Anyone with Central Pontine Myelinolysis

Hi Pamela,

As Joe mentioned, your neice could be experiencing "locked in syndrome" at the moment. It's almost like being in a paralized state but often the patient can hear what is going on around them but cannot respond, either verbally or physically. It's very helpful to talk to her and encourage her and of course, it's best not to say anything in front of her that may frighten her as she cannot respond to it and she is then left there worrying. Perhaps just talk to her about her daughter, tell her how she is doing, that she misses her mum...that kind of thing. Please update us when you can as to how she is responding....take care and best wishes..

Kelly

http://www.ncbi.nlm.nih.gov/pubmed?term=10460448%20

my name is frank and i have cpm.would love to talk to you about it.

Hello Frank!  How are you?

hello,\frank here. i'm 57, live in mississippi. i have a bunch if issues, but they are manageable. how long did your son stay in hospital. i stayed in 9 months. got cpm in 2004. i have worked out 2 or 3 hours a day for 7 years. can't control anything, but can manage them. i like to hear what other cpm survivors are going thru...

Hello Frank. I went in the hospital in November of 2012 and went to TIRR rehab in January of 22013 and released in March and started out patient rehab. I still have some balance issues but continue to work on it. I am now in OT and speech and had Botox 3 times in left arm/hand and some facial muscles to relax contractors. I can now control bowel and bladder. I am 41 and live in Houston, Texas  No lung problems but have to be careful swallowing 

Elaine, I also have tremors in my hands (much better with working out) but I ordered a universal cup lid from amazon for my coffee cup.  It's called Greenpaxx and works great!  {\rtf1\ansi\ansicpg1252

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Hello Kieran. Good to hear you are doing better. I heard you can run. I have difficulty with that and I used to run 5 miles about 5 times a week. Something I really miss.

Hi Elaine, I developed Central Pontine Myelinolysis, or the PONZ as my doctors call it, back on Jan 18, 2011 after a liver transplant.  I know what your going through and my heart goes out to you.  I was in a coma as well and in the ICU for 47 days.  My wife and I didn't know anything about it then but learned quickly once they released me from the ICU into the Physical Therapy ward.  I had to learn how to pretty much everything all over.  All my senses were scrambled, I couldn't see, hear, walk, talk (because I was trached) when they took the trach out and the wound healed up I had to even learn how to eat again.  I'm a former Marine and not having control of my body was a nightmare.  But with the help of a very patient and loving wife, and an outstanding team of doctors I made a partial recovery.  I have to wear hearing aids now, my balance is terrible, I can walk but not run, I've lost feeling in some areas of my body, and I'm forgetfull, especially in the short term and my left hand shakes continually.  I hate to tell you but I don't believe there is anything that can be done for your son.  The eye shifting thing happens to about 10% of the people who get the PONZ.  If God wills it he will come out of it.  When we found out about that disorder I told my wife that if that had been me I hope that she would forbid them from keeping me alive with machines.  That's no way for anyone to live.  And what is waiting for him on the other side is incredibly wonderful.  You see, while they were operating on me I died.  Before they brought me back I got a little peak at heaven.  I'll never forget the feeling of peace and tranquility that I felt for those few moments.  I wish you all the best. Hugs, David.

Hi again Elaine,  I just read some of your other posts, and all I can say is THAT'S GREAT!!!!!!!!!!!  Glad everything is working out.  God must have been listening to you.

Hugs Dave.