Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the tag “cognitive therapy”

28 Jul 2012
6 Comments

I can’t do it all:

 

I’ve been at a breaking point for weeks now. It seems like when you think you can’t handle one more thing, five more things are forced upon you.

All of the things that I’ve been going through over the past few weeks are related to having a brain injury, and it has made me SO angry, and so upset because there is nothing that I can do about it.

I’m stuck living with it, and there’s nothing more that I can do to fix it. Don’t get me wrong, I am trying to fix it still. I’ve just started taking several new medications to help with the things like pain in my hands, cramping, shaking, etc. I’m going to start taking medicines for ADHD to see if that will help with my focus, and I will start taking anti-depressants to see if that can help make me happy that I have a brain injury and have lost everything I was working so hard to achieve over the past few years.

You know, I’m just going to say this. I think people, doctors, therapists, all believe that when life hands you shit, you should smile about it and exclaim how fantastic it is and not feel horrible that you’ve been handed a whole load of shit.

If you lose the love of your life or a child, and spend the next few months crying over that, they believe that you need antidepressants. They believe you are depressed. I wonder what people did before they had antidepressants?

They mourned, and it was an expectation. They wore black. They stayed inside. They didn’t participate in normal social activities, but somewhere along the way, we began denying ourselves this process, and began to feel that if you were upset that the man/woman you lived with for 50 years died, that you should start taking antidepressants to help get you through it.

Now, I don’t have all the answers. I don’t. I could simply argue that people would have used anti-depressants if they had them available. We have advancements in medicine that make these wonderful new medicines available, so why shouldn’t we take advantage of them?

But, I think there is a need to find the middle.

For weeks, I’ve been struggling with the stress of dealing with lawyer stuff, family issues, work issues, health problems and then the disheartening realization that I am still unable (at this time) to return to studying for the MCAT. AND it really hit home this week that this totally SUCKS, and it’s completely unfair, and there is nothing that I can do about it.

I have SO much stress directly related to having a brain injury, and it could have been prevented. It SHOULDN’T have happened!!!

No matter what happens, I will never receive enough compensation to make up for what I have lost, and at this point, I don’t think I’ll receive any compensation for what I have lost.

So, I was at my cognitive therapist appointment and tearing up at the idea that they want me to do more there as well. I’m just so fried mentally, emotionally, etc that the idea of doing these worksheets that a 7 year old would have no problem doing about caused me to have a complete breakdown.

And then to make it even worse, my therapist looked over at me and told me that I would need to start taking antidepressants or I would need to give up things that I was already doing or wanted to do. She told me that I needed to stop doing things in order to get better because if I was so overwhelmed when I came in to work with her, then I would not be able to do anything that they needed me to do.

Of course this makes sense. If I’m so stressed out that the thought of doing mental tasks that they require me to do sends me into a tizzy, then they really can’t do anything for me.

This ramped up my anxiety and stress by 80. I mean, my therapist understands me, and she has helped me so greatly over the past several months. She KNOWS and UNDERSTANDS what I’m going through. She has the answers, and she’s a fantastic person and a wonderful friend, and if there is anyone who is going to help me get back to “normal” then it is her.

What am I going to do if I lose her too?

So, I’m left with the choice of going on antidepressants or stopping therapy. There really is no choice. I’ve already made the call to my doctor.

I have to say that even I don’t cotton to the idea of going on antidepressants, I understand why my cognitive therapist wants me to do it. I’m functioning on the edge of about completely losing it every day. She can’t work with that. And, I spend a good portion of my therapy time discussing how crazy my life is and how stressful it is, and that adds extra stress to her life.

As she put it, she sees a younger version of herself in me (sans the brain injury), and it is physically and mentally exhausting to see me make the same mistakes that she made.

In the end, she said, I can’t do it all, and I spent the night wondering what was I supposed to give up. How was I supposed to give something  up? I can’t very well go home, and say to my kids or Tom, well, I’m sorry. I’m unavailable for anything any longer, fend for yourselves. I can’t call the lawyer and say, sorry if you need answers to the questions that you want me to answer, figure it out on your own. I can’t call my disability insurance company and say, too bad if you need medical records, I have brain damage so screw you. I can’t walk into work and say, I’m just going to stare at a wall for the next 5 hours, don’t bother me.

So what am I supposed to stop doing? I have no flipping clue.

