Still Terry

By Bud Focht

Hi, my name is Bud and my wife is Still Terry.

Six months ago a dear (nicer way of saying old) friend of mine from college days sent me a best-selling book by Lisa Genova called Still Alice. It is a story about Dr. Alice Howland, a Harvard professor who, like my Terry, is diagnosed with Early Onset Alzheimer’s Disease. The story is told from Alice’s point of view. What she goes through.

At that time I was just learning about this horrible disease and was looking forward to reading as much as I could about it. To date I have read almost a dozen publications on the subject, mostly text books, research papers and coconut oil recipes.

I was a little disappointed at first to discover that Still Alice is a fictional story, but then I found out that the author is not only a writer but a neuroscientist, so she knows of what she speaks (or writes).

I began reading the book back in the summer and it was pretty good. Alice and Terry were the same age and had many other things in common, as far as the early stages of the disease are concerned, so it was very interesting to me. But I had to stop reading it halfway through the book.  I couldn’t bring myself to read about the latter stages of this disease.  I wrote about this experience in one of my earlier blogs back in July, Head in the Sand.

Now I see that they have made a movie out of the book, with the same title, and it is due to be released next month. And I’m excited about it. I can’t wait for it to come out.

Don’t get me wrong, there is no way I am going to go see this movie. I can’t even watch the movie The Notebook. I saw some of The Notebook several years ago when either Terry or one of my daughters was watching it on TV.  I remember thinking it was a ‘chick flick’ and really didn’t pay too much attention to it. All I remembered about it was that it was a real tear-jerker.

Since Terry was diagnosed with EOAD, however, watching The Notebook or now Still Alice would for me be like peeling a few bags of onions. Only worse. More painful.

But I am very happy that the movie Still Alice is coming out and that the actress who plays Alice, Julianne Moore, is already being talked about as an Academy Award nominee.  To prepare for her role Moore met with the head of the national Alzheimer’s Association, underwent a battery of tests and hung out with many patients suffering from EOAD.

Movies get so much more attention than books do, even though in my opinion movies based on books hardly ever measure up.  But, in today’s world when most people don’t have the time it takes to read a book, they can still find two hours to watch a movie.

No, I’m not going to see Still Alice, but I am excited about it coming out because so many other people will hopefully see it. I am happy about the fact that a movie about EOAD may be seen by millions.  This will certainly help raise public awareness.

Most people associate Alzheimer’s with senior citizens. And with good reason. Of the 5 million people in the United States who currently have Alzheimer’s, all but 200,000 of them are 65 years old or older.

My Terry is only 55 years old.

I promised myself back in the summer that as Terry’s illness progressed, I would go back and finish reading Still Alice, to maybe help me realize exactly what she is going through, what she is feeling.  She is so quiet these days. But it is not like she is in a fog or in a daze. She knows what’s going on.

For now, anyway. For now, she is Still Terry.  Sure, she cannot do many things she used to be able to do, but her personality is still there. Her love of sports and exercise is still there. Her love of being with me and with our kids is still there. Her love of visiting her family is still there. Her sense of humor is still there. And she still has her extraordinary faith.   One thing that Julianne Moore found out while researching her role was that “People think personalities get obliterated with Alzheimer’s, and I found out people’s personalities come through loud and clear,” she recently said in an interview about preparing for and making the movie.

My wife is Still Terry, thanks in part to the medicine she has been taking since May.  The doctors warned us that these meds will not improve Terry’s condition, won’t even stop it from getting worse. But they will slow it down. Unfortunately, after a while these meds stop working. The doctors said the meds should give Terry another year or two, before things get bad.

I won’t read the end of Still Alice to see how bad, but I have a rough idea. I have done some research. I have read quite a few non-fiction books on Alzheimer’s. People associate Alzheimer’s with memory loss, but that isn’t the half of it.  That’s just the beginning. Alzheimer’s is the sixth leading cause of death in the United States. More people die of Alzheimer’s each year than breast cancer and prostate cancer combined.   About 500,000 last year. People don’t die from losing their memory.

But I won’t get into the gruesome details right now. Just as I won’t read the second half of the book, or go see the movie. Maybe my head is still in the sand. But back in the spring Terry and I decided to begin to live for the moment, live for today. I no longer look too far down the road. It is ugly down there.

These days I am just grateful that my wife is Still Terry. And I am grateful that they made a movie about what she is going through, what we are going through. Hopefully it will generate more public awareness, more contributions to end Alzheimer’s and possibly more years of my wife being Still Terry.

Until next time,

Still Bud