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When I first got diagnosed, it was initially just a disconnect. I was stunned because I’m too young to have Alzheimer’s.
We had a two-hour drive home in kind of a dark cold winter night and all we did was cry. You just don’t know what to do with yourself and you just don’t know what to do with the news that somebody just laid in your lap. And it was like that four months. It was a very difficult dark time for us.
I started missing meetings. I started forgetting deadlines and I then started forgetting entire projects. The best way that I can describe it is if you think your mind is a desk, it would be like, while you were at lunch, somebody came in and took random pieces of paper off of your desk and you came back and sat down and didn’t realize that those were gone until somebody came up and said, “Hey! Why weren’t you at the meeting?” And you are left wondering, “There is no meeting.” It’s not as if you remembered that you forgot it, it’s as if it never existed in the first place.
I used to be a very hard driving corporate Blackberry totting executive technology guy. And now, my days now are very, very different. When you’re used to that kind of activity but you can no longer multitask, you no longer have the memory that allows you to do that work, you have to adjust to a much slower, much more sequential pace. Now, I’m a guy who keeps post it notes in business because we have sticky notes everywhere. At some point, I don’t really know when that was, it tendered me that every minute that I spend grieving over the things that I had lost and that I was losing, it’s a minute that I already forfeited to this disease. And I started to think more in terms of time left because you don’t know how much time you have but you only have some time and you begin to think whatever I want to do at that time, how I want to spend it. Do I want to spend it grieving? Do I want to spend it on a state of sadness? Or do I want to spend it doing the things that I want to do while can still do them? Doing the things that we need to do while I can still do them.
Through all of that, I guess it’s kind of this journey of discovery right now just seeing what’s next to doing what you can, adjusting to the changes in your capabilities when they come. That’s a lot better than the dark place that I started from when we first found out that this was our new reality.
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