That night, I went to my psychologists office, and I’m going through all the same stressful things that I went over at my cognitive therapists office. I was overwhelmed. I am overwhelmed. What am I supposed to do?

Can you imagine my surprise when she told me that I needed to start taking medicines for ADD? She felt that I had a long standing issue with ADD, but that the brain damage has just pushed it over the edge. She believes that taking medicines for ADD would really help ground me and help keep me on task.

At this point, I will try anything. Truly, I think I will try anything. So, I added that to the list of things to see my doctor for. But, then she told me something else, she told me that I needed to give something up, that I can’t do it all. It was hard enough for someone who didn’t have a brain injury to try to accomplish what everyone wants or expects me to accomplish, so I shouldn’t put that extra pressure on myself to be perfect or to do everything that everyone wants me to do.

Here it was, two people, two extremely smart, extremely wise women telling me that I was going to have to stop trying to do everything. I have to accept that I can’t do the same things that I used to do, no matter how unfair it was. I have to stop telling myself, I used to be able to… Having that mentality, holding onto the past, will keep me from moving forward in the future. Wow, right?!

I have to learn to accept and be able to say: I can’t do it all.

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Posted in I just have to say this: and tagged , , , , ,
19 Apr 2012

Having my Cake:

The past few days, I’ve had a hard time understanding things.

I don’t know if I’ve explained this issue previously, but I’ll take some time to revisit it.

When I first developed EPM, one of the biggest signals to me that there was something majorly wrong was that I wasn’t able to form words.. I wasn’t able to make sense or explain things, and I was also having a very hard time understanding what other people were saying to me. It wasn’t that I couldn’t hear them. I could, but what they were saying wasn’t registering.

In the past 10 months, that has improved, but I still have periods where I have great difficulty understanding things. It just doesn’t register.

These issues tend to happen when I’m under greater stress or really tired. Fatigue and stress don’t cause them; they just get worse.

It’s a catch 22 because when I’m really stressed, well I really want to post what’s going on.

I guess this means, please forgive any rambling or if this doesn’t really make a lot of sense.

First, I want to clarify from my previous post for those who really don’t know me: I don’t drink. I for whatever crazy reason love  to make comments about drinking.  Maybe I’m subconsciously wanting to become an alcoholic, but I don’t have the ability to do it.

Sorry, I shouldn’t make light of being an alcoholic. I know way too many of them, and it’s a hard disease to live with.

That said, I make references to drinking, but I VERY rarely ever drink. I get sick when I drink, and so only drink on very rare occasions and never more than one or two drinks at a time.

It suddenly dawned on me today that people might actually read my blogs and think that I’m really an alcoholic or “drowning” my sorrows in alcohol, and I wanted to clarify. I drank a beer, and literally shed a few tears.

I did not spend the night crying myself to sleep nor did I drink myself into a drunken stupor.

Actually, I drank a beer, cried a few tears, AND ate about 5 tablespoons of Ben and Jerry’s…can’t remember the name of it, but it had cookies in it…chocolate chip cookies. And it was pretty damn good ice cream.

Really folks, I don’t know what’s more depressing the fact that I literally called my last post “drowning my sorrows” or the fact that I had any sorrows to drown.

Moving on, I have no idea what the cake reference was in regards to. I had this post planned in my head around 5pm, and now I can’t remember what it was about.

I wanted to clarify the alcohol references. I’m hoping as I type what I think, I’ll remember what it was I wanted to say about cake.

OH. Bingo.

It’s come to my attention that my memory sucks. Ha. How ironic?! I was going to post about how bad my memory is and I couldn’t remember it…HA. You GOTTA love that. HA! I am literally laughing out loud. 🙂

Hopefully, you are too because if you have CPM/EPM there are very few things that you can really laugh about.

Ok, so settle down because this is the meat of my post:

My memory sucks. I know it sucks way more than most other people know it.

I KNOW my memory sucks, but that doesn’t mean that I don’t remember anything at all. Right?

Previous to my injury I could recall everything. There were very few things that I would need to write down. I could recall great details in everything, everything.

Now, I know that’s not the case. Just ask CVS who has called me for over 3 weeks, 3 times a day to pick up my prescription medications.  They were literally calling me three times a day.

I made it my intention to pick up the prescriptions every day, but I forgot, everyday. There were days that I literally DROVE past the place not once by several times, and I still forgot to pick up the prescriptions.

