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central pontine myelinolysis

bitsofglass
0 Recommendations

I don't have this disease, but my 88 year old father is currently being tested for this. He was driving and his mind was sharp until April 13 when he was hospitalized for low sodium. When he came home (he lives with me and my husband) I began to notice strange behavior. He would constantly ask me what he needed to do next--like he was lost, or his brain was stuck and he really could not figure out simple tasks. He had his first appointment with a neurologist on 05/18/2008. He had a CAT scan which did not reveal any signs of a stroke. He can have an MRI because he has a pacemaker. The doc was pretty certain he has cpm but did not discuss it with us at that time, He had dad come in for an EEG this past monday and he has another appointment on 06/22/09 to discuss the findings and prognosis. Frankly, I am scared. I have done some research and it does not look good. Can anyone help me?

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164 replies

shilay

Hi Everyone,

I am so glad to find this forum. My father was admitted in the hospital on 29/10/09 for low sodium (95) level and was in ICU for couple of days. As doctors corrected his sodium level rapidly, he was discharged on the 6/10/09 to be fit to go home. He also had an arm injury that turned into infection during this time. However, the main issue started on the 08/10/09 when his sodium level reached 140 and we started seeing signs of neurological problems. After re-admitting him in the hospital for couple of days and fighting with doctors we realized he wasn't getting correct diagonsis.

We moved the hospital and new neurologist diagonised dad with CPM and EPM. He had tremors, slurriness, muscle spasms, blackness in front of his eyes and could walk slowly. He had stiffness in the body. After admitting him on 10/10/09, his doctor straightaway started antibiotics to control the infection and started giving him medicine used for Parkinson.
His infection cured completely and he showed improvement and got discharged on 14/10/09.

I have returned to the UK while my dad is in India and my family is taking care of him at the moment. After reading about CPM, I thank god for dad's life. However, I have questions as articles on internet scare me.

1. Can this condition deteroriate?
2. He is able to walk slowly and go for 15-20 min walk in the morning and evening in supervision. He says he feel better while walking or sitting.
3. He is bit confused and complain about blackness in front of his eyes.
4. He complain about loss of appetite.
5. He has become stubborn and look lost. However, if some visitor comes he is alert and try to talk.
6. He has become extremely emotional and cries often.

He is a civil engineer and was handling big projects, please advise on CPM improvement. It is so hard to stay far and I want to know what support can I provide to my family and my dad at this stage. God bless for all the support.

thanks

UrsaBear

amitava11 Apr 2009 05:38 pm
(keep in mind that there is now technology to produce stem cells without using an embryo. It uses skin cells in place of embryonic stem cells)
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
New Embryonic stem cell research shows positive signals for future Multiple Sclerosis treatment.
A recent study conducted by US researchers (on Thursday), help embryonic stem cell to grow critical nervous system cell oligodendrocytes. Scientists believed that in future this new nerve cells generated from embryonic stem cells will be able to repair damaged nerves of multiple sclerosis.


Oligodendrocytes produce the myelin sheath that surrounds nerve fibers like wire insulation.

According to experts, the findings represent an important step toward embryonic stem cell-based therapies in general, and also for cell-based therapies for myelination disorders such as MS in particular.

Researchers have definitely layed the groundwork for being able to apply these cells in terms of a therapeutic application.

But as Dr. Su-Chun Zhang of the University of Wisconsin, Madison, who has been studying oligodendrocytes and myelination for nearly a quarter-century, tried to apply the culture conditions painstakingly worked out in rodents to human cells, oligodendrocytes failed to emerge, so experts don’t like to relay on assumptions as human cells not always behave like mouse cells. But they agreed that at least the findings would indeed lead to a laboratory model of the illness’ pathology.

The research was published in the May issue of the journal Development

UrsaBear

I was pondering late last night how much this site has helped me since I signed on in early June. After a rough start in the beginning (long story), I feel I've became better with online communications, chosing the proper words and phrases that will not insult or hurt somebody's feelings, and this site has even improved my memory. The best part of all is I have 'met' some wonderful people who are not afraid to tell me what they think of me or my condition. For this I am grateful.

