His neck muscles have become too weak for him to operate the chair with his head. In the last couple of years, he has relied on me to drive and make all seating adjustments like tilting and reclining.
The way he controlled the chair before was with three buttons on a head array. Each button had a separate function. The button directly behind him was the one to drive, but when his neck became too weak to lift his head off of it so he couldn’t slow down or stop in time. He’d crash into things, causing his head to fall down hard and hurt his neck.
Since he could not keep his head off the back button (which was the ‘go’ button), we had to disable the entire head array. The other two buttons enabled Brian to be able to tilt and recline the chair himself. That meant yet another loss of independence for Brian and added tasks for me.
In late 2018 we started hearing about new technology that would give Brian the ability to control his powerchair with his eye gaze software. We got so excited!
Not only that, but power chairs have made significant improvements since Brian got his back in 2014, and he could be so much more comfortable.
We started looking into the process to get Brian a new chair.
Three things are required in order to have a power wheelchair covered by most insurance companies, including Medicare.
1. A face to face visit with a medical doctor or nurse practitioner (MD or NP). This visit is so they can provide a letter of medical necessity to the insurance company.
2. An evaluation and write up by a Physical Therapist (PT).
3. An Assistive Technology Professional (ATP) to do an assessment and wheelchair fitting.
In order to obtain those things, we would have to take Brian to Emory to get the letter from the doctor because that requires a face-to-face visit.
We would then have to go to a different location in order to get the physical therapist and ATP evaluation.
Taking Brian to the doctor is an all-day affair. It’s exhausting for both of us. The thought of two doctor trips was so much for Brian that he just said forget it, he would just be uncomfortable until he couldn’t take it anymore.
That broke my heart but every time I brought it up, he said no thanks. If he’s going out, it’s going to be for something fun. I don’t blame him!
Fast forward to 2020. As awful as a global pandemic has been, there have been unexpected benefits, and one of them has to do with being able to do televisit appointments.
This is huge for ALS patients! I repeat this is HUGE for ALS patients!
We were able to do a Zoom call with Brian‘s neurologist at Emory for the face to face visit.
A few days later Rachel (PT) and Rafy (ATP) came to us to do the evaluation and the fitting for the chair. We were a little nervous about coronavirus, but we did the evaluation in our garage and they both wore masks.
Those two things changed everything. If they hadn’t happened I’m not really sure when I could’ve convinced Brian to make two long trips out, which would’ve taken two full days and everything out of him.
So here we are. The new chair will be here soon. This is going to be a game changer! One thing we’re both excited about is that the chair will raise so that Brian will be eye level with me. That in itself is big for both of us, yet Medicare will not cover that seat riser. Thank goodness for Team Gleason! Stay tuned, as I’m going to talk about this in a separate post.
For now, we’ll be getting things set up and tweaked. It will take some time for both of us to adjust to it but I’m so excited for Brian! Woot!