I started having extreme anxiety over getting the prescriptions, and every night I would sit down on my couch or lay down in my bed and think: SHIT, I forgot those FREAKING prescriptions AGAIN. I’ll have to do it tomorrow.

And then I would forget again tomorrow.

Guess what? I finally picked up the prescriptions. Yep, yesterday. Guess what? The reason I was getting three calls a day was because I had three prescriptions to pick up. Guess what? I could not remember dropping them off. I had NO recollection of dropping them off. I thought I was going to pick up my thyroid medication because I’m almost out of them, and I thought, “CVS is calling me because I called in my thyroid prescription a few weeks ago because I knew I would forget calling it in and I wanted to make sure I had them before I run out”.

Guess what? It wasn’t my thyroid medication.

FREAK. The cycle begins again!

This is just the TIP of the iceberg regarding how my memory has been effected by EPM.

I know I don’t remember things, BUT I also do not want to admit that I don’t remember things!!

So how does this insanity work?

I want my cake and I want to eat it too!

I want people to understand that I have memory issues, but I don’t want to admit that I “forgot” something when I do. Guess how well that is working?

Folks, I really believe that I remember things better than what other people account that I do, but I also realize that have limitations, but I do not want to account for what other people tell me that my limitations are.

And so begins the paranoia and my frustration and my anger and all the crap that you can associate with slowly losing your mind.

My pride and mind is telling me that I remember all of the times that I forget. I think, I may not remember when I need to, but I do remember at some point, and that is good enough.

But then, I was in my car today driving to the health food store, and I couldn’t remember what the two things that I needed to remember were. It wasn’t the things that I was going to buy from the health food store. I really felt I would remember those things, but I needed to do two things today, and I still have no idea what those two things are. Or if there are actually only two things that I really need to remember.

Of course, I got to the health food store and I didn’t remember all of the things I actually went there to buy because I thought, there aren’t that many things, so I won’t forget any of them.  I don’t need to make a list because I can manage just picking up a few things at the store. (See, I even try to delude myself into thinking that my memory issues aren’t that bad.)

So here’s the craziness. I KNOW I HAVE MEMORY ISSUES, I KNOW IT, but I DON’T WANT TO BELIEVE WHEN OTHER PEOPLE TELL ME THAT I’M NOT REMEMBERING CORRECTLY.

I’m NOT WRONG. THEY ARE. And to make things truly crazy, THEY KNOW I HAVE MEMORY ISSUES AND SO THEY ARE LYING TO ME AND ARE TRYING TO TAKE ADVANTAGE OF THOSE MEMORY ISSUES.

Folks, this is how it is. This is how insanity works.

I do not know when people are taking advantage of my brain damage, when I’m wrong, when I’m right, when someone else is lying to me.

Unless, I carry a voice recorder around everywhere I go, I do not have any proof as to whether or not someone said this or didn’t say that.

I really believe people are taking advantage of my memory disability, but how do I know? What if it is just me? What if I’m not remembering as much as I think I remember?

I have Alzheimer’s, dementia, and paranoia all wrapped into one neat little package called EPM. OR people are exploiting my weakness and disability.

TRY FIGURING THIS ONE OUT FOLKS!! Is it ME or THEM? And how do you tell?

This doesn’t even touch the fact that I am LOSING memories. I’m losing precious events in my life that I CAN NOT remember. I can not remember if I took a close friend out for her birthday lunch. I really can’t remember it, and if I can’t remember that then how many other MUNDANE, unimportant things am I forgetting?

I leave you that little gem to think about because if you don’t have CPM/EPM, but a member of your family or friend does, consider what type of insanity they are facing every day before you get angry when they ask you for the twelfth time today, what’s for dinner?

Just think, almost everyone who is over the ago of 60 is experiencing some form of memory loss or dementia, YOU could be that person one day, and how will you feel when you start to lose your mind?

(To my CPM/EPM friends: I just want to let you know, there is hope with these issues. I’m not saying they are going away, but I’m learning skills to deal with them through, my absolutely amazing cognitive therapist, Angela C. God Bless, her! I think she’s going to buy me a life time supply of post it notes 🙂 Love to Angela 🙂   )

Posted in I just have to say this: and tagged , , , ,
13 Apr 2012
5 Comments

What was I thinking:

Ok, I hope you can relate to what I’m going to post tonight, but maybe you won’t. Here’s the thing, I really don’t know what’s “normal” or what’s not normal in regards to my experiences after brain injury.

