Thank you for inviting us to join your group. We would like to email you if possible. My son is 21 and he will be in Mountain View, CA this summer. We are from NJ and are very close friends of Beverly and Anthony Devergillo. You can email us at email@example.com. we are very excited to hear from you. Prasad
I am going to contact a friend of mine who is a truama nurse here in So cal to ask her advice regarding getting some assistance your way. I don't think she has direct connections up in San J but she may know avenues for obtaining somebody. This may take awhile but please feel free to contact me if things seem to be dragging on.
Gregory, I think Christopher could use some counseling. I've suggested it to him but he disagrees...tells me he is 20 now and can do what he wants to do. He doesn't like to be told anything. I'm going to get together with his father and try to come up with something.
Hi Gregory, I have tried to get Christopher to do something. He just doesn't want to do anything. He doesn't talk that much when he does have a friend. They don't last long. I wish I could get him to go on the computer to talk to others with DMD but he doesn't want to.
My son is currently sleeping on a Hillrom air mattress (with an alternating air feature) which he does not use, says it makes him feel sea sick :-).
I think that there are alot of different products on the market and if you googles the topic you would find a lot of different options. We actually demo'd a couple before we found the one he liked. Most DME folks will let you try it before you buy it...(I would also check with your medical equip. rep. they could make some suggestions) Your primary care doc. or Rehab doc would be a potential resourse as well. (seems like each state varies as to the type of physician that handles the MD specific needs related to wheelchairs, seating, beds, mattresses etc.)
Conrad is currently sitting on a ROHO quatro, ROHO is the company name and they have a site on the web. They offer alot of different types Conrad's is a high profile (I think because he is not a large person) Basically the goal is to "float on top" of the cushion. It is supposed to relieve pressure, etc.
I do have a question for you... Do you have any problems with gastric distention? Do you have a feeding tube, if so what kind? If you do have gastiric distention how do you deal with it and are you able to relieve it successfully?
Hope my suggestions help with your pain, hang in there!
My son also has hip and sometimes lower back pain which we have atttributed to an issue with the way his rods were anchored to his tail bone when he had his posterier spinal fusion several years ago.
One thing you may want to look at is your seating system/type of cushion on your chair (though you have probably already done this)
Also, the type of pressure relieving mattress you sleep on could be adding to your discomfort.
Just a few thoughts...
My son takes motrin for his discomfort and that usually helps his spasms for at least awhile, we try to stay away from the hard stuff :-) it affects his ability to focus and concentrate. He is a senior in college so he needs to be able to follow the lectures.
Best of luck to you!
Just going through my list to say hi to people. I hope things are going well for you and your family. I hope that you have been able to find something that has been able to relieve your pain that you were talking about.