Single parent, two adult sons who have DMD. Recently retired from teaching. We were born & raised in Los Angeles area. Recently moved back to Central Coast of California from Reading, PA area.
About my family:
Lived for 1 1/2 years in a barn we restored (a green, wheelchair accessible environment in rural Pennsylvania). Son, using Dragon Speak and an architectural program, designed our living environment; with input from all of us. We recently returned to California to warmer winters near the Coast. Caregiving responsibilities are shared with daughter-in-law and some in home health care assistance.
Name(s) of child(ren)/individual(s) with Duchenne:
Hi Laurie, I'm sorry I can't be of much help with your question regarding doctors in California. I live in So. Cali and have an HMO (Kaiser Permanante). I wouldn't recommend Kaiser - for me it's been trouble because I'm not with a group and there is no DME coverage. My son is 14 and I take him once a year out of network to Cincinnati, but we don't see all the doc's there and I coordinate all the testing through my ins. I remember exchanging a few messages with you a couple years ago. Glad your sons are doing good and welcome back to California when you come. Good luck!!!
I was reading your comment about your son's having hip/lower back pain. I also have the same problems. Have you ever tried an alternating air pressure mattress, I find that I can sleep all night and feel more rested the next morning. Most of my pain in caused from my wheelchair, cant get much relief from the pain. I have seen several doctors, however not much luck with that, instead they want to just give me pain drugs, which I currently use a pain patch, seems to help me. I am also trying to get an alternating air pressure cushion for my wheelchair.
Do you have any other suggestions that I might try? I am 38years old.
Well to the community. I am a genetic counseling student in the Philly area. My hope is that by meeting families affected by MD I will be more aware of potential obstacles and areas where families could be helped further. I would love to hear any suggestions or stories you would like to share.
Thanks for joining my group! Yes,travel by air is very difficult. Sorry I live in Northern California, so meeting you is not possible. Here is my email if your son would like to correspond with me.