I had another appointment with my cognitive therapist this week, and God bless her (Angela C.) I’m not sure how she does what she does because if her patients are anything like me, then there’s a whole lot of craziness that comes through her door each day 🙂

I really have to give her kudos because I don’t know what her “role” is in my actual therapy. She’s obviously there to help me rebuild or learn to navigate through the changes that have happened after my injury, but I swear I threw a curve ball by asking her about the emotional craziness I’ve been dealing with over the past 10 months. I have to say she not only handled my emotional unraveling with professional grace, but she provided me with excellent advice.

As I mentioned before, she is above and beyond what I could ever ask for, so much so that I both forward and slightly dread meeting with her.

Now, doesn’t that seem a bit contradictory? Nope not really..let me explain.

I love going to my sessions because I know I’m going to get somewhere, make a step forward that I need, but I also end up tearing up about 5 times during our 45 minute to hour long session, and if there’s anything I hate to do, it’s to lose control of my emotions in front of other people.

My last session with Angela was no different, and to make matters slightly worse, I confided in her regarding my somewhat lack of ability to control my impulses.

I developed the brain injury in June, and one of the first issues I experienced with impulse control was in September.

I very suddenly decided to go to Jeffrey’s funeral. (Jeffrey had CPM, and was a very big source of support for those of us who have CPM/EPM.) He died very unexpectedly from an issue related to CPM.

I wanted to go to his funeral, but it was a very long drive and I was not supposed to drive alone because of the neurological issues that I had. It was extremely dangerous, and I was going to be alone. It was overall not a great idea!

But, I decided to go and I went. Well, about an hour into my drive, I thought, it was going very well, and wouldn’t it be great to travel across the country.

So, I called Tom, and told him I wasn’t going to go just to the funeral, and that I didn’t know when I was going to be home. I wanted to visit family and friends and see things that I’ve always wanted to see, like the Grand Canyon.

I didn’t even have more than 2 days worth of clothes with me. I was only going to the funeral and then straight back home the next day.

There are so many absolutely crazy things with that decision, but to name a few; lack of money, traveling alone, not having clothes or toiletries, not knowing where I was going or where I was going to stay….really folks the list quite extensive on why this was an absolutely crazy thing to do. But at the time, it didn’t seem crazy at all.

Fast forward several months, and I was on the way to return something to a store with my son. There was a pet store that was on the way. We stopped inside. I had NO intention of buying a pet, but after an hour, we were walking out with a puppy and about $200 in puppy supplies.

Now, anyone in my family could tell you, this was nuts. I would never spend money like that on a pure breed dog, let alone GET a dog.

The list really does go on and on with decisions that I am constantly making every day that is beyond my old scope of reason, as well as my ongoing dwelling on decisions. It takes me at least 3 times as long to try to make a simple decision.

SO, I was sitting in front of Angela explaining all of my crazy impulse issues, along with my recent sudden decision to end my relationship with Tom, and wanting to know if I was losing it…was this normal? Were these issues being caused by the brain injury or am I losing my mind in other ways?

Now that has to be a hard question to answer.

Of course, I’m distraught. Over the past 10 months, I’ve felt like I don’t know who I am any more. I’m not sure what’s wrong with me. I don’t know if what I’m experiencing is “normal”, or if I’m losing my mind.

Has the brain injury changed me? Or am I changed because of the brain injury?

To me, it’s hard to distinguish between the two, so let me try to explain a little bit more about what exactly what I mean by that.

Having the brain injury change me, who I am and what I think, is something I can’t control. It’s something that I have to learn to manage and live with.

If I have changed because of the brain injury, then I am now making alternate, conscious decisions to do things differently because of some realization that my life is finite or live every day to the fullest type of mentality. I am in control. I am just choosing to do things differently because of the experience that I lived through.

I have always been a  very responsible person. I’ve always made decisions that are in the best of interest in my family or myself, but I am not doing that now. I’m struggling to control my actions or failing completely at controlling them, and this is all extremely stressful to me.

What’s happening?!

This is what I was asking Angela, and it’s a difficult for any person to answer let alone a person who has only seen you 4 times, but she handled the question with great tact, and she gave solid advice…which is why I give her major kudos. If someone approached me with a similar question, I don’t know if I would have been able to give them a great answer.

