Sep 27, 2011

Alzheimer's Reading Room Continues to Grow

Instead, one by one, people started coming here. They started sending me emails. Not nasty emails, emails of thanks and emails of encouragement. At first, I was overwhelmed. After it sank in, I started to understand. There are wonderful, caring Alzheimer's caregivers all over the world.

By Bob DeMarco
Alzheimer's Reading Room

It isn't easy being
Earlier today I wrote about how I gave me mother the "smell" test before she was officially diagnosed with probable Alzheimer's. Early Alzheimer's Symptom the Inability to Smell Odors.

Maybe some of you wondered why I put the head of the ostrich in as an image on the article? Did you?

Well most of us put our head in the sand at the beginning. A diagnose of Alzheimer's is hard to comprehend. It only gets worse. At first, you start to learn about what is likely to happen as Alzheimer's progresses. Horror, shear horror. At first, it does seem hopeless.

I suppose when I learned that Dotty couldn't smell, I started to pull my head out of the sand. It was harder than I thought. More like pulling my head out of concrete maybe. It took a while, but I finally got on with it.

I suppose it started when I finally realized, I am an Alzheimer's caregiver. I say realized because before I realized I was an AD caregiver, I didn't have a clue that there were Alzheimer's caregivers. They say there are almost 15 million of us now. Whew. Gives me comfort and scares me at the same time.

In 2004, when I started pulling my head out of the concrete, the horror was amplified by a simple fact, there wasn't much information on what to do or what you could do. This has changed. Thank goodness.

Another thing you learned back in those days was that there was no existing effective treatment for, and no cure for Alzheimer's. Still true today.

Over the years, I listened to some of the smartest people in the world say the same thing over and over -- they were shocked to learn that there was no effective treatment available for Alzheimer's. I am reminded here of Henry McCance the Founder of the Cure Alzheimer's Fund. Like me, Henry was use to solving problems and taking action. It is difficult to describe how you feel when you learn there is no treatment.

Like me, Henry found out the hard way that there was no effective treatment or cure. Henry took action by founding the Cure Alzheimer's Fund (CAF). The goal of the fund is to find a treatment and ultimately a cure for AD. The founders of the CAF mean business. They are paying the overhead of the fund out of their own pockets. This way, 100 percent of any monies donated to CAF go directly into Alzheimer's research. They don't fool around at the CAF. They are looking for deserving scientists that need money and they are getting it to them. Sometimes in as little as two weeks. They need more donations (money).

Tim Armour the President of the CAF told me the amount of money needed for Alzheimer's Research right now is like unlimited.

I believe in the Cure Alzheimer's Fund. I think they are gonna get us there, or help get us their. Rudy Tanzi says we might get an effective treatment for Alzheimer's by 2020. I hope he is the Kennedy of Alzheimer's.

Along the way, I decided to start the Alzheimer's Reading Room. After I wrote the first version of Are Alzheimer's Caregivers the Forgotten? members of the Alzheimer's community found me. To be honest, I was shocked at first. How did they find me in the big blue nowhere of the Internet? One by one they came and encouraged me to write more. I did.

In July 2009, Tony Polk changed my focus. He encouraged me to write more about my mother, Dotty, and more about what I was doing. I did. I got off the phone and started writing.

To be honest, I was reluctant to write too much about our life before then. Why? I didn't think people would believe me. I didn't want to read comments calling me a liar. The Internet can be a nasty place. A candy store for people that want to be mean and nasty.

I was wrong, it never happened.

Instead, one by one, people started coming here. They started sending me emails. Not nasty emails, emails of thanks and emails of encouragement. At first, I was overwhelmed. After it sank in, I started to understand. There are wonderful, caring Alzheimer's caregivers all over the world.

I guess you could say they had the same goal as me. They wanted to be the best caregiver they could be.

I believe I have as good an understanding of Alzheimer's caregivers as anyone on the planet. I certainly have a thorough understanding of how they think, how they feel, and how they care.

It isn't easy being US. Most of us could never have imagined where we are today. Few of us had a clue when we received the word -- Alzheimer's.

The Alzheimer's Reading Room is now the second largest website in the world that is specifically dedicated to Alzheimer's, Alzheimer's caregiving, and high quality information about Alzheimer's.

Nobody, nobody has more insight, advice and information collected up in one place.

This might surprise you. We did not spend one cent on advertising or marketing. Everyone finds us on their own. Most often via Google or via a support group. Each and every day we grow.

Unlike Avis we won't have to try harder to make it to number one. How do I know this? I know that there are still millions of caregivers that are looking for answers, insight, advice, help and support.

Sooner or later they will find us.

They will find us because we have a simple yet straightforward goal -- to improve the lives of Alzheimer's caregivers and persons living with dementia.

This is our message, this is our vision, and this is our mission.

More Insight and Advice for Caregivers

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 2,910 articles with more than 652,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room