My life after EPM;
I’m rounding an anniversary. I’m sliding into five years post injury. I have to stop to think that through….has it really been five years? Almost.
So much has changed and so little has changed. I’m still adrift. I don’t know what life holds for me anymore. I have to wonder if if I’m sliding into home plate.
Don’t get me wrong. I haven’t given up. I will never give up. After a five year hiatus, I have started swimming again.
I have to say this is a HUGE deal. First, I was terrified, absolutely terrified. Immediately after my injury, I had started back to weightlifting. I found that I could not do it. My muscles would give out as I pushed myself to lift my normal weights, and slowly, I dropped to lower and lower weights with the same result: my muscles would give out.
I had never been a fast swimmer, but I had always been a good swimmer, and pre-CPM, I was able to swim lap after lap for over an hour at a time.
When I lost my ability to lift weights, I wondered if I had also lost my coordination. Would I fail at swimming as I had failed at lifting weights?
I couldn’t handle the thought, so I didn’t try.
About a week ago, I tried. It was momentous to me. In the first 25 yards, my quadriceps cramped. Then my biceps and triceps cramped. I couldn’t breathe, but I pushed myself to continue.
With every length of the pool, I pushed myself past the pain and fear, and I ended up succeeding.
It isn’t easy. I have to work at it each time I get in the water. I have to push past the pain, the fear….I have to work. And even after, I have finished, later in the day, my muscles will revolt, but my spirit has gained.
I will not let EPM claim the rest of my life. I will continue to push myself to the extremes and beyond the fear. I hope you do too.
Blessings and happiness.
Hyponatremia and Central Pontine Myelinolysis 
I (should I say enjoyed?) interestedly read a large portion of your story of the trials and tribulations of how you got and live with EPM but although mine differs from yours, never the less, I ended up with CPM from Hyponatremia. I wonder if you recovered damages for your injury. I have filed a suit for mid. Their expert witnesses say they acted within normal standard of care. Does this mean we can now expect inexpert care when we go to an emergency room? Just expect what you get (Even if it’s a life changing injury)? Them claiming a standard degree of medical care?
Is there any justice in the world?
From a 6 year veteran of CPM requiring 24 hr/day care for everything.
Dear Cathy,
I am so sorry you are a fellow CPM sufferer. First, try reading the part of my blog about how to treat hyponatremia. There are two types of hyponatremia: acute (happens over the course of hours) and chronic (happens over the course of days. These terms are used differently in other descriptions of illnesses and disease.
If you had acute hyponatremia then they would have needed to raise your sodium levels very quickly. If you had chronic, where your sodium dropped over the course of 24 hours to 72 hours, then they would have needed to raise your levels slowly to avoid CPM.
The first step that they should have found out is why you developed hyponatremia in the first place. Then, they would have needed to determine how long you had hyponatremia. They also should have done a CT scan to determine if you had brain stem swelling.
These things would have dictated a course of action in treatment.
I would contact Dr. Richard Sterns if it is not too late. He is an expert witness in the treatment of hyponatremia, and he testifies in the behalf of those with CPM. He would be able to review your medical records and determine if there was negligence in your treatment.
I hope that helps!
Please feel free to contact me with your story and your questions.
Hope you have relief!
Thanks for your prompt reply. Mine seems to have stemmed from long term Hyponatremia or I would be dead now. I’d been vomiting and diarrhea for at least 2 days and had a severe shoulder fracture. I got lost in the system and sodium levels weren’t even checked for 24 hours. Then after it started to rise they forgot to discontinue the sodium and was corrected to over corrected. I never knew the diagnosis. Pretty obvious later. CPM.
I cant walk unassisted (sometimes not at all) and fine motor control is shot (as well as other deficits). It has been almost 6 years for me and I have clearly gone past the time I can expect improvement. Btw, you never answered if you were compensated for your condition. My disability seems more severe physically. I hope you have continued improvement to 100%. Nice talking to someone who knows.
Best wishes.
Hi, Cathy!
Sorry, it has taken me so long to reply. Sadly, you can suffer from as bad of a brain injury from having your sodium levels go too high as too low.
So to explain better: low sodium levels causes your brain to swell, and if you develop acute hyponatremia (rapid drop in sodium), your brain stem can burst. This will kill you instantly.