She does think there is a physical response to the brain injury and issues with dopamine receptors in the brain…and this makes sense because I have other issues with tremors, shakes, jerks, spasms that are also from the brain injury that are also linked to dopamine receptors in the brain.

However, she also said that there is probably a psychological “root” to my current impulse issue which she explained with such extreme accuracy that it makes me think she is psychic. Either she has access to a medical history that I didn’t think was available to anyone, or she is totally psychic because she so accurately described my history that I wondered if she was related to me in some secret way.

I really don’t know how she did it.

That said, she advised me to not make any impulsive decisions for awhile. She told me that I was going to have to tell my inner child, “NO”.

I really think that’s going to be easier said than done.

Now, I’m going to go a little bit more in depth to why I’m feeling especially crazy since the brain injury, and this is something that I didn’t discuss with Angela, but I really think it’s important to bring up before I forget it again.

In the past few months, I’ve had this emotional disconnect from things, and it’s something that I really can’t explain.

It’s this growing ability to get angry quickly as well as feel completely void of feeling at times when I should feel something.

When I was being treated for EPM in the hospital, I felt his overwhelming sense of compassion, understanding and love for everyone, but now, I feel this lack of feeling for things, but I also tend to experience periods of inappropriate tearing.

I don’t really “cry” a lot, but my eyes will well with “tears”. This happens a lot when I discuss personal issues with my boss, which is a time that I really don’t want to be on verge of crying.

Seriously, I have such a lack of control of this at this point. It seems I have no middle ground. Either, I feel nothing, feel completely angry or am on the verge of crying.

It’s such an extreme range of emotions, but the one emotion that I haven’t really felt since having this injury (outside of the hospital) is a sense of love or happiness.

Now, right now, I’m blaming this issue on Tom. I’ve convinced myself that I’m not happy because of the stress in my relationship with him, but I have to pause to wonder if what I’ve always said is true: the only person who can make you happy is you.

If that’s the truth, then why I am not I happy? Why are the only major emotions I feel right now anger or frustration? Why am I so irritable over every little thing? Why am I going pretty much from one extreme to the other? Is this being caused by the brain injury? And if so, how will I get past it?

I do believe the brain injury has something to do with it. I’ve read a lot about how people with EPM/CPM tend to experience a shift in their personalities, but I really don’t remember everything I’ve read about it, and I am finding less and less time to research 😦

That said, I am hoping to look into this further, but I also HATE to make excuses for my behavior. I really believe ultimately that people have control of their decisions, etc and how the act.

I would LOVE your feedback regarding this post because truly this is one of the things that really eats at me. Are you experiencing anything that is similar? Have you noticed changes in yourself or your loved one with CPM/EPM? Are all of the things I discussed tonight just happening to me?

Let me know!

Posted in I just have to say this: and tagged , ,
03 Apr 2012

Just another day:

Hello All!

I’m sorry it has been so long since my last post. I have a million excuses as to why, but none of them are really good. I’ll give them to you anyway: I wasn’t home. I’ve been busy. My hands keep cramping. I have the attention span of a gnat. I have lost my train of thought on what to blog about next.

Okay, so some of those might be good reasons.

So, what’s happening with me?

It’s almost 10 months since I developed hyponatremia and subsequent myelinolysis! I can’t believe it’s almost been a year.

I have to say that some of my more concerning symptoms, mainly the speech issues, have become significantly better. Oh, I’m not going to pretend that I’m completely back to normal, but from where I was to now, there’s been a dramatic and miraculous improvement. I am extremely grateful. It gives me a new appreciation for people who live with speech impairments. They say people first judge you on how you look, but the very next thing is how you speak.

Despite the fact that I work at Victoria’s Secret Catalog, I do not have an extraordinary fashion sense…well, I do have a pretty good fashion sense, I just don’t have the financial means to support it. So, the fact that my almost everyday ensemble consists of jeans, a tee shirt, and a pair of worn out Asics sneakers, probably doesn’t scream fashion guru or speak volumes about who I am as a person, that means that the way I speak probably has a little bit more influence on people’s opinion of who I am.

This means the more that I stutter, stammer, and trip over my thoughts, combined with the super sloppy, casual wardrobe choices that I can afford might lead a person to suspect, I’m slightly retarded.

Previous to my impairment, I had the ability to impress people with my wit and vocabulary fluency.  I was viewed as more of a nerd who didn’t need to worry about fashion because I had more important things to be concerned with than wardrobe choices.

