Dec 1, 2010

Does Dotty Have Alzheimer's Disease? (Part 1)

Some readers are starting to question whether or not Dotty really has Alzheimer's disease...
By Bob DeMarco
Alzheimer's Reading Room

This does not surprise me. The website is growing so fast that the majority of the readers are relatively new to this space.

Now many of you have been here for sometime, and as far as I can tell none of you are questioning our veracity.

It is my intention to address this issue and how we arrived to where we are now in a series of articles. It is not like I have been keeping any of this a secret since November, 2008.

For now, I'll put the issue of whether or not Dotty really has Alzheimer's disease to bed.

Dotty was officially diagnosed more than 6 years ago.

In January, 2010, Dotty was examined for admission to one of the Dimebon clinical trials that required substantial testing to determine if she was in the moderate to severe stage of Alzheimer's disease.

This testing was done at Brain Matters Research in Delray Beach. Dotty did receive testing several years earlier at Brain Matters Research, so we were also able to compare those tests.

Dotty was diagnosed as in the moderate to severe stage of Alzheimer's disease in 2010 at Brain Matters Research.

Point. I am not the one that diagnosed Dotty.

I can say, I knew what was happening long before the "official" diagnosis came in 2004. In 2004, Dotty finally had a series of test to rule out other possible causes of her memory problems and behavior at that time.

The MRI along with the tests indicated "probable Alzheimer's disease", ruled out some of the other dementias, and ruled out other possible illnesses and diseases.

It appears that since I started doing the podcasts (Cinchcast) and the YouTube videos, some people have trouble believing that Dotty has Alzheimer's disease. I can understand how they might come to this conclusion. Well, kinda, sorta.

When I published this video -- Dotty Live, Ice Cream Time. The issue really started to pick up some momentum.

I have to tell you, I was as surprised by the video and how it turned out as much as anyone.

It appears that our recent podcast -- Dotty Says, Maybe I'll Make a Couple of Bucks (Cinch), really brought out the doubters.

Let me tell you. When Dotty woke up in the morning that day, I could not believe my eyes. Dotty had a very "bright" look on her face, and a big smile. I immediately decided to go for the Cinchcast.

And, like just about everyone, I was very surprised by the end product. You see, even I sometimes get surprised by these behaviors and interactions. For me, pleasantly surprised and elated.

When I made the swimming pool video -- 94 Year Old Alzheimer's Patient, Dotty, Goes to the Swimming Pool (Video). I was trying to make a simple point that like most Alzheimer's patients Dotty does say "NO". In fact she says No over and over throughout that video. She even says NO when she already has her feet in the water.

Here is something you don't know. I had 45 minutes of video that was edited down to 3 minutes. I doubt that very many readers would watch 45 minute of tedious video. This would have included the more than 20 minutes that it took to get Dotty to the car, up the ramp and into the pool area, and down the steps into the pool. The same trip takes me two minutes by myself. I don't drive, I walk.

There is one thing that does interest me about these podcast and video's. I have been telling Dotty all along that she is going to be a movie star. I think she now believes she is going "Hollywood". Somehow she really rallies "up" when I tell her we are going to make a video.

I mentioned to Carole Larkin that I had to figure out how to leverage this "new found behavior" up. Carole's simple advice? Make more video's. Good advice.

I would also like each of you to understand this. You won't be hearing any podcasts or seeing any video's that put Dotty in a "bad" light. I am not interested in capturing the bad stuff. Even if I do capture some of the bad stuff, I have no intention of making it public.

There are a few very nasty things that Dotty said to me way back near the beginning. I have never told anyone what she said. I didn't say or tell because I didn't want to put Dotty in a bad light. I might tell someday, but only if I believe that it would accomplish something positive. It will not happen while Dotty is alive.

Now you might think that I am "angry" or upset that some people are questioning our veracity. I am not.

In fact, I am greatly encouraged by anyone that concludes after a few minutes that I am full of blubber. What they are really saying to me is, you are doing a great job.

So, thank you.

Also thanks to each and everyone of you that makes positive and encouraging comments under the podcasts and videos.

Now those, I really do appreciate.

That was so wonderful to listen to Dotty sound so "normal". All your patience and problem solving really works wonders. We all need to be as positive with our loved ones as you are.

Enjoy every moment you can with Dotty!

Thank you, Rosanna.

Next time up, it didn't happen overnight, and we made it happen.

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 2,101 articles with more than 272,100 links on the Internet. Bob resides in Delray Beach, FL.

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