. I don’t want them to see the dark side. As hard as I try, it does come out in their presence but they NEVER, EVER turn their back on me.

As soon as “Still Alice” comes to a theater in my area, I will probably be the first in line to get a ticket. Yes, I want to see the extraordinary performance of Julianne Moore but I also want to see how the movie portrays Alice’s future. It just may help in my own future.

To Jeffrey Weiss from the Dallas News, “for those of us who have Early Onset Alzheimer’s Disease, we wish we had the option of not seeing the things we didn’t want to see, not feeling the things we feel and not being scared shitless about our future. Sooner or later, your head will have to come out of the sand so you can breathe. When you do, instead of trying to escape from all things you are afraid of, learn from them and then share that knowledge. You never know who you are going to help.”

Until next time . . . .