Riding Sideways: my journey with als

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I also had some wonderful friends and neighbors who altered pants for the winter and made me an adaptable jumper. I went through several types of beds and devices in order to attempt to sleep in my own bed. I already had a hospital bed waiting. I could not get comfortable and I woke my husband almost every night for some annoyance. He was still working at the time so this was a major inconvenience for him. I eventually gave up and slept in the living room in my lift chair. This worked OK for a while. I would occasionally have to call my husband on the home phone in order to wake him if I needed something.

You see, I lost my voice and my husband is hard of hearing. K arma. Several times I have had to use my iPhone call to wake my husband.

Now I have a Tobii that allows me to call, text or set off an alarm. My husband did not like the idea of me sleeping in another room so he went out and bought me a second lift chair.

Entering a new phase with MND

That is the most comfortable lift chair and it was on sale! I would recommend it to anyone. It reclines fully like a bed and gave me the most comfortable sleep. I had to give it up when I lost a lot of upper body strength and I could no longer use the sara stedy to pull myself up.

Riding Sideways: my journey with ALS

I was now begging to use the Hoyer lift to put me in and out of that hospital bed. I decided to give it a try again for the sake of my caregiver, my husband. The last straw came when I had a fill-in aide and I slid out of the chair and onto the floor. To my surprise, EMTs are not trained to use a Hoyer lift. Luckily my aide knew how to use it and helped get me off the floor. I still wonder how they would have gotten me off the floor if it had been an emergency. I now sleep in the hospital bed with lots of pillows and an air pressure mattress provided by hospice.

It works wonders. No more pressure pains waking me up in the middle of the night. My hubby loves that part a lot. Pillows under my arms has also solved the neuropathy in my hands so far. We still have problems positioning the Tobii at night.

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Part of the problem is that I can no longer use the remote control for the bed. Is there not one hospital bed company that can make a remote control with infrared IR technology? Having IR technology would allow me to and all eyegaze users to use their eye-tracking devices to change their bed positions. Losing arm strength was a huge fear. I cannot comb my hair, brush my own teeth, clean my ears, or scratch, pick, rub, blow, or clean my nose by any methods. You have to depend on some one else to do these things. Wedgies are a painful blessing when you go commando and I find that a sanitary pad works wonders when properly placed.

So are there any volunteers out there? I have learned to live with a lot of annoyances. I play a game that I call mind over matter to get past a lot of these things.

I want my caregivers to have lives too. I just imagine the pain away. It used to work when I had a leg cast with an itch I could not reach. There was no way I was putting something down the cast that would cause further problems. I will need to make another review tomorrow to see if I left out any goodies you just have to know about.

And I still have the cough from my 17 hour Florida nightmare trek home. Hospice nurse and priest visiting today; seems appropriate somehow. Hurrica ne Florence tried to screw with my bucket list. Related or unrelated to the trip, I had a PBA episode over communication issues so we drove back home ready to let ALS ruin another part of our lives. Those lemons make for a great lemonade, thank you Disney and Duke Hospice for taking care of the big and small details. We were able to make a short visit with friends from our former church in Hasbrouck Heights, NJ.

I spent the first day hanging around the hotel. The second day was a great day. We met with some friends who relocated to Florida. Of course, we had to move inside because Tobii Dynavox does not work outside. Funny how that is is not part of the sales pitch. Have any PALS come up with a solution for that? Besides being able to visit with friends, the rest of the trip has been a nightmare for me.

I am now stranded in Florida because part of I have been shut down. This was supposed to be my Goodbye trip to Mickey and Minnie and it was not a memorable one. The trip was a nightmare that will not be repeated by me. I know that I should have stayed home.


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They say you should go with your gut feeling. I only have myself to blame for not being more forceful. Basically, you wait until the car's system determines it's safe to turn on autopilot meaning you're cruising on a highway, and not near an exit or entrance ramp , then you press two steering wheel mounted buttons simultaneously and let go. It couldn't be easier. That's by design. Even as Audi engineers were developing the backend tech that lets the car handle itself, a design team was honing the UI based on extensive focus group testing in Europe, China, and the US.

They did an excellent job. Much like the car's exterior, the interior appears utterly stock at first glance. But little things identify it as something special. A line of LEDs stretches along the dash.

And there are two buttons along the bottom of the steering wheel—one for each thumb—that you press simultaneously to activate piloted mode. To communicate the transfer of responsibility to the autonomous system, the steering wheel retracts a few inches. It's just far enough to make it clear you are no longer in charge, but close enough to grab if things go sideways.

Because Highway Pilot is for highway driving only, the car makes it abundantly clear when you need to resume driving when, say, the highway ends or your exit approaches.

Andy's Journey: The Struggles through ALS

Audi's UI experts chose a combination of audio and visual alerts. Fifteen seconds before the transfer, the bluish-green LEDs turn yellow and a voice tells you autopilot will be turned off. Ten seconds before the transfer, the LEDs turn red and the steering wheel extends to meet you. If you fail to respond, the car activates its hazard lights and slows to a stop, moving to the shoulder if possible. The A7's trunk now holds eight PCs, which will be condensed into one unit the size of an iPad for the consumer version. Turning off piloted mode is easy: Hit the two buttons on the wheel, press the gas or brake pedal, or grab the wheel with a bit of force and you're in control again.

It's just that fast. And it's remarkably sophisticated—drumming your fingers on the wheel perhaps out of boredom doesn't do anything, but even the slightest turn will shut off piloted mode. I was supposed to take the autonomous A7 out for a few laps on VW's high-speed oval, but a glitch with the adaptive cruise control sidelined the car.

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Lipinski tried some quick fixes—which, as with all gadgets, included powering down and restarting—to no avail. We gave up for the night and headed for the hotel. Of course, we were halfway there when the engineers solved the problem. They hopped in and met us on the road. And so it was that I found myself behind the wheel of an autonomous vehicle for the first time.

I wasn't confined to the safety of a track, but on a busy street, among real people in real cars—at night. The issue here is the street has traffic signals, which the Highway Pilot system is not programmed to recognize you don't see a lot of traffic signals on I5 or I So I used piloted mode for cruising along, then reverted to manual mode when approaching intersections. Lipinski suggested I let the car do all the work, since it is programmed to maintain a safe following distance and avoid hitting anything in front of it.

Audi's engineers hadn't tried this before, butLipinski had enough confidence in the tech to let me be the first to test it. Damned if it didn't work at the next light, bringing the car to a safe stop two car lengths behind the guy in front of us. That hammers home a fundamental point about autonomous technology: It is remarkably advanced, yet still in its infancy.

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It works very well, yes. And it may, for better or worse, very well surprise us with what it can do. He meets MonkEC, a charming young artist, whose parents want her to study medicine at Harvard. She wants to be an anime artist. He assumes this is social suicide.