WhataBreeze

Good Morning All...
Yesterday, after a communication with who carries the responsibility of reason causing both my reason as well as almost an 18 month delay of diagnosis in regard to what has made a complete change in my life by a single phone call, "That call was actually answered by a very kind lady but was asked so politely to hold as I would be switched to the Assistant to the Chancellor. (I'm moving up quickly now, especially after seven years of ________.)

I must admit, my thought process that normally runs a bit slowly may have shifted a gear or two as I went through the normal "Holding Pattern," to my turn. Please note this very similar call was made last year about this time of year but I truly was not thinking of that point as last year after just a few minutes on the phone I was made to feel everything was my own fault like I even performed the surgery w/ lights out and my eyes covered. No I must excuse myself as the main point or reason I was not allowed to speak to this gentleman of such honor and prestige was the fact that I had a law firm representing me in a few cases that had them listed in the defense column.

That appeared last year as the ultimate no no if I had any thoughts of disgussing anything with anyone with any connection to the defense. So I was told by this same individual who I was about to chat with that I should't even bother if there were any suits open because the chancellor will not speak with me. (don't forget his honor and prestige) Before his entrance on the line I'll tell you my friends and kind community who truly cares. At present, I have no one representing me so if someone's word means anything we'll soon find out.

Just by tone of voice, which I use to have, it was quite easy to tell something was up. After a few minutes of yearly small talk, the subject went into the reason I called for which wasn't hard to figure. Without setting myself up for most consuming citizens disbelief I hope you understand that I come from the old theory that just a minimal few can make it bad for many. I've elected to call it my 80/20 and 20/80 theory's.

Bottom Line: Yesterday, the top Hospital Reports came out. I was told in not to many terms that the Chancellor had no plans in his schedule to talk with me. G-d Bless....

Franky and Breeze

Ps. As you all know, I'm a man of my word as you are more than welcome to ask the 100's of those I've stepped up immediately to help after they to just as when you acquired Central Pontine Myelinolysis or CPM if you wish.

bitsofglass

to prjj
I understand exactly what you are talking about. I can explain something to my dad and he will ask me for an explination a few minutes later. He also appears to "tune me out" at times when I am trying to explain things. I have found that if he tries to process to much info at a time, he gets more confused. I do make notes for dad and it helps. He makes so much more progress when he is not stressed. He just came home from the hospital due to a low hemiglobin, 6. They gave him 5 units of blood and did all kinds of test and now it is up to 11. They determined that his blood loss came from having the foley cath in on his last visit to hospital in April (when he got CPM). The cath irritated his bladder and with him taking blood thinner, it ruptured a blood vessel in the bladder and caused the bleeding. He is 89, so I know his body is "wearing out"., but today, he is good. I can see improvement on a daily basis now, but the short term memory is the worst sign of cpm. Just keep your dad's spirits up and encourage him everyday. He will get bettera

prjj

Thank you for the website information. I do have a question for anyone wanting to respond. My Dad is doing much better, but still having trouble with the short term memory. We realize that this is quite normal but we are wanting suggestions on how we can help him get the information to stick. For instance, he has two keys to their front door and he could not remember which one was for which lock. They are both marked. It is as you give him instructions and he either does not remember them or is not paying attention to what we tell him. Just any tips or hints would be appreciated. Thanks!

djmtard

www.thecpmsociety.com enjoy:)

bitsofglass

please provide me a link to the new website. Dad is doing better--they gave him three units of blood. When I try to explain to the nurses about cpm, they look at me like I have a third head growing up out of my shoulders and just smile and say "on yes"--old people do suffer from "summer downers". I say no, he does not have sun downers, but then just tell them to "look cpm up".

UrsaBear

Hi Breeze
Apparently some people think that Central Pontine Myelinolysis is a very common and well known disorder. I'm not going to name names. You may want to explain to them in private your own experiences.

