"Bob, So sorry to hear about Jonah. It strengthens my resolve to continue to do things with my sons while they are able, since you never know when the unexpected will happen. Our thoughts are with you and your family.
My Mom developed this idea for my sons, both of whom have DMD. She picked out the center front seam where a zipper might go opening the seam to the center crotch.. Then faces both sides, then sews velcro on both sides,and it…"
"Hi Betty, I'm so sorry to hear about your sons. Both of my sons have DMD. Found out when they were each 4 yrs. old. the younger was only 3 months old when we found out about the older son. I have one sister who has…"
"My wife and I completed this house in June of 2011. It is fully wheelchair accessible, with 36" entry into the elevator, both mastrs with roll-in showers, touch lamps, wheelchair lift into the pool and beach wheelchair. There's is an…"
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.