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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15 thoughts on “A Day with Jeff — Technology and Essential Tremor

  1. I'm from Madrid (Spain) and being diagnosed of essential tremor with just 17 years old was hard to me because actually I´m 19 and I find really difficult to do some things such as write or even eat and it's becoming worse.
    I have to say thanks to Jeff the one in this video because he gives me hope and also a humorous way to see this disease although I'm accept it a bit more everyday.
    Thank you so much

  2. Focused Ultrasound is now available to provide relief for your tremor condition, and I’m confident you know all about the treatment and have probably undergone the procedure! If so, I hope you’re happy with the result!

  3. How can he still drive? Im trying to learn to drive but its very difficult even tho my tremors are a lot less significant, but im also shaking from my legs thats probably why

  4. I have essential tremors and its been 50 years without any help. I wish their was a way that we could share our experiences. I believe I've tried everything I could, from medicines, weighted utensils, booze and creating my own gloves that didn't work. Watching this video, I have the same intensity that Jeff has and its very hard to be independent. I'm certainly tired of being fired from doctors care, because of no cure.

  5. Believe it or not Jeff, your Essential Tremors are mild, compared to mine. I was on Primidone for 35 years. I started at 50mg a day and it did help. As time went on the tremors got worse and the the dosage increased. Fast forward 25 years and I was taking 1500mg of Primidone a day and the Doctor told me that is the max he can prescribe.

    One day 5 years ago a friend told me about DBS Surgery. My Doctor had never heard of DBS (deep brain stimulation). I called the hospital to talk to somebody about DBS. Four weeks later I was talking to the Doctor that performs the operation. After a series of tests it was determined that I was a good candidate for DBS Surgery. Six weeks later I had the 7 hour surgery. For me, the recovery was extremely painful for about 2 months but having lived – sorry – existed for all those years I would go through it all again – in a heart beat.

    It's been 5 years since my surgery and at least 95% of my tremors are gone. I should say, controlled. No more medications.

    Ask your Doctor about DBS. If he doesn't know contact your Hospital and ask for the Neurology Department. Tell them you want to talk about DBS and Essential Tremors.

    DBS surgery has given me my life back. BTW, I was 61when I had my surgery.

    I wish you well.

  6. I now have days where my tremor is starting to look like Jeff's. I do find at the moment that using big, chunky heavy cups and heavy utensils is relatively effective at damping the tremor down. However I'm only 49, the tremor is only going to get worse. At some point in the future I may well be considering the surgical procedure now available to reduce the tremor by putting a small lesion on a specific part of the brain. It'll have to be very bad though before I go that far!

  7. I have essential tremor and am 61 nearly 62 now (Aug. 2019). It is painful to watch Jeff struggling and he has a great attitude but it's not fun. Mine may not be quite as pronounced but I am considering Deep Brain Stimulation surgery that would help my dominant (left) hand function more normally. It is of course scary to think about surgery but I think my quality of life and emotional life may improve considerably. No meds. seem to help it and I'm not a candidate for Focused Ultrasound which though causes permanent change to the brain while DBS is reversible if necessary. It's all scary stuff to me.

  8. My E tremors started when I was 28 yrs old. I am now 72, but my tremors aren't as bad as Jeff so far. I keep thinking about Ultrasound for the tremors. I would love to talk with some people who have had it done, and how they feel after 2 years.

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