If your sodium levels go too high, especially after they are too low, this causes your brain stem to dry out, and it kind of causes a beef jerky reaction. Your brain cells are pretty delicate, and this drying out, can cause your brain stem to fall apart- also causing death or severe injury.
Finally, the rapid fluctuation between too low and too high causes myelin death. That’s what causes CPM. It is the same kind of injury that occurs with carbon monoxide poisoning.
Now, is rehabilitation and improvement too late? I don’t know. I think, there are ways to rewire your brain, and I think that supporting your brain is the best approach–even 6 years down the line. Mostly because you don’t want to lose the function you have now, and as we age, your brain begins to suffer anyway. We are more at risk for rapid deterioration.
So, exercise–exercises that help work with coordination would be your best–water therapy. Yes, go ahead and ask your doctor to start water therapy, even now. I know you have balance issues and most likely coordination issues too, but if you can start bicycling–even if it is a stationary bike, they have found that helps with motor coordination.
You have to work what you have, or you will lose it.
Next, support your brain nutritionally…Udo’s oil or fish oils, vitamin B complex, and there are other supplements- let me know if you’re interested, and I will get you that information.
I did have a lawsuit. I will say, the legal system is f-d up, and you will never get what you deserve in compensation. I can’t say anything more about that, but don’t count on getting what you really deserve. 😦
I hope that helps!!
Please, stay in contact- I do have other CPM survivors that you can stay in contact with, if you want their information, I’d be happy to check with them to share your email, etc.
It’s always good to hear from others like us.
CPM diagnosis from neurologist I saw later.
I was also diagnosed with CPM back in 2005. I am the first African American to ever be diagnosed and live. Please contact me alysharhodes@gmail.com
Congratulations, your alive. I’m coming up on 6 years now. It’s just been a steady downhill journey for me, but you still get to enjoy your family and friends. Just keep on doing as much as you can. But remember to enjoy what you can now.
Cathy, can you tell us how things have changed? Have you gone through more physical, occupational, or cognitive therapy? Have you tried any alternative medicines? What kind of problems are you facing?
Knowing more about you- I might be able to give you info on how to cope, and you can help us with doctors who don’t understand that this is a progressive disease not a limited injury.
Thank you for your help!
I had extensive physical therapy. But I must say that the normal time of treatment is too short. Both doctors and insurance companies require you to “show improvement ” to authorize further treatment. They don’t understand the need to stay active. Mine has given up on me since I’m not “making improvements ” anymore.
Thanks
Hi, Cathy!
I had the same problem. That said, they will reauthorize therapy every year or two. They can also request alternate forms of therapy in between. For instance, if you do standard therapy first, the next time they can request water therapy.
I’ve had a lot of people with CPM tell me that they have had significant improvements with daily exercise. For instance, Todd, he rides bicycles. They have found that riding a bicycle gives more relief for Parkinsonism….tremors, jerks, spasms, than pharmaceutical treatments.
Walking and swimming are also beneficial, but biking would be awesome, if possible. Even if it is just a stationary bike, it will give you benefits.
I hope that helps- please elaborate more on issues that you have currently. Your experience can really help us all.
Thanks!
Tell you how things have changed, you say? How about every way you can imagine. Nothing is the same. I went from being a functioning human to something less. Wholly dependent on someone’s help to do ordinary things, and some are just beyond me even with help. If I stop and think about it, I get very angry, and that does no good. You tell me that I wouldn’t count on being compensated for my loss of an ordinary life, so I just do the best I can. I broke my shoulder which was never repaired properly, so I can’t do things requiring two hands. But I can peck out emails with one hand.
Hi, Cathy.
I know what you mean. It is a bitter pill to swallow. On one hand, you’re alive. On the other, you have lost everything you had before the injury.
And if you’re like me, right now, you’re drifting through life not knowing what to do next. What now?
I asked that question to my doctors, to my family, to my friends. What now?
If you’re like me, you live in the moment of now. I don’t have the ability to figure out what to do next month or next year. On some days, it’s hard to figure out what to do today.
There was a movie that Julianne Moore played in—(not sure if that’s how you spell her name)–she plays a woman with Alzheimer’s. I just cried while watching it. It was refreshing and devastating to watch it–because it was and is me-those feelings, those occurrences.