Ok, so to prove my point…it has taken more than 30 minutes to write this. This isn’t an epic story. It’s not even utterly brilliant. It’s just an explanation of my speech issues. My mind skips like an old vinyl record.

I will literally go from thinking about what I want to write, to trying to find the words that I want to use, to trying to convey what I mean in a way that makes sense to everyone else.

It is so freaking frustrating!!

It really is, and if you have CPM/EPM, than you might understand exactly what I’m describing. If you have a brain injury or learning disability, you might also understand. It’s not WHAT you know or understand, it’s an inability to express what you know and understand.

See, just writing this jogged my memory; I wanted to continue to write about brain injuries and how to find support through the Brain Injury Association.

So, now, I’m thinking…I should be writing about the BIA, but this is the wrong place to write about the BIA. I need to stay focused and try to regain a sense of this post.

Getting back to my original topic…my speech has improved, but I still have ongoing issues, especially when I’m nervous. I would have to say my biggest obstacles are the movement issues (tremors, jerks, spasms and cramps), and cognitive deficits (learning impediments, memory problems, attention problems, and recall).

The movement issues aren’t extreme.  I mean a person with late onset Parkinson’s has greater issues than I do. Some person’s with CPM/EPM have greater issues than I do. (I’m going to post a few YouTube videos to demonstrate my point), but I still have movement issues.

Right now, I am having a hard time keeping my left hand steady enough to type. My left thumb keeps twitching rapidly. It’s so annoying. I can’t do anything to stop it. Then it becomes painful. I really have lost function in my abilities to do certain things.

I was at the Columbus Zoo several weeks ago, and I tried to make a video of a leopard stalking an unexpecting rabbit that had wandered into its cage. After about five minutes, I was unable to hold my cell phone up to take the video, my arms were cramping so badly that I couldn’t hold the camera.

These movement issues are getting worse. I am not certain as to why. I know that some people who have experienced damage to the basal ganglia have late onset movement issues with dystonia and Parkinson’s like tremors. I am 90% certain that this is what I’m experiencing.

However, I have autoimmune issues, and I have to wonder if my autoimmune issues are contributing to the neurological manifestations of EPM.

I have a feeling that it will be extremely difficult to get an answer to this, but if I do find out more, I will keep you posted.

The other new symptom that has become apparent is autonomia. I’m not sure if I’m classifying this correctly. It’s actually a dysfunction in your autonomic nervous system. There has been reports of having irregularities in heart rate, blood pressure, central nervous system caused sleep apnea, etc.

When I had my sleep study (after diagnosed with EPM), I had one instance of central nervous system induced sleep apnea. I had taken ambien and I think that influenced my study because I did sleep better than what I normally do, but I do not know if it would make central nervous system induced sleep apnea better or worse.

I had issues prior to EPM with tachycardia. My heart rate has now become extremely erratic. I will have a pulse varying from 45 to 116. Literally, I will watch my pulse go from 59, 65, 80, 95, and then drop back to 50 in 10 to 20 second intervals.

My EKG has also shown “new” abnormalities.

The abnormalities in my EKG appeared when I was seeking treatment for EPM before I had an official diagnosis.  I’m almost 100% certain that EPM caused the change in my EKG.

I hope to get further testing that might be able to determine if my issues are being caused by my autonomic nervous system, but it most likely won’t occur until July or August. I will keep you posted.

I have to say one of the most positive experiences I’ve had recently is meeting with my cognitive therapist.

I am seeing Angela C with Kettering Medical Center, Kettering Ohio. I can’t say enough about this person. She has offered me hope for the first time in my recovery.

She completely understands what I’m experiencing, and that is refreshing both physically and mentally. Trust me, not all of the doctors I’ve seen in the past 1o months have been supportive or understanding. Angela gets it. She KNOWS where my deficits are. She understands that I was bright before my injury and that I was inspiring to be a doctor, and she is working with me to manage the deficits that I have to navigate around them to learn ways to succeed.

I am really excited to be working with her! I highly recommend that if you are experiencing any type of brain injury or even ADHD or ADD to  find a cognitive therapist to help teach you techniques so that you can become more successful.

One thing that Angela has stressed that I want to share: Be kind to yourself! It’s easy for me to criticize myself when I hit a wall, when I can’t think of a word, or when I become distracted for the 100th time in an hour. She’s teaching me to not beat myself up over it. The more I stress over these mistakes the more I derail myself.

