Jul 19, 2010

Dimebon - 12 Wonderful Weeks - The Miracle that was Ours

I had my old Dotty back for twelve weeks. Yeah, it was a kinda watered down version but not to bad. She even laughed the way she did in the old days. It sounded the same.....

By Bob DeMarco
Alzheimer's Reading Room

My mother was enrolled in the Dimebon clinical trial for Alzheimer's disease on January 6, 2010.

At the start, you have no way of knowing if the patient is receiving Dimebon or the placebo. The odds are the same as flipping a coin -- heads you have Dimebon, tails you don't. In the beginning, you are flying blind.


I said at the time that I would not write about my mother's experience in the trial until the end of the first 26 week period.

During the first four weeks it was impossible for me to tell if my mother had Dimebon or the placebo.

At the six week mark, my mother's behavior started to change and by the twelfth week it was nothing less than amazing. It was hard to believe and harder to keep my mouth shut.

I did write a few articles about my mother's new and interesting behavior on the Alzheimer's Reading Room. I never mentioned the word Dimebon. Long term readers were emailing me on the inside and asking -- is it the Dimebon?

My response?

Well, I couldn't be certain whether my mother had the Dimebon or not. We were flying blind. So I told them: either my mother has Dimebon, or, I am the world's greatest Alzheimer's caregiver, or, its a miracle. What other explanation could there be?

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It really started with the newspaper in the morning. Out of nowhere Dotty and I were discussing the news. We actually had a conversation. Dotty had opinions -- how long had it been since that happened? Dotty was actually looking me in the eye when we talked. There -- she was there -- more there.

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There was some downside. Once I caught Dotty in the kitchen eating handfuls of potato chips. She had managed to get the two step kitchen ladder, the tongs we use for cooking, and reached way up on to the top shelf of the cabinet, and snag the hidden bag of potato chips. Keep in mind, Dotty is short and small.

It didn't stop there. Once Dotty got her hands on the big bag of chips she stabbed in right in the heart with a knife. She couldn't open the bag with her hands, so she stabbed it right in the middle to get to those potato chips.

I was horrified when I found her. Dotty was smiling away, stuffing handfuls of chips into her mouth. I guess you could say -- she was happy as a lark at Willow Grove Park.

Once I calmed down, I was pretty happy myself. Both amazed and worried -- what the hell was she going to try and do next?

On one hand I thought, don't kick a gift horse in the mouth. On the other hand I thought, my job just got a lot harder.

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Then there was the time that Dotty went to Bingo and won 50 dollars. She managed to win the coverall game. This is where you have to get every number on your bingo card to win. She did it. She marked every number on the card -- by herself.

I walked into the bingo room to pick Dotty up, and there was Dotty smiling away with a nice tight grip on her fifty.

We get home. I put Dotty in her room to put on her pajama's. Next thing I know she is yelling Bobby Bobby come here. I think, oh crap, what is wrong?

I run up to the bedroom and there is Dotty with a twenty and five dollar bill in her hand. She is giving me half of what she won. She is one happy camper.

However, that is only half of the story.

In order to get the twenty and the five Dotty had to find the gold box where I put her money. Not only couldn't she find it for years, she didn't know what the hell I was talking about when I would say to her -- you have plenty of cash its in your gold box. For years when I would say this Dotty would respond -- "What gold box."

Not only did she find the gold box, she figured out that half of 50 is 25 and made change.

I am not lying when I tell you this -- I actually said out loud -- what year is it? This is what I was thinking.

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Many of you enjoyed the series, Dotty Says.

You might have noticed that the series started in April and then ended abruptly. It ended when Pfizer Medivation pulled the plug on the Dimebon clinical trial.

You might ask why? It stopped because Dotty stopped saying the things she said in those articles. We didn't have any material for new articles.

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As for me. Well I found myself wondering as Dotty improved -- How long is this going to continue? At the week twelve mark Dotty scored significantly better on every test. I was already thinking ahead. Is this going to continue to week 26, or are we going to crash and burn? How about week 36, 46, 56?

I did do one very smart thing. I took out my Leonardo da Vinci pad and started writing down all the ways I might feel if we crashed. How I would deal with it? I gave this considerable thought.

As it turned out, I was mentally prepared when Pfizer Medivation pulled the plug on the Dimebon clinical trials. After the Connection Study failed I knew this was a real possibility. I was surprised that it took them so long to pull the plug. Although, I was secretly hoping we would make it to week 26.

Can you miss something you never had? Just about every day I wonder what would have happened in weeks 18-26. Would Dotty continue to improve? Would we hit the wall? Will I ever stop wondering about it?

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I never wrote or said the words that follow until now.

It was a miracle. After week twelve I was thinking that I had Dotty back. I might have told Max, but I know I didn't tell anyone else. I was afraid to say it or to tell anyone what I was feeling and thinking.

I had the older, 93 year old, pre-Alzheimer's version of Dotty back. Yes, her memory was shot and she still kept telling me she was hungry. The difference was I could actually say -- we will eat lunch in an hour and Dotty would smile and say OK. Interaction.

Dotty and I could discuss the news and she would give me an opinion. Mostly she told me we are heading for another depression. If you read the front page of the south Florida newspapers these days you will understand how she might come to that conclusion.

Dotty made comments about Raymond, Seinfeld and Kramer. She even made comments about the movies on television.

There was only one thing that bugged me. Dotty still couldn't walk a long distance. Let me tell you, if Dotty had started walking we would have been off to the beach, on the road on vacation. Let me tell you, I thought to myself if this keeps up we are jumping on a plane. Away we go.

This might be hard for some Alzheimer's caregivers to believe. I didn't care about Dotty's memory. What I did care about was her behavior, the way she acted, the ways she engaged me with her eyes, and the interaction/communication.

I had my old Dotty back for twelve weeks. Yeah, it was a kinda watered down version but not to bad. She even laughed the way she did in the old days. It sounded the same.

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I am not angry with Pfizer (PFE) or Medivation (MDVN) or anyone. I understand business. Its cold and cruel. Pfizer and Medivation have the data. It is not good enough to get FDA approval or they would still be going.

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There is one thing that bothers me. Medivation never sent out a note thanking the participants and caregivers in the Dimebon clinical trial. I understand they are blind and they don't have our names and addresses.

The solution to this is simple. Big ad in the newspaper or on television.

I am pissed off about that.

Also see: Four Other Readers Write About Their Experience in the Dimebon Clinical Trial

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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,640 articles with more than 11,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room