[Audio Described] A Day with Jeff — Technology and Essential Tremor
[gentle piano music] Shelley: It's just part of who Jeff is. It's just interesting to see, you know, what this phenomenon is that's affecting his body and--and, you know, how he copes with it and how we all cope with it. It's definitely been getting worse in the last few years. So it's become a bigger and bigger part of our lives.
[clattering] Shelley: So, hon, I'm gonna hang back and watch you make breakfast. Jeff: [laughs] That sounds good. Okay. [quirky music] Shelley: Jeff loves to cook and he's a very good cook. He likes to do things himself.
But, you know, sometimes he can't open things or he can't cut things. I don't want him cutting his fingers. Most of the time, he will try to do something and it's always an experiment. It's like your whole life, you're experimenting constantly to see what you can do and what you can't do. So mainly I just do what Jeff asks me to do. Jeff: I'm 61 years old right now.
And at some point in either my very late teens or early 20s, when I was doing a lot of backpacking and rock climbing, I discovered what at that time I thought was my just losing the stomach for rock climbing. I was getting a little shaky when I was on a climb. At that time, I just assumed maybe I wasn't cut out for rock climbing after all. I discovered many years later that I had a neurological condition called essential tremor that--that I did inherit.
My mother had essential tremor. My father did not. It's an intention tremor, totally influenced by emotion.
You don't see it, but as soon as I go to do something, especially a fine motor skill something, boom, it hits. Too much of a challenge. Common things like writing and feeding yourself really bring it on much more. It is a neurological disorder that gets progressively worse with age, and that has been the case for me. And so as I've gotten older, I've been put in a position of needing to find ways to adapt. Just in case you wouldn't otherwise notice, Shelley's utensils and mine are different. My utensils are weighted.
It's the resistance that's important. They're heavier because it makes it easier to not spill stuff. Like if--if I did this one-handed, the cream cheese would probably be in Shelley's face or on the window or something, because my tremor is very jerky. Shelley: You want me to do it? Jeff: No, let me do it. Shelley: Gonna keep trying? Jeff: Yeah. I mean, this--this is me trying to spread cream cheese one-handed, and I can do it two-handed except then the bagel moves. Dr Christine: It's kind of interesting. You can see it when you watch people with essential tremor as they get close to the target to what they want to do, touch, their tremor becomes more exaggerated.
The closer he gets to the target, the more off he will be. Jeff: It was very difficult to feel comfortable in a social setting. Would you mind, uh, doing the..
Because so many social settings include eating and drinking that the tremor would be worse, and I would feel like people would be judging me. I discovered that if people knew about my tremor, it was so much easier. Dr Christine: His tremor is one of the more severe ones that one will see. Yeah. Shelley: Oh, it's really bad. Jeff: Uh-huh. This is really good. [both laugh] man: Is it worse at the moment then it would ordinarily be if we weren't here? Jeff: Yes.
Yeah. So when we're eating breakfast, we often read the newspaper, and we can read the paper one or I have the newspaper on my Kindle. In some ways, the paper one is more convenient, except they don't make the pages that easy to turn. It's a lot easier to read it on here. Though I wish they didn't make these buttons so hard to push, but then, you know, turning pages is just a touch. Sometimes I like to read, you know, when I'm out and about, but it's basically the same idea. Shelley: Jeff is Mr.
Tech. This is a great opportunity for him to try all the latest. I mean, he's so creative in figuring out new things and coming up with new things. Jeff: I came up with the idea of reading at night with a Kindle being held up..
[chuckles] over my head because I really had no other choice. I couldn't turn pages well enough, and I literally did tear pages sometimes accidentally, and it was clear that wasn't working. This is the only mouse that I have found after trying many, many different technologies, and it's not even sold anymore.
The thing that's so good about it is that it wants to come back to center point, so there's a little bit of resistance there. I do a fair amount of typing, but one of the challenges is, if you're gonna do a capital letter, you can't use both hands together. But I've got a little special keypad here, so... And it saves me having to do the Ctrl+C or the Ctrl+V.
When I text someone, having the good predictive helps, but typing is probably the hardest thing for me. And, you know, if I'm in a theater or in a restaurant or something, I'm not gonna be going like this talking to my phone. Actually sometimes I do in a restaurant very quietly. But sometimes I just need to type.
Easier by far is to speak it, so now I am dictating, and my hands do not need to do a thing. I know that for a lot of people, technologies like that Liftware spoon-- just something that cancels out the tremor-- is a really valuable technology. For me, it's not as helpful given the jerkiness of my tremor. My ideal technology would be if someone could invent a fingerless glove, so I would still have access to my fingertips, but that would go up my arm, you know, past the elbow, that would provide resistance so that my tremor can't control my movements so totally. Interestingly enough, the best medication for people with essential tremor is alcohol, which, obviously, is not a kind of medication you want to take as medication.
When it wears off, it doesn't just wear off. My tremor's worse. Shelley: Eventually there may be a pill or something so that one doesn't actually have to drink alcohol and have all of the bad effects, but for the time being, it's really the only way that he can eat or drink in public. Jeff: You would be shocked at the reduction in my tremor when I've had a serving of alcohol. [bright music] Piedmont Avenue, Oakland, California. All right. [sighs] Every time I get into the car, my phone automatically links up to the car via Bluetooth.
And if I want to call Shelley, I can press this little button on my steering wheel... Woman: Please say a command. Jeff: Phone. Woman: Phone. Jeff: Vehicle phone book. Woman: Vehicle phone book.
Please say a number. Jeff: 1. Woman: 1.
Please say "dial." Jeff: Dial. Woman: Dialing. [electronic trill] Jeff: We're fortunate in Oakland to have the thing where if you've got the app on your phone, you can plug in where you're parked and how long you want to park for, and it'll remind me when my time is about to expire. [bright music] Every year, I try to come in. Just benchmark how-- how it's going. Dr Christine: Mr.
Pector, how've you been since I last saw you? Jeff: I have been doing well. Dr Christine: Has the tremor changed in any appreciable manner? Jeff: As always, just trending a little shakier. Dr Christine: A little shakier. So let's do a few things. Bring your shoulders up like this. Bring your hands out in front of yourself. Okay, you can see... Jeff: They say the odds are about 50/50 that if one of your parents has essential tremor that one of the children will have it.
Shelley: It looks like our daughter has essential tremor too. Although she's just 21. Dr Christine: This was something that you did actually ten years ago, so you can see things have changed, you know, somewhat. Jeff: Wow, that's ten years ago? Dr Christine: Ten years ago.
Shelley: You know, for me, it's not that big of a deal. I mean, I love my sweet husband, and it's perfectly fine for me to sign checks and fill out forms and things. It's--you know, it's just part of living together, and people help each other out, so that's what I see my job doing. And our daughters are also very thoughtful and very happy to help whenever Jeff asks for it. It's a much bigger deal for Jeff than it is for us. And often it's kind of funny. Jeff: Whoop! [laughs] Shelley: I think Jeff has a really good sense of humor about it. Jeff: Flying spoon! [laughs] [gentle piano music].
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