The Discworld still spins
Posted By Kathleen David on December 13, 2007
The news that Terry Prachett has a kind of a very rare form of early onset Alzheimer’s has lit up the Internet.
Terry’s Message on the Discworld Board
The number of fans of his work is amazing and the number that have come out of the woodwork is astounding. And no one is slowing down to think but the feathers are flying.
Terry is rather brave to put this out there for all to know. I liken it to when Michael J. Fox told the world that he had Parkinson’s. Now in both cases I have a feeling that they decided to be up front before someone in the media decided to “out” them and they would rather have this out on their own terms.
I know Alzheimer’s is a terrible degenerative disease. Personally I have had friends with parents and grandparents who have been affected. I don’t think anyone in my family has had it or if they did I don’t know about it.
But Terry has time before his mind goes and he is still working on the various books he has under contract and, knowing writers as well as I do, probably a couple more churning in his brain pan. We’re talking 20 years not next week. And that is the point that a lot of people seem to be missing. It is long term not something that is going to make him “go away” within the next year. He still plans to meet his obligations for the next couple of years. Because they caught it so early, there is more that they can do for him and he can do for himself.
However this news got me to thinking. This is probably the worse thing that can happen to a writer. If something happens with your hands there are other ways of getting your ideas out there but to lose your mind slowly. That must be torture. And you have the knowledge that your mind is slipping while it goes.
I have always been scared about losing the use of my hands. A lot of what I do creatively depend on the fine motor skills I have developed over the years. But it also depends on my brain since I have to work out in my head a lot of what I create. I know what things I have a predisposition in terms of my family medical history and I have told my doctor what they are. I know there is a good chance that I might lose my fine motor skills because arthritis does run in my family. But until then I plan to continue to make puppets and dolls and things. And keep an eye on medical science to see what is on the horizon that might help me in the future.
As is, probably, Terry and his family. Medical science has created cures for many things that use to kill us. Now other things that are showing up because we are living longer are being worked on. Once we solve those I bet another set of things we never thought about will crop up. We were never meant to be immortal (Highlander aside) but we can have a good life for what we do have on this planet. Which is what Terry is planning to do. Terry is one of the most optimistic people I have met with a wicked sense of fun and a love of bad puns. He has the right attitude to make it and I think he will with his sense of humor intact.
I am grateful for the couple of times our paths have crossed especially the first one when I hadn’t a clue who he was except he was working on a book with my friend Neil which he found funny.
Do you have a reason to think that he’s going to last 20 years? I ask in case you have any insider knowledge, not to be confrontational.
Because the average time a person lives after diagnosis is 8-10 years, and early-onset Alzheimer’s often goes much more quickly. My father died of early-onset this summer six years after his diagnosis and we were very surprised that it went as slowly as it did.
The sad facts of Alzheimer’s are that there isn’t much more that you can do for someone if you catch it early except maybe enroll them in clinical trials, because the drugs don’t slow the progression or prolong life, they just help slow down the symptoms for a while. He’ll probably function at a higher level longer because he got started on drugs early, but they won’t prolong his life, and the doctors don’t have any treatments for him that they wouldn’t have had if they had caught this later. We can’t possibly know how long he will be able to write – he might be very lucky and keep his language abilities intact for a long time, as some people do. On the other hand, language was where my father was affected first, and he was unable to finish a final paper before Alzheimer’s forced him to retire. Terry could lose the ability to find words early on, or his personality could change to the point that what he wrote simply wasn’t Discworld. Or he could be the same old Terry but not have enough short-term memory to be able to keep the threads of a plot together. Or maybe none of that will be the case and his spatial perception will be hit first, so he won’t be able to find his keys if they’re dangling in front of his nose or find his way home, but he’ll still be able to write. Nobody can predict the specific way Alzheimer’s will progress in someone. But from what I have read about Alzheimer’s and my personal experience of it, I would be shocked if he were still writing in five years, or possibly even three.
I very much hope that medical science will advance enough to help him. There have been some tremendous breakthroughs in recent years that they are still trying to implement as treatments. I’m glad he’s trying to stay optimistic and continue writing as long as possible, since exercising his mind is the best thing he can do to fight the symptoms. He and his family have a long hard road ahead of them and my heart goes out to them.