pwc movement w/ loss of hand dexterity

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mich5

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PALS
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01/2012
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US
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west
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mid
I spoke with another patient with ALS and he had developed this idea to help him remain independent and use his pwc even though he is losing dexterity in his hands and was unable to use the button on the pwc or any of the adaptations of that (i.e., the goal post, etc.). It's a round piece of wood (piece of broom handle would work), with a bungee cord cut up and looped off the end and electrical taped to the piece of wood. His wife loops the bungee cord around the pwc control button and he curls his hands around he piece of wood and pushes the stick forward, back, or side to side. He's able to move around on his own and just lays the piece of wood across his lap when he stops and picks it back up when he's ready to move again.
 

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A suggestion for those that have not ordered their pwc's. PLEASE take my doc tors advice and stay 2 steps ahead. Even though I had lost the last of my right hand function, he had re co mmend ed the sip 'n puff or the head a rray. Most in sur ances will pay for those a dap ta tions in ad vance. It is hard to get them to pay after the fact. So think ahead. The head a rray costs between 5 and 9 thousand dollars.

Mich5, thanks for the in for ma tion. Ingenious mind your friend has.
 
I love my head array! But yes stay ahead- mine was spec'd at first with joystick and we had to stop the process in mid order (I.e. after 3 months!) to get it spec'd with head array. If your hands are going, skip the joystick.
Good luck!
 
Sue and other head a rray u sers,

Do you have the a tten dant con trols on the back of your seat? If you do, here is a hint if your head a rray ever stops working. Apparently there is a flip swi tch on the back that my husband acc i dentally flipped causing the head a rray not to work. Also, he has forgotten to turn off the atten dant controls which also dis a bles the head a rray.

I was deva stated to say the least. Waiting 9 months for my chair to stop working less than a month later. And how embarressing for the M D E to drive an hour for a house call to have it be the swi tch.
 
Oh yes, Kimberly, we are well acquainted with that switch! Gets knocked by accident all the time!
 
I'll also chime in to say you can get started on alternative drive controls and still keep the joystick, at least on my Permobil. I have two profiles for joystick, and two profiles for alternate drive.

And use your best physical capabilities for drive controls. The basic head array would not work for me, so I use even a different setup. I have left and right head array sensors for left and right steering, but use my left thigh to go and stop, and right thigh for the mode switch. My point is try to choose controls that match your capability.
 
I'll also chime in to say you can get started on alternative drive controls and still keep the joystick, at least on my Permobil. I have two profiles for joystick, and two profiles for alternate drive.

And use your best physical capabilities for drive controls. The basic head array would not work for me, so I use even a different setup. I have left and right head array sensors for left and right steering, but use my left thigh to go and stop, and right thigh for the mode switch. My point is try to choose controls that match your capability.

Ideally, everyone should have access to professionals who have the expertise and skills to know when to configure a chair that way.

In March, I'll be presenting on my experience providing power mobility to veterans with ALS at the International Seating Symposium. I'm currently in the process of looking for trends in how we are providing custom mobility equipment to veterans since we started our multidisciplinary ALS clinic 3 years ago. This includes identifying "go to" configurations and looking at what changes we have to make over time.

One of the things about our process for providing mobility equipment is our focus on optimizing user/caregiver usability, durability, and reliability during pre-fitting configuration. I feel that spending a little more time up front prevents some things from happening later, makes the fitting go more smoothly, and minimizes the need for future visits.

Surprisingly, I'm finding that most who start with a joystick are able to stay with a joystick although it may require somebody with the skills and expertise needed to get the joystick in the optimal location, support the user's upper extremity, and program the electronics.

This veteran is still going strong with the joystick although I would have expected him to be using the head array by now (My initial post was last December)

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Fortunately, BrianD, it sounds like you have a skilled individual working with you who knows how to configure the chair for your needs.

I'm following some of the posts in this thread and may even use them in my presentation. They provide some of the best evidence that, too often, we drop the ball after we get payment approved and an order form has been completed. As I see it, that is maybe 35% of the entire process.

BTW, that red switch on the ASL interface box is one of the first things I mention--usually before the person is even in the chair!
 
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