PPMD Community

Gregory's Comments

At 8:33pm on February 19, 2017, Prasad Surampudi said…: 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 asurampudi@gmail.com. we are very excited to hear from you. Prasad

At 11:55am on December 8, 2010, Laurie Barton said…: Thanks for the info. There's a lot to find in a new area. Laurie

At 7:45pm on March 30, 2009, Chris's Mom..Chris Wade McClusky said…: How old are you Gregory? When did you lose the use of your hands?

At 12:03pm on March 14, 2009, cheryl cliff said…: Hi Gregory,

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.

We'll do what we can,
cheryl

At 7:00pm on March 13, 2009, Chris's Mom..Chris Wade McClusky said…: Christopher's father is very involved in his life. But I don't think he talks with his father as much as he tells me things. We're not together.

At 11:24pm on March 12, 2009, Chris's Mom..Chris Wade McClusky said…: 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.

At 11:11pm on March 12, 2009, Chris's Mom..Chris Wade McClusky said…: 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.

At 11:49am on February 19, 2009, Heidi Miller said…: HI Gregory! I have a 23 yr old son, Mitch who would love to chat with you. He is an amazing young man, as you shall see! He has a blog, please check it out: mitchballsworld.blogspot.com.

At 1:24am on February 17, 2009, Kim Innabi said…: Hi Gregory: Thanks for the invite! I just joined. Take care,

Kim

At 12:01am on February 17, 2009, Lee Ann Faeth said…: Hi Greg,

I'm not in the SFB area. We're in Los Angeles. :)

At 9:41pm on February 16, 2009, Paul Cliff said…: But I'm a Dodgers fan. This is going to be so hard. On the other hand, I could never refuse to join those few clubs that would have me.

At 8:21pm on February 16, 2009, Kari said…: Sorry, I live in the Los Angeles Area, so the Bay area group would not work for me. Thank you for informing me though.

At 7:16pm on February 16, 2009, Neup said…: Glad to join - thanks for making me aware of the group.

At 6:59pm on February 16, 2009, Joel Rhodes said…: I joined the group. Thanks for letting me know about it. I hope things are going well for you.

At 11:34am on February 15, 2009, Tanya Fleming said…: Is that your son in the Picture Gregory???

At 1:21pm on January 30, 2009, Katherine M. Reynoldson said…: Hi Greg,
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!
Katherine

At 7:26pm on January 29, 2009, Katherine M. Reynoldson said…: Hi Gregory,
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!
Katherine

At 11:42am on January 27, 2009, Joel Rhodes said…: 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.