The only thing I can offer is that you aren’t alone. If you want contact information for others like us, I can give it to you. It helps to know you aren’t the only one experiencing these things.
It also helps because, if you’re like me, meeting with retarded neurologists is depressing because they don’t believe what they can’t see.
Anyway, talking to people who have our injury and can describe their experiences is one of the biggest and most important things we can do with our lives post injury.
I have to believe that eventually neurologists will catch up with what we live through, and they will want to understand why we experience what we do.
Anyway, I would pursue a lawsuit, but you must not let it consume you because you will never be compensated for what you lost. You may be compensated something, but it will never be what you deserve, and you will deal with dozens of people questioning your honesty and integrity. Most of them if they agree that there are shortcomings will tell you it’s because you are nuts rather than injured.
It’s a bitter process. You have to decide if it is worth it to you to go through it.
If you give more of your symptoms, I might be able to give you information that has worked for me and for others on helping you improve your symptoms.
Have a great night!
Hi, Cathy. I just wanted to let you know, if you want to friend me on FB (or anyone for that matter), I can connect you to others with CPM/EPM.
You aren’t alone in this. I just started talking with someone new who has CPM today.
Sadly, this injury keeps happening to people like you and me. We have to stick together.
You can find me under Sarah Martinek from Dayton Ohio
My wife had been drinking a lot of fluids and one day after she was sick and with diare, she started making strange noices and i couldnt make eye contact with her, and we took her to hospital and they told us she had hyponatremia 104 this all happened on sunday 10th may 2015, when we came to visit her monday, we could only speak to her for a short time, and when we got there tuesday she was sitting in bed smiling and asking what happened, and was talking completly normal, and she was eating sandwiches drinking soup and juice, but when we got there wednesday she was just lying there trying to talk she looked very bad, and thursday there was no contact. After 3 weeks we had to help her out of bed and try and get her to walk she could not talk or swallow, she left hosital a week later and was moved to a syke home and she was very violent and would smash things, she had to be fed through the stomach. When we got the hospital journal we seen they had given her “21mmol sodium in the first 24hrs” and it looks like they tried to over correct her sodium blood levels as well.
Anyway today she can swallow very well, and she can walk, run, vacuum, clean, she goes to the toilett, Showers, nearly everything she can do. BUT she cannot communicate, i mean speak or type she just says de de de de de and she can be a bit angry and childish, it would be imposible for her to write on here. i know its CPM the way it came after 4-5 days. Could anyone tell me if this is permanant or will she improve, i know our lives will never be the same.
thank you for reading, and i wish you all a speedy recovery
Robert…
Hi, Robert!
Your wife’s case is complicated. You see, if she was drinking too much water and her sodium levels dropped that significantly over a period of two hours, then she would have been at risk for brainstem herniation.
Now, I would be shocked if it dropped that rapidly in such a short period of time. I have a feeling, if she was drinking lots of fluids over the course of one or more day, that sodium level makes sense, and her developing CPM due to a rapid rise in her levels also makes sense.
If she truly did develop such a dramatic hyponatremia so quickly, then the doctors did the right thing by raising her levels so quickly.
If her hyponatremia developed in just a few hours, it’s called acute hyponatremia, and that type is at the highest risk of having the brainstem burst.
Now, on to her current condition. Everything you have described happens with CPM.
Her speech can improve. Though, I would never expect her to be able to communicate normally. The most important thing to remember
Is that even though you can’t communicate with her like she normally did–her intelligence would not be dramatically impacted.
Most people don’t understand that you still have the same feelings, frustrations, etc, but now, you can not say what you want to say.
You can’t describe how much something hurts. Or how sad you are. Just imagine losing every ability to express yourself.
It is torture.
So, what do you do?
If she has use of her hands, learn sign language. Right now, use basic forms to communicate—blinking your eyes—taping. Get basic word cards that she can use to spell out messages. So for instance, have a card for yes and no. And ask her yes or no questions.
I would highly recommend watching the diving bell and the butterfly together.
How do you improve her speech? Speech therapy, but you would want to work with someone who specializes in working with people who have aphasia caused by brain injury.
There are actual medical centers that have intensive aphasia treatment. Literally, you stay on that property for weeks while they work with you.
