Thursday, March 7, 2013
By the photo of the lemon tree, you can see I am still in Southern California.
The news about my brother is not good. It is hard to write this, but, as I have shared a bit about what is going on, I will do my best.
One of the horrible things about ALS is that you lose your ability to breathe. The diaphragm is a muscle, and since ALS attacks the motor neurons, the nerves that move your muscles, eventually, it stops working and you can not breathe. There is a new, experimental procedure where they use a device like a heart pacemaker to help with this. Instead of shocking the heart muscle, the device shocks the diaphragm, causing it to contract and force air into the lungs. The device stays outside the body, with electrodes going into the body to the diaphragm muscle. For this to work, the diaphragm must be still at least partially functioning. See, when the muscles stop working, they atrophy (waste away). When they tested my brother for this, it was inconclusive, but his breathing was still above the level they use to decide who can have the operation.
What happened is, when they implanted the wires, and tested the device, they discovered that his diaphragm had already stopped working. How could this be? He was still breathing fairly well. How could he breathe without using his diaphragm? It seems that he has been using his chest muscles to breathe. He was in such incredible shape, he had been a marathoner, tri-athlete, and often rode his bike to work. Only someone with super strong core could do something like this.
We are all devastated at the failure of the surgery. It was certainly not a cure, but, it could have given him 6 months to a year more of breathing. He is no worse off than he was before the surgery. It is just that hope has gone.