First, if you are a quadriplegic, I want to thank you. About a decade ago, my 13 year old daughter become desperately sick and there didn’t seem to be much hope for her (a story for another day). After my three months of family leave to care for her ran out, I got in my car to commute to the medical center, sobbing uncontrollably as I drove. I couldn’t stop working because I needed the health insurance my academic job provided. I put some makeup on in the car and dragged myself into the wound center. The first patient I saw was a man paralyzed from the neck down, lying on a stretcher, who greeted me with, “Good morning, Dr. Fife! Isn’t it a beautiful day today? By the way, could you scratch my nose?”
That man will never know the impact he had on my life. My immediate thought was, “OK, God, I heard what you just said. Thank you.” No amount of counseling or commiseration could have made such an impact on my life – for the rest of my life. Here was a man who could not scratch his own nose, but he was able to be cheerful and minister to me when I was down. This is my collective thank you to all the people with spinal cord injuries who live lives of courage and fortitude.
I have blogged about my frustrations and anger over Curtis and Bynthia Gates’ situation. The good news is that after being turned down by a dozen home health agencies (despite Curt’s having both Blue Cross and Medicare), Lifespark was able to send a Certified Nurse Assistant (CNA) to shower Curt one day a week. I don’t know her name, but she was wonderful and caring and I am grateful to her. Thank you to all the CNAs out there who care for patients – what you do is really important.
Curt can get some intermittent nursing care for his catheter, but he’s still at home on a ventilator with no personal care attendant (PCA). His wife Bynthia has not left the house in months and she is trying to work from home, too. I never gave too much thought to the infrastructure necessary for a quadriplegic just to show up in my clinic. While sometimes they are stretcher-bound and brought by ambulance, often they are in a highly sophisticated electronic tilt chair, and they always come with at least one PCA and often other people. I do admit that I can only remember two patients who arrived on a ventilator. My receptionist pulled me out of an exam room, wide-eyed, to say, “You know that new consultation? He’s arrived in the waiting room – on a ventilator.” It might have been nice to have some advance warning about that, but on the other hand, ahead of time, I might have done the same thing that everyone else does when they hear about Curt – panic and say I wasn’t prepared to deal with anyone on a ventilator. But I digress.
My point is that I’ve almost never seen a quadriplegic in the wound center who didn’t have a PCA. Naturally the patient is seeing me because of skin breakdown, but the level of care that can be implemented at home is usually better than the hospital because in order to survive for several years after a spinal cord injury (SCI), they’ve had to set up a very elegant system that frankly does not translate well to the hospital. And the PCAs they come with are usually amazing people who can follow just about any instructions I can dream up. It’s a pleasure to collaborate with them. But in all these years, I never asked where PCAs come from. After more than three decades, I’d like to know, how do patients with an SCI get a PCA?
It doesn’t seem possible for Curt to get a PCA despite having Blue Cross and Medicare. It seems that unless you pay cash, the only way a quadriplegic gets a PCA is by having state Medicaid. That pisses me off – but then, so do lots of things. My point is, I’d like to understand how all those amazing spinal cord injury patients get this figured out. I am asking for help. If you have an SCI or you are a PCA, please message me. If you can help Curtis and Bynthia figure this issue out, I’d be grateful. And for what it’s worth, they live in Minnesota.