The other thing I’ve been working on: breathing. Yep, I really didn’t know how much I tend to hold on to things when I’m not exhaling. I’m great at inhaling, but exhaling..well, I’ve got to practice. More importantly, breathe in deeply through your nose and exhale loudly and completely through pursed lips…a slow, steady exhale. It really does help.

SO, there you have it folks. I’ve discussed the physical and mental issues that I’m experiencing with EPM at the 10 month point.

I hope it helps 🙂

Have a great night, and feel free to contact me with any questions!!!

Oh, yes the videos…click below to see some of the videos of CPM, EPM issues. Keep in mind, I think these are extremes. My movement issues pale in comparison. I’ll post a few of my movement videos in the future.

http://www.youtube.com/watch?v=nnvcSGj7vY8

http://www.youtube.com/watch?v=58jik7RgZzs&feature=related

http://www.youtube.com/watch?v=v-_xNbZ5ef8&feature=related

Posted in I just have to say this: and tagged , , , , , , ,
15 Mar 2012
3 Comments

Brain Injury:

This might seem utterly ridiculous, but up to this point, I did not realize I HAVE a brain injury. EPM and CPM causes a BRAIN INJURY. Maybe it would be more appropriate to state, that I didn’t realize what it meant to have this injury.

Of course, I’ve known that I have had damage to my brain, but that already happened, and for whatever reason, I did not consider that injury along the same line of having an injury caused in a car crash or stroke, etc.

The injury was in the past. It happened. It’s over.

This is the reaction that I’ve had from all of my doctors up to this point. Every doctor that’s treated me for issues related to EPM has stressed to me that the injury has happened. It will not happen again. The damage has been done and from that point forward I will only get better.

Many of my doctors have stressed that because my MRI has shown improvements, healing, then it’s just a matter of time before I’m 100% normal again.

Let me stress, this is NOT true. As, I’ve mentioned on numerous occasions, the MRI detects inflammation in the brain and even though the inflammation does dissipate in the months after CPM/EPM, it does not mean that you are going to be 100% back to normal. You may or you may not. The MRI images do NOT correlate to the symptoms you experience with this injury.

My MRI images have shown improvements. My doctors have told me that I am certain to get better, and I have been left struggling with wondering; Why am I not back to my normal self? It’s almost 9 months post injury, why am I not normal yet?

Further, NONE of my doctors touched upon the issues that have been most concerning to me, deficits in my cognitive abilities. It is extremely difficult for me to stay on task. I have short term memory problems. I have problems with reading and writing. I have difficulty thinking of words. I have attention deficits. The list goes on.

I recently was in training for work, and after 30 minutes, I couldn’t retain any more information.

Have you ever made manicotti? If you aren’t familiar with it, is a large cylindrical shell. In most cases, you stuff the shell with a cheesy filling.  The shell is hollow and open on both ends. My ability to retain information is like a stuffing a manicotti shell. You can keep adding filling, but it’s just going to leak out the other side.

I might have retained some of the information from our recent training, but at this point, I’d say 70 to 80% is gone. I might remember parts of what I learned at points in time, but I almost guarantee that I couldn’t sit down and recall everything.

Here’s something that I don’t think I’ve discussed previously; I have found that my past memories have become extremely vivid and are constantly at the forefront of my mind. It’s so frustrating. I don’t know why these things are so blaring and concrete. I have no control over when they occur. I have no idea why they occur. They aren’t even significant events, but just random memories that are mundane and non influential.

Not all of them are mundane, and I have to say that’s even worse. Events that I would rather not think about come to my mind as well, bringing with me emotional turmoil and grief.

So why is it that I can remember sitting in the backseat of our beat up brown SAAB, as a kid, in the middle of the summer and arguing with my brother’s about Garbage Pail Kid cards, as we waited for our mother to come out of the grocery store around the age of 8, but I couldn’t remember to call my doctor’s office to schedule an appointment for the 4th day in row?

Folks, the stuff that filters through my mind on a daily basis in such GREAT detail about my past..from the weather and temperatures to clothes that I was wearing. It’s mind numbing. Why am I remembering these things constantly, but can’t retain 1/10th of events happening now?

After doing the research on my last post, Cognitive Therapy, I realized why. I HAVE A BRAIN INJURY!