The biting and temper tantrums. Well, here’s the thing. That could be her signaling her frustration. It could also be due to the area of her brain impacted.
People with CPM do experience mood swings. Imagine losing every ounce of yourself with full cognitive awareness, and you can not express even your basic needs…..it is the most insane forms of torture. People no longer act like you can understand or feel. They talk about you in third person, and all you can do is listen.
So, I’m sure you can see where you might start to throw fits.
You will want to include her conversations–talk to her, not about her.
Hopefully, if you can open any doors of communication the behaviors that you see will stop.
But, the other reality is that the part of
Her brain that regulates self control could be injured. I experienced that in significant ways during the first 18-24 months. Heck, I still have that problem. I tend to go with the flow which can be dangerous. I have a very serious impulse control problem now.
Anyway, you can try alternative medicines too. You will find, if you haven’t already, that doctors are f-ing clueless when it comes to this injury. So, you reach for any treatment possible. In this case, she needs brain support. Have her take Udo’s oil and fish oil.
Have her take vitamin B complex, and l-glutamine.
I will look into more options for her, if you like.
I hope that helps. You are not alone. If you friend me on FB, I can hook you up with others who have CPM, and also spouses of those who are dealing with CPM.
Stay strong!
Sarah
Sorry about the dates, my wife was drinking wine wednesday evening 06-05-15, the next day she started drinking alcohol fri beer and she was sick that evening, and friday the 8th she was sick and with diare, over thursday, friday and saturday she drank nearly 20 ltr’s alcohol beer, and sunday the day she went to hospital she was drinking water, i dont know how much. Before this Irina could speak English, Norwegian, Russian, Swedish, and get by in Spanish and German, she is 52yo. Thankyou for your quick response, we have had very little help before, we live in Norway and there is a case going against the doctors for what they did, i think she had hyponatremia in 4 days.
Hi, Robert.
Good luck with your case. I will tell you what I told Cathy. If you win anything, it won’t ever be enough to compensate you for your loss.
In the States, we have to prove we are injured, and beyond a reasonable doubt that the doctor’s error caused it.
Your weakness in your case will be that your wife was drinking before the hyponatremia.
It has been shown that those who drink a large amount of alcohol can develop CPM without a rapid correction of their sodium.
From what I have seen and know from other alcoholics that have developed CPM, there is still a rapid correction of sodium, and I think, ultimately, that’s what causes the CPM. But you will have to prove it.
I’m just giving you a head’s up. The best thing to hope and strive for is getting her better. So, hopefully, those therapies will be helpful.
If you can get your insurance to cover it, you can also try immunoglobulin, plasmapheresis,TRH therapy,
I hope that helps!
Im sorry my English let me down again, Irina was drinking Alcoholfree beer and she had 0% alcohol in her blood when came to the hospital. Irina has been drinking ARGI+, cod liver oil, b6 and b12 and eats a lot of omega3 as we live near the sea here, she also goes long walks in the forest with us. Dont you think it was strange she was talking and eating on her 3rd day in hospital, and then was sick, CPM comes 4 to 5 days after the treatment. Irina says yes and no but only when we say it to her, im not sure she knows what it means.
Best regards Robert..
Sorry Robert, part of the brain injury for me is that I forget things if I don’t attend to them right off, and I forgot about your comment.
I’m glad she hadn’t been drinking alcohol. If she was consuming a large amount of fluids, that would cause hyponatremia. Usually, it causes acute hyponatremia but that’s because people consume such a large quantity of fluid in such a short period of time, usually athletes.
So, is she taking the fish oil and omega 3 now? Or was that before now? Did they do a MRI then?
CPM can take a few days to develop. It can take up to 7. And it is based on the date of rapid correction, usually. And some of the early signs can be missed. I started having issues thinking of words before I really began to notice a problem. That first sign was very subtle, and it happened about day five for me. My doctors in the ICU expected it to happen right away. They told me that I could go commatose in a matter of hours after the treatment. None of them told me that it could take days or even a week after the correction.
I hope that helps!
It’s true that you have a breif period of no symptoms but you rapidly develop symptoms of CPM.