WhataBreeze

Add On From Previous Above........

"SORRY about all the misspelling, today is 2H day meaning Hot and Humid."

As I sit here involved in my "Tremor Type," it was March 2005 and to make it brief, (which in this case was a true sin) as my father was being treated like a stuffed doll in a training session at what was advertised to be the "Finest," home for the elderly in the St. Louis area. I'd seen enough. He was placed on "Peritoneal Dyalisis for Dummies," as this was about to become the 3rd or 4th emergency run to the hospital in a very short period of time.

It's pretty sad when I have to apologize to you, my kind caring listener for what goes on everyday and the "Only way," you know a thing is by one ratting out the other which happens all the time. I hate to say what I'm about to but............. (Could this be the reason it sure seems that you see more and more creamations being offered.

We, the survivors of CPM, Central Pontine Myelinolysis have offered you just a trickling of what CPM is all about. Kind of unbelievable that the "World of Medicine still knows very little or is acting like very little is known in regard to the CPM network. If you believe in the 80/20 theory, the next time your at the ER, start asking if anyone is familiar with CPM. Chances are you may be in for a rude awakining.

OK, drummer man from Springfield, Mo., we are getting ready to go on the road my dear friend. God Bless you as the rythm begins to touch all of our hearts as the reality sends the message to all. Their game continues but as long as we know their game "Truth will always sound out my dear friend.

In closing I wish you were here a few weeks ago when the two bright shining lights for the entire worlds CPM acquisitions turned out to become witnesses for the defense! Keep on Beating ...... G-d Bless...

Franky w/ a special woof & Breeze... (Special prayer went out for you to bang em for M.J.)

WhataBreeze

We all have our own situations that for one reason or another shifts our personal thought process many directions at similar periods, "No pun intended especially on this side." (~8 Without going into any details, I will stoking the coal for the next 6 months at a minimum. Besides my life as I feel it's an oppertune moment to bring up since the current holding pattern I'm at is, a wonderful position that I feel my comfort zone again.

People have many comments about me but just getting down to the "Skinny," I've been tilling soil, planting seeds and watering when needed! On my 65th birthday an announcement will be made in regard to all future plans whether my plan is to hand a book over to the world or simply stop and smell the roses.

I really miss my Father even knowing how ill he was without his smiling little face and his personal ways of making a sad fce into a happy one!!! (((~8 G-d and my Father had a special way of using their "Team Play." The year of 2005 was very unique in many a way. Back in a few to add the balance. G-d Bless...

Franky and Breeze (-;

UrsaBear

Hey Bitsofglass
Sorry to hear about your dad. He is so lucky to have you. Now you know more about CPM and what to look for in other areas of his health.
I know when I am stressed it is futile to try anything new, and I think that goes for most people.
So I took D's advice and asked my doc for a TENS device for chronic pain. I've been busy with that and we are starting a new website--or I guess I should say it is D's brain child--for a site dedicated to CPM survivors and their loved ones.
It is going to be both educating and entertaining.
So I hope you hang in there and take care of yourselves
......Rita

bitsofglass

My dad went into the hospital today due to his hemiglobin being 6--that is low I am told. I just hope they don't screw him up anymore. His sodium level is fine as is other blood work (other than the hemiglobin). We have not made much progress over the past few days, but I have learned that when his brain is stressed, he does not improve. I am trying to keep him calm and destressed. Where is everybody? I thought for sure there would be more posting since my last. I hope all is well

