When people have a specific type of Cerebral Palsy labeled spastic-quadriplegic, their brain sends messages to their body telling certain muscles to contract while other muscles seem to lay dormant. Now, this is a very unscientific way to describe this condition but the important thing to understand is that a certain muscle or muscle group pulls and pulls over years and years until deformities develop. It seems like a spastic-quad is very strong even when he or she is young, but it’s more like he or she is very tight. Muscle relaxers via a baclofen pump and surgery help, but can’t stop, nor reverse this constant pulling (spasticity). This means that wheelchairs must be engineered to stand up to incredibly unrelenting stress, stress which causes a fine-tuned chair’s adjustments to wear out rather quickly.
This month Angie is in the process of being evaluated for a new chair. This time we’re looking at the possibility of a powerchair again. Angie recently proved that she understands how to operate the control switch, so her therapist and I are reasonably certain she can practice and become a proficient driver (Years ago she tried it but ran into walls). So, as I’m thinking about the pros and cons of a power chair, I’m also reflecting on all her chairs through the years. Since she’s 44 she’s had at least 8 wheelchairs. A wheelchair must be made to last five years, because of funding limitations. Both private insurance or Medicaid, follow similar guidelines, or at least they used too. And after five years Angie’s chairs are worn out. Note that Angie is not unusual.
So, to get my head around another new chair, I searched for pictures of some of her old chairs. As I looked at the years of old pictures, I was amazed at how much improved the technology is today. When she was young her therapists were literally building her head rests with a board, foam and a staple gun. I remember one of therapist saying that she wished that a chair could hold the patient in a proper position like her hands. Today, Angie is well supported and reasonably comfortable in her chair with the two remaining challenges, one being her inability to hold her head up on her headrest, and the other being her hips, which refuse to rest into the seat, especially when she gets excited. Despite these issues, wheelchair design has come an incredibly long way since Angie’s early chairs.
Angie’s physical and occupational therapists work with the wheelchair provider and consult with Angie and me. This process will take months. Angie will try modified seating systems, footrests, and headrests and specific adaptations will need to be made by the wheelchair technician. In addition, this spring we have to decide to pursue the power chair or stay with the traditional chair. At first, it seems like a no-brainer, but the more I think about it, the more questions I have. A power chair (about $20,000) is more than double the cost of a traditional chair ($7000). She can only get one chair every five years. Even if she gets the power chair, she will still need to use the traditional chair because there will certainly be times when the power chair will be impractical, out of charge or in repair.
I have an idea, which I haven’t expressed to anyone yet. Would it be possible to build a seating system that would be compatible with the frame of her current chair and transferable to her new power chair? How can we increase the life of a wheelchair? What happens when the power chair battery is dead? Where will the funds come from to keep both chairs in good working order, if the seating isn’t interchangeable?
Dear readers, I’d greatly appreciate your input here. I hoping that a few people have some experience with wheelchairs and can offer ideas and share your experiences. I would appreciate any ideas or suggestions you might have that could help me make the wisest decision. I know Angie would enjoy the freedom to choose where she goes. This would be no problem in the home where she lives. She could go visit other cottages and staff some time on her own. But in the community, she will never be on her own. I wonder if getting her a power chair when she’ll never be able to be out alone is a wise use of funding. Any thoughts would be much appreciated.