Central Pontine Myelinolysis
 

Hi everyone. This is my first post.

I'm posting on here because I'm looking for some advice and maybe just some hope. I'll try not to go too long, but I'll start at the beginning...

Back in late 2010, my mother-inlaw was diagnosed with CPM. I'm not exactly sure, but I think she was around 50 when it happened and up until the diagnosis, she lived a very healthy "normal" life. We're not 100% sure what caused her hyponatremia, but we're thinking it was a combination of a severe stomach flu plus poorly monitored use of blood pressure medication. Of course, what really caused the CPM was when we took her to the ER... the low sodium reported in her blood work was not properly identified, and a normal saline drip was given to her in the ER, of course causing her sodium levels to spike.

Immediately after that, it was almost as if she had locked-in syndrome... not able to move very much (barely able to move a finger or hand), or talk, or eat. It was very frightening; she would just look at us as we talked to her... the doctors said that we were lucky that she survived at all (probably due to her good health prior to the condition), but that the prognosis was not very good. After many many months of inpatient care, she actually began to make progress towards "recovery"... I put that in quotes because at that point, we didn't know what recovery meant. We just knew that she was making some progress.

The major milestones were walking and talking, although those things were laborious for her. But she was able to do those things within the first year. One major thing to note is that this happened while traveling to New Zealand... we're from the USA, so after that first year, we decided to take mom home. We thought that once we got her home, the great medical care in the US would drive even better results, but not so much...

After coming home, mom actually made some progress towards swallowing... we quickly realized that swallowing was going to be the single biggest thing for us. She was able to swallow pureed foods and small pills. This probably started a few months after arriving home... but now almost at the year 3 anniversary, she's regressed some. She's no longer swallowing any foods, and having a lot of trouble swallowing her saliva.

Her doctors and neurologists don't have any answers, and there doesn't seem to be a plan in place to help her towards making positive progress again... I feel like they've given up, and didn't even really have much honest interest in helping her in the first place. She's had two neurologists while back in the states, both of which don't seem to have any actual plans... they don't seem to know why she's regressed, but think it's more psychological than physical. Apparently even her speech therapist has given up.

Anyhow, I'm worried that she's suffering from depression... she never wants to talk, or see her friends. She has very few interests, and spends most of her time in doors. During the day, she does a lot of simple puzzles or reads the newspaper or watches TV... Plus, she never wants to talk about "it".

I know that I've written a lot of stuff here, but no specific questions... I guess I'm just hoping that someone reads through this and has some insightful or helpful words on what to do... perhaps some suggestions.

Thanks
Greg

Some thoughts for you
 

Hi Greg,

Wow, what a difficult situation for all here. It's clear how much you care for your Mom and I'm glad you are all together in dealing with this. It's probably pretty depressing for her, for sure. I'd try to do whatever possible to make her comfortable.. if she is open or could be convinced to accept some physical affection, I think it could be very therapeutic to have some hugs or cuddle time every day.. physical touch and oxytocin, released during physical contact, can be so healing. Babies who don't get physical touch don't thrive, and we adults are like that too. Also any music that she likes, decorating her room with pretty colours or images she likes to look at, watching funny or cute/sweet videos or anything that could make her smile or feel good for a little, sharing things like this with her, spending some time with her daily, in full loving compassion and presence will really help also.

Even if it doesn't cure what she's going through, it will really support her and help you and your wife to feel like you're doing all you can for her too. It is hard to watch a loved one suffer and to feel helpless, and family members often struggle to maintain an emotional connection when they feel trapped in these feelings, meanwhile the ill person may feel like a burden and feel depressed and alone, so it is hard to connect while everyone is feeling badly, but this is what is needed.

I don't know much about the condition, but my suggestions would be to see if you can take in some extra virgin coconut oil daily, morning and night, for a while.. it can melt at relatively low temperatures if she is able to swallow at all, or some wild salmon oil along with very nutrient dense foods, as much fresh, alive, deeply coloured foods as you can, like blended green drinks, etc. Also is your water fluoridated? Some people can have trouble with these kinds of things after a brain injury.

I also may be a bit "woo-woo" here but I have found that spiritual practices like prayer and meditation, alternative therapies, energy medicine and energy healing work like Reiki and things like this can be very helpful to the healing process, especially in people with very sensitive systems, and are very supportive to healing even if it is merely "the placebo effect" in action. Whatever works, I say! Another thing you could get for her is Bach Flower remedies, which can be applied transdermally as well as taken internally. These are highly effective homeopathic/energetic plant tinctures that cost about $12 bucks each at a health food store. It couldn't hurt to try.

It's clear how much love there is in your family, how important your Mom is to you, and that's worth so much.. she is lucky to have a son like you! I wish you all the best.

<3 T

Hi, I'm sorry to hear about your Mum.

My experience is a little similar but very different at the same time.

I have had three episodes of "generalised dystonia" or "locked in syndrome" or "cerebral posturing"..... Depending on what doctor I'm talking to.

Luckily my episodes have been just that....episodes.

While in that state my body stiffens my arms and legs extend, my back arches. I can't talk and I can't focus my eyes. However, I understand everything and feel everything. Oddly enough I feel disconnected from the emotion of it, it's as if it's happening to someone else. I remember at one stage having the ICU doctor leaning over and talking about brain damage etc and I was lying there thinking how handsome he was :D. I also made note that the hospital really should clean their air-conditioning vents more often. In my case there is a very clear disconnect between body and thought processes. My last episode was about two months ago and while I dread having another episode and perhaps even a permanent state, I still feel disconnected from it. I don't know if it's a defence mechanism to save your sanity or if it's a brain damage thing but if your Mum is experiencing anything like what I have, she is probably just emotionally disconnected and living within her own thoughts.

As for treatment, they tried the usual sedatives, antispasmodics, anti seizure meds etc. I didn't improve until they gave me huge doses of intravenous benzodiazepine. Even so I was "non verbal" for many hours after my body relaxed.

I didn't have any residual swallowing problems with this last episode but the episode before that, I had an inexperienced nurse (being kind to her here) try to force a tablet and water down my throat and I choked and had to have the fluid sucked from my lungs.

BTW, I saw a program on one of the cable TV channels ages ago where they gave patients in supposed long term comas or similar, Stillnox tablets and they responded well and emerged from their withdrawn state. The improvement only lasted while the tablet had an effect so they were very sparing with the dose and number of times they administered it. I think the documentary was made in South Africa. It could be interesting for you check out.