UrsaBear

Hey BitsofGlass
No worries. I am not going anywhere! Your father is a great example of steady recovery. It is wonderful that he continues to improve.
To those who are not familiar with my case, here is a little rundown.
My CPM happened on October 5, 2003 and mine was a severe case, but since my insurance was the bare minimum, I really had to take matters into my own hands. You could say my mind and body were messed up, so I forced myself to work out and also enrolled in a community college. I knew if I didn't get off my ass, I would end of being in a wheelchair the rest of my life. I knew that if i didn't challenge my mind daily, my brain would turn to mush.
These days, when first meeting me, people have no idea what happened. When I do speak they think it is just a foreign accent. I do use a portable communication device when necessary, but that isn't every day. I walk just fine now, where at first I could not even stand on my own. I have little techniques that make things easier and I know my limitations, which even now are less and less.
I suppose what I am saying is we cannot give up, no matter how bleak it looks. If we lived through the initial shock to our body and brain, we do get better.
Hey, we are alive and have cheated death, so score one more for CPM survivors!!

bitsofglass

to cpmvictim
I am so happy to hear that your wife has made such a wonderful recovery. My 89 year old father has CPM. He was dignosed April 2009. He lives with me and my husband and the going has been tough. We can see some progress and are thankful that he is alive. It seems that he has a "mild" case--if there is such a thing. cpm is an ugly animal that it has robbed by father of having his brain be in top shape for his last days. He does not have a lot of physical effects--his short term memory is greatly affected and his OCD is more pronounced, but all in all, he is improving. I know it had to be difficut for you caring for her. I get so angry, then sad, then frustrated. Does she have any lasting effects? What helped you get through her recovery.
to D and userbear---please don't go away. I don't post as often as you two, but I do read all the post and it helps.

UrsaBear

Hello cpmvictim
Welcome to our "wild and wooly" site. Never a dull moment!
Now your wife is a success story!! Thank God for that, especially since she is back to work!!
Does she have many lasting effects from the CPM?

cpmvictim

djmtard,
Please don't leave. You like everyone else her has a part in helping other cpm victims through support

cpmvictim

Wow I just discoverd this support group. My wife was diagnosed with CPM in Jan 08. She was on life support as long as she could be. She was scheduled to a have a tracheotomy the next day. Which would have had her lose her speach if she survived CPM. I was in the room with her when a man walked in and asked for my wife. To which I replied who are you? He then explained he was a pastor and some had called his church and asked him to stop by. He said is there any that he could do? I said that he could say a prayer. That night the docter came in and turned off the life support to show us that she would not be able to breath on her own. Thats when the miracle happened and she started breathing on her own. She went through along process of recovery. She is at work right now which she did have a hard time finding a job.
She will be glad to find that I found this group. God bless all of you.

djmtard

Ok, I lied this will be my last post....Breeze, you talk about being positive all the time....and just today you were spewing that you don't "show boat"....however I have repeatedly asked about the cpm awareness foundation, asked about HELPING build a web site, come up with a logo etc. yet no response from you.... I think YOU don't want any help...I think you enjoy being "the SOLE voice" of CPM....The reason I believe this is that you talk about, in fact being the "sole voice" of cpm....What about the rest of us...hmmmmmmmmmmmm not as much fun for you when your NOT the only voice???? I have a voice, ursabear has a voice, and I"m sure there are many others out there who have voices who WANT to be heard!!!!!! I first came to this site looking for someone like me, who lives with cpm daily....instead I found several:) Who would have believed it!! You have made me VERY uncomfortable here...Telling me that "someone is being watched" well, I checked...as of now NO ONE is being watched!!! You also told me to be carefull what I say and who I say it to. Why?? I have done absolutely nothing wrong....All I wanted was a little support in dealing with this horrible disease!! Instead I get grief from YOU!!! All those others that are reading this, I am sorry to turn this into a shouting match! I wish you only the best and hopefully breeze won't harrass you like he did me:)D

djmtard

I am not upset that he hasn't contacted me....I am just curious if he was planning to contact myself or ursabear about how his father is doing and how he is doing...I am not being negative and not "showboating"....You are the one who came on and said this young man was planning to contact myself or ursabear and/or get on this post....I haven't heard from him and was just wondering what was said or if you have heard from him again........OMG, I can't believe this has turned into a competition....This will be my last post here....Good luck to all:) D

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