I am trying to find any groups that suport people who have been diagnosed with Central Pontine Myelinolysis?
94902
Has he gone to a sleep lab?  I can only help you chip away the sleep thing.  I use one of those CPAP thing nightly, now I am 61 years old and was diagnosed at 60.  I feel like I am in my 40's!  True sleep is wonderful, my whole adult life I never had a good night's sleep!  I also had a knee twitch that kept my brain from going into REM stage of sleep.  Thats where the eyes dart around, its like perfect sleep time, anyway I lived without it for 40+ years.\n\nI hated going to the lab and did not enjoy the whole idea of it. The idea of having something poked up my noise was not comforting! I HATED IT! BUT MY WIFE MADE ME GO !!!!\n\nThe lab was tolerable, but the results are unbelieveable!\n\nTHE DARN MACHINE WORKS MIRACLES!  SO ... LIKE A SAVED SINNER,  I AM HERE TO SPREAD THE WORD, TELL THE WORLD WHERE THEIR REDEMPTION MAY BE FOUND ( WELL MAYBE A LITTLE PUSHY )!\n\nWISH YOU LUCK ON ALL OF YOUR PROBLEMS,  BREATHING THROUGH THE NIGHT SERIOUSLY HAS RE-STARTED MY WHOLE PERSONAL LIFE!\n\nHAVE A GOOD DAY.\n\n\nAPS
870040
I am 29 and have Epilepsy.  I have had it since i was 7yrs old.  Seizures were controlled with medication for many years but recently started up again.  I don't know of any support groups but you can get some really good advice from people in the forum rooms on the Epilepsy Organisation Website.  They will also send you a monthly newsletter.  I found it helpful!  It's something that you just have to get on with, it's a part of your life.  Good luck. xxx
94358
Here is a little selection.\nGoogle it to find others.\nGood Luck!
1175014
the best place to get that infomation is from organisations that help support disabled people and their carers - try asking your or their doctor about who to contact.
1088066
I have Spina Bifida. You already answered my question, now I'm answering yours. I have been looking for someone with Spina Bifida to meet and be friends with. My e-mail is rokrgy@yahoo.com if you want to e-mail me.
1176418
Here are some links to people who may be able to provide better answers to your question:\n\nhttp://cincinnati.babyzone.com/parentresources.asp?prid=401\n\nhttp://news.enquirer.com/apps/pbcs.dll/article?AID=/20060522/COL11/605220367/-1/back01\n\nhttp://cincinnati.reds.mlb.com/NASApp/mlb/cin/community/calendar.jsp (many of their events are geared to the disabled community)\n\nhttp://www.cincinnatichildrens.org/svc/alpha/c/special-needs/resources/indiana.htm\n\nhttp://www.greatoaks.com/pages/-4166-/\n\nhttp://www.ncaonline.org/ncpad/inclusion.shtml\n\nhttp://www.nyise.org/college.htm  These programs may need children to attend their various activities run by their students.\n\n\nHope these help you get started!  Also, these programs may be able to network you with other groups, too.
1173666
This site helps. It also has a support group.
1054893
This is the best I could find.\n\nSpondylitis support group \nChicago, Illinois\nScheduled to meet the first Saturday of every other month\nLocation:\nLoyola University Medical Center\nRusso Building, 1st floor room 1371\n1st Ave\nMaywood, Illinois\nMeeting times and location may vary. For additional information, email Michelle De Long, Chicago, Illinois's support group leader or by calling (773) 463-3256.\n\nAlso:\n\nChronic Pain\nChampaign\nChronic Pain Support Group * \n(2001,A,P/L) Offers help, hope and mutual support to those suffering from chronic pain (pain that lasts six months or longer). Meets 2nd Mon., 6-7:30 p.m., Stevick Center, 48 Main St., Champaign. \nContact: Cindy Childs 344-6534\nEmail: clchilds@uiuc.edu\n\nHope this helps.
223510
Is there like, a regional office listed in phone book?  or look in "support group listings" in newspaper; or call churches-- lots of times groups meet there.  If all else fails, call national office?\n\nkeep coming back, it works if you work it!
140850
Try the veterans with disabilities organization. That is great. I believe we should all the "ability" in disability. I salute you!
382208
http://www.post-polionetwork.org.au/news/ppn29.html   This association might help although it is in Australia.\n\nAny good reputable text book should give adquate information on the management of this disease.
611653
Your best bet is to Google using the following phrase, and the name of your state: apraxia support group\n\nOr try these links:\nhttp://www.shop-in-service.com/affiliated_groups.htm\nhttp://www.apraxia.ca/\nhttp://www.uniquelygifted.org/online_support_groups.htm\n\n\nAs far as apraxia is concerned, I really like the explanation given by this site:\nhttp://people.umass.edu/velleman/cas.html\n\nThese are good too:\nhttp://www.ninds.nih.gov/disorders/apraxia/apraxia.htm\nhttp://www.apraxia-kids.org/site/apps/nl/content.asp?c=chKMI0PIIsE&b=839037&ct=837215
929729
May want to seek out a forum specifically for obese wheelchair bound individuals. \n\nOr, maybe you can find some good info at a medical supplies store.
450314
If you haven't tried it already, ask your neurologist about IVIG.  I have truly seen it work miracles.  They might be hesitant to use it because it is VERY expensive, but I think it is worth a try.
103175
They have been linked for quit some time now. I research the condition just about every other day. This site ghas good info. http://www.autismtoday.com/index.asp
510465
That's a dang good question. I have never heard of support groups from the childs perspective before. If your local groups cannot put you in touch with any, you may have to form one yourself. Check out this website and talk to these people, they may have good advice for you.\n\nhttp://www.healthyplace.com/communities/bipolar/site/comm_calender.htm
140256
These are all helpful links for any parent of children with disabilites. A couple of them are Government links and one leads to SS page of benefits for these children. (and parents)\nHope this will help you. I know it will keep you busy searching and reading if it is what you want. Best wishes to you and your child. Doug