Hi, My wife always eats omega3 but has taken fish oil since she was sick, Irina can not comunicate, and thats what i dont understand, it seems everyone else on here can comunicate and understand, but they have some physical problems. Irina does not understand when you talk to her, and she cannot watch a film now, she does understand some signals, and she can play some computer games. She is very good physically just a bit wobbly when starting to ride a bike, but once she gets going its not that easy to keep up with her. She has started to say a few words if she don’t forget them, but the big problem is she dont understand, if you ask her to do something she does’nt do it, she remembers most of our pictures from holiday, but to me it does’nt seem like its my wife, this has really broken our lifes and the childrens.
Robert..
Hi, Robert.
I understand, and I wish I could say that speech isn’t impacted by the injury, but it is.
I struggle greatly with communicating, and it’s extremely frustrating–and as you’ve eluded, there’s varying degrees of severity, but everyone I know with CPM struggles greatly with short term memory, word recall, categorizing, aphasia, stutters, slurred speech, etc.
It is primarily a motor issue. I would highly recommend watching the Butterfly and the Diving Bell. You will understand that most of us are trapped in a broken body with limited ability to communicate what we want to say- you need to understand that one of the most horrific things for your wife is that she might be absolutely FULLY cognizant of everything going on and absolutely NO way to communicate it.
Imagine having an itch on your nose that you can’t scratch and no way to scratch it, or have people talk about you as if you aren’t there, and no way to get them to notice you.
Some people turn into themself when this happens. I mean, they shut off the world around them and get lost in their own thoughts because it is easier to tune out than to deal with the mind numbing frustrations of not having the ability to say what you want to say.
You will want to research aphasia centers to see if there is a good rehabilitation center in your area.
Also keep in mind that TRYING to communicate is extremely tiring and frustrating, and sometimes people stop trying.
Try to find resources that will make it easier for her.
Stick to yes or no questions.
Eye function tends to be one of the only movements not impacted by injury, so blinking might be an option.
There are mechanical devices that can be used that track eye movements that allow a person to select letters on a screen with their eyes that allows them to talk through a computer…..Stephen Hawking uses one, but the technology is available to the general population.
I hope that helps a bit.
Hello. I am looking for your posts that include CPM/EPM physician referrals. My daughter was diagnosed yesterday with EPM. We will appreciate all doctor referrals.
Susan Thielke
susanthielke@gmail.com
Hi, there.
I wish I had a master list of doctors that are familiar with CPM/EPM. It’s such a rare condition that it is hard to find anyone who has expertise in it.
That said, Dr. Noor Pirzada and Dr. Ehlmer at the University of Toledo medical center is good.
There are two other doctors that I know that are good with CPM/EPM, but they are in MA. And I think NY.
I don’t know if you want to or can travel.
I hope that helps.
Thank you for answering my inquiry. I appreciate the referral to Dr Pirzada and Ehlmer. We are in Augusta, GA, so travel will be necessary. I would appreciate the names of the two other doctors you mentioned in MA and NY. I found Dr. Robert Sterns noted on one of your blogs; he is in Rochester, NY. Is this the NY physician you might be referring to? Will appreciate all you can refer us to. Going to turn over every rock to find the docs who know about CPM/EPM. Seems like a lot of the abstracts I have found through NCBI or Springer are written by doctors outside of the U.S., which is a very interesting point. For a country that is supposed to have the best medicine in the world, why are most of the doctors writing about Hyponatremia and CPM/EPM in Taiwan, Austria and France; just to note a few?
Hi- there.
Dr. John McDonald with Kreiger Kennedy.
I don’t know if they see pediatric patients or adult patients or both. It’s been awhile since I reached out to them.
But, here’s the thing, I haven’t found any doctor who is an expert at CPM/EPM, and not to sound conceited, but not one of them know as much as I do in regards to the injury.
It is hard to find an expert familiar with CPM/EPM because most people who get it die, and only about 2000 people get it each year in the US.
It’s just not worth their time to research it.
The injury is similar to carbon monoxide poisoning and multiple sclerosis. Trying to find a doctor who is skilled in those fields might be easier.
With more information, I might be able to assist more easily. How old is your daughter? Is she still in a locked in state? Have you tried any of the treatments- like immunoglobulins or plasmapharesis?
I hope that helps- I’m still looking for the name for the doc in MA, and will get back with you soon.