One more note – I emailed a few patients yesterday afternoon and got the response below regarding a preference for a wheelchair-mounted system.  I’ve already shared it with Margaret and she thought it might be interesting for the whole group to read.

 

FYI – the “floor mount” she is talking about is a flat base, not rolling mount so that changes the situation slightly but many of her answers still apply…

 

It also may be helpful to know that though she is vent-dependent and the disease is fairly advanced (3+ years), her caregivers are super-supportive and capable and her attitude is amazingly upbeat. 

 

Have a great day!

 

Amy

 

p.s. “mama” is our inspirational patient

 

 

Amy Wright, MCD, CCC-SLP

Speech Therapy Coordinator

(704) 355-0867

From:
Sent: Wednesday, July 16, 2008 4:17 PM
To: Wright, Amy
Subject: Re: Mounting, eye gaze and ALS

 

As for mama,

1) the floor mount wiggles....the wheelchair mount is more stable.

2) If I tilt her back, with Erica on a floor mount, she has to be recalibrated...with the wheelchair mount, nothing changes except she and Erica tilt together.

3) Once set up on the wheelchair, it is easier to get Erica positioned correctly than on the floor mount (too many variables with the floor mount).

4) It is much easier to transport Erica...she travels well from room to room and we have even found it possible to use her shopping for short stents.

 5) With thicker carpets, the floor mount does not sit erect and the weight of Erica causes the mount to lean into the carpet...with the wheelchair mount, this does not happen.

6) The floor mount took much floor space, the wheelchair mount takes none.

7) I now can carry Erica with mama to grandmama Hasty`s house, my son`s home, my sisters home, clinic, Lakeland shows, most anywhere we choose to go, plug her in and she can converse more ...before with the floor mount, it was waaaaaay too cumbersome and heavy and large and impractical to carry her everywhere we went.

8) If someone walked by the floor mount, it would wiggle, with the chair mount, it is not affected by what goes on around her.

 

Those are the things just off the top of my head. If I think of other things we prefer about the wheelchair mount, I will send them to you.

 

If mama were bedridden or not nearly as curious, mobile, and ready and willing to try new places and things as she is, the floor mount would be ok but for someone as "on the move" as she is, the chair mount is a huge benefit to her.

 

We always take Erica off of the chair to ride down the road, as it interferes with mama being able to enjoy the trip as what she can see is so limited and she cannot type with her while riding anyway....Erica lies on the bench seat in the back until we reach our destination, then she is easily remounted onto the chair. 

 

Hope this helps.