CPM and EPM did more than just cause a temporary damage. I am utterly clueless why my current doctors who are treating me for this have been so adamant about not acknowledging this! I’ve spent the past 8 and a half months struggling to come to terms and prove that this isn’t something I’m making up. I’M NOT FAKING THIS, and now I understand why these things are happening to me.

I’ve had doctors tell me it was stress. It was from fatigue.  I’m faking these issues. It’s test anxiety. It’s not related to EPM. It’s long term ADHD. It’s from having high cortisol.

I’ve struggled to understand why these issues became a problem after I developed EPM. I’ve questioned my sanity. I’ve questioned the severity of these issues. I’ve wondered if I was exaggerating these problems.

I’ve had people try to tell me it’s normal. It’s what happens when you get older.

If you are reading this, then I’m here to tell you, those people are FULL of it.

Let me stress, the reason you have the issues that you do is because you have had a trauma to your brain!! The damage is not necessarily ongoing (though that is also questionable), but the cognitive issues ARE or at least can be.

I now have answers and understanding to why these issues are occurring AND I can share with you, hope.

I had no idea as to how much support there is for brain injuries. There is actually a tremendous wealth of information regarding what might be considered “minor” brain injury.

Now, I’m not going to classify EPM and/or CPM as a minor brain injury. There are people who are living their lives completely incapacitated, requiring 24 hour support. That’s not minor. On the other end of the spectrum, you have people like me, who have are “functionally disabled”. You can live your daily life with little or no assistance, but you have not returned to your former self.

The following information I found online from Dr. Thomas Kay a renowned neuropsychologist who has specialized in minor brain injuries:

There is a known natural course of recovery for concussion, and the vast majority of persons appear to recover completely. (“Appear” is italicized because there is increasing evidence that there may be sub-clinical residual damage that can become manifest under certain circumstances, or can accumulate and cross a threshold after a series of presumably fully recovered concussions.)

There are predictable clinical deficits that occur immediately after most concussions: problems with attention, concentration, and short term memory; irritability; headaches; dizziness and balance problems; sensory sensitivity). These are often referred to as the “post-concussion syndrome.” However, because only some of these symptoms come from an injury to the brain, while others come from non-brain body systems, I prefer to avoid the phrase “post-concussion syndrome,” and try to refer to “post-concussive symptoms.”

A subset of persons who suffer concussions, or mild traumatic brain injuries, have long term residual symptoms, and a smaller subset remains highly dysfunctional. There is a long standing, often bitter, debate about why some people do not recover completely from concussion or mild traumatic brain injury. At one extreme, some advocates maintain that all problems are due to permanent brain injury. At the other extreme, skeptics maintain that anyone who fails to recover from a concussion/MTBI either has psychological problems or is malingering, and maintain that it is not possible to sustain permanent neurological damage from a concussion.

He goes on to state:

It is important to realize that multiple factors other than neurological ones can contribute to the appearance of brain injury, or exacerbate the apparent severity of brain injury. These include pain, sleep deprivation, depression (which is extremely common), anxiety, PTSD, and the results of medication (especially narcotic analgesics).

The evaluation of MTBI is complex, and needs to sort out the various contributing factors. Comprehensive evaluation should be delayed until the natural course of recovery has been completed (often up to a year), and major psychological complications have receded. Briefer screenings can track cognitive recovery. Patients who are depressed will often perform much lower on cognitive tests, than when they are not depressed.

Tests of effort are also an essential part of neuropsychological testing. Multiple studies have shown a tendency for a high percentage of persons with MTBI to fail tests of effort, and underperform on cognitive tests. In my opinion, tests of effort may be failed for a variety of reasons having to do with motivation. In order for neuropsychological test data to be interpreted as valid, tests of effort must be passed. (Failure of tests of effort does NOT necessarily mean a person does not have a brain injury.)

Clinical treatment of persons with MTBI will depend on the relative contribution of neurological, physical, and psychological factors. The neuropsychological approach I take is determined entirely by the presentation, dynamics, and needs of each individual person. I conceptualize treatment of MTBI as the restoration of an effective sense of self. Limits on this restoration may or may not be set by neurological injury. Each individual is different.

I am going to elaborate on this post in the near future, but before I end tonight, I just wanted to share this exciting news. Yes, folks, we have a brain injury, and if you are experiencing these issues than you are not alone and there are people who will believe you and your issues. Most importantly, now you have a source for help. 🙂

Keep checking back on this post for the next few days because when time and energy allow, I will be updating with more detailed information for support and direction.

