Anyone with Central Pontine Myelinolysis
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Hi anyone out there have any information on central pontine myelinolysis , my 26yr old son has been diagnosed with this condition. He has been in hospital for 6 weeks and spent the last 4 weeks in intensive care, he went into hospital on Christmas eve after having seizures to do with alcohol withdrawal the first couple of days he was doing fine then things started to go wrong. He started to loose his balance he started slurring his speech and was getting very confused. He then lost his ability to swallow then started to slip into a coma at which point intensive care induced him into a coma and we were told not to expect him to survive. A week later he started to come round and could breath for himself but could only use his eyes,3 weeks later and he can communicate by blinking his eyes can squeeze my hand with both hands can wiggle his toes and can understand everything we say to him. We know we have a long way to go and don't know what the long term recovery is but would be grateful for any info from anyone who has come through this condition.
4 likes, 280 replies
kevin45024 elaine04862
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I have seen a few different nerologists and there is no trearment other than one doctor had heard of use of an alshimers drug being tried, that is how I found this looking for that site. I have heard of vastly different out comes.
I just what to say that things did improve slowly, but never returned completely or addiquitly to my likeing, but life is pretty good!
Balence remains an issue, but is more than just ok. Mental function can vary,but cann't determine what makes better at times.
Socially I am akward (was bartender for 25 yrs.) so this is something still try to adjust to as this is not me. All and all you need to set a parameter to aspire towards and go for it. The sitting and woe is me will do nothing to help in fact just bring you down farther. The best thing I can say is look what you have and not what don't and make it special along with the people you hold close! And remember to smile!!
elaine04862 kevin45024
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joe64679 elaine04862
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http://www.npr.org/sections/health-shots/2015/02/02/381937503/fight-back-against-parkinsons-exercise-may-be-the-best-therapy
http://www.medicalnewstoday.com/articles/253197.php
elaine04862 joe64679
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hope this helps
joe64679 elaine04862
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joe64679 elaine04862
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christina87896 joe64679
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kevin45024 elaine04862
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I like you to know I had to look up spelling on like 8 words and check my writing 5 times. Not in anyway the same, but trying to work it !Wishing for you and him the best of outcomes!
michelle0829 elaine04862
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beth97920 michelle0829
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michelle0829 beth97920
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beth97920 michelle0829
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michelle0829 beth97920
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joe64679 michelle0829
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beth97920 joe64679
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christina87896 beth97920
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beth97920 christina87896
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joe64679 beth97920
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michelle0829
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beth97920 michelle0829
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