Column: Waiting for a Better Way to Control a Wheelchair By SUSAN PARKER

Tuesday June 14, 2005

Almost a year ago, a Kaiser Permanente medical equipment contractor suggested that Ralph use a device other than a head array to control his wheelchair. The head array uses an infrared beam and somehow, when Ralph moves his head in various directions, his wheelchair slides in and out of a variety of gears: forward, backward, up, and down. It is a miracle in modern technology that doesn’t often work as it should. 

One of the conveniences of using a head array is that Ralph no longer has a chin-controlled joystick in front of his face. The joystick made it impossible to get near Ralph, to put my arms around him, or give him a kiss. The head array was supposed to fix that. However, with the head array in place we quickly learned that if Ralph moved slightly in any direction while receiving a kiss, the wheelchair could leap forward or backward at the precise moment the kisser was leaning into him. There were safety issues. I could be fatally injured trying to get near him. His wheelchair needs to be in the right gear in order for him to be touched.  

But kissing or not kissing Ralph is not the biggest problem. A more pressing concern is that the head array makes the wheelchair too tall to fit into our van which we use to take Ralph to meetings and doctor’s appointments. In order for Ralph to get into the van, he has to put the wheelchair into recline mode. Then he has to switch into drive mode. It’s like steering a car or boat up a ramp while lying down. He can’t see where he’s going. And where he’s going is into a very small space that does not accommodate the length of the wheelchair when it is in recline position. There have been many accidents. Either the head array snaps off because he’s not down low enough to pass through the sliding door entryway, or his feet jam into the far side of the van because he’s too long. Always concerned with fiscal matters, we have opted for feet jamming over head array snapping. Going to the podiatrist is cheaper and faster than trying to get the damn wheelchair fixed. 

We agreed with the wheelchair expert that we should try the shoulder control gizmo. He told us it might take several weeks to process the order. We are accustomed to waiting. We gave him three months. When we didn’t hear back from him we called. He’d forgotten about us. So we met with him again. Now he wasn’t sure that the shoulder control was a good thing. After all, he noted, Ralph didn’t get out of bed much, and learning to use a shoulder control takes practice. 

I pointed out to him that the reason Ralph didn’t get out of bed often was because sitting in his wheelchair for more than four hours per day had caused bedsores that required years of care, and major reconstructive surgery. I reminded him that at our initial meeting the issues discussed had been Ralph’s comfort, safety, and health, not how often he lay prone versus sitting upright. He agreed to order the part that he had forgotten to order before. We made a tentative follow-up appointment and then waited. Later, the appointment was canceled. We were told the part had not yet arrived.  

It’s been over nine months since we first discussed and agreed to try the shoulder control. I could have conceived and had a baby. I could have taken a trip around the world, redone my kitchen, written a best-selling novel.  

According to the rules of Ralph’s health insurance coverage, every five years Ralph is allowed to get a new wheelchair. It’s been 11 years since his accident. After the first five years we ordered a new chair. It took almost a year to get it. I think I’ll call Kaiser and start the process of ordering another chair. But I won’t cancel the shoulder control. Why? Because in the end, I’m an optimist. Someday that part will come in and the wheelchair guy will remember to call us.