On the CP front -

I have mixed CP: athetoid/spastic with a bit of dystonia thrown in.  As I've aged, my spasticity has increased significantly. A year ago, I had the baclofen pump implanted with great results in terms of reduced spasticity. Everything was easier, even speaking, and I had much less pain. Unfortunately, I have had weird side effects from the baclofen. When I'm receiving therapeutic levels of the drug, my torso and head burn like I'm covered with Ben-Gay. Very uncomfortable, close to painful after awhile. We are going to add clonidine to the pump in May to see if that helps with the burning. I hope so - the pump has the potential to be very helpful. BTW, I'm the only one on record who has experienced this side effect. I would actually recommend the pump for help with spasticity and pain. 

My most painful area has been my left hip, which is arthritic and jumps in and out of its socket. We botoxed my hip last week. It has really helped with the pain and my hip is subluxing less. I forget how much energy pain consumes until I get some relief! 

I have also been doing Feldenkrais for many years and find it very helpful. If I could receive 3 or 4 Feldy treatments a week, I would probably be pain free most of the time. It is so frustrating that the state (through Medicaid) will spend thousands on pumps, refills, and botox, and would spend tens of thousands on major hip surgery, but won't pay for Feldenkrais. The state would save big bucks in the long run! I would like to be part of changing this.... I keep looking at grants, but money is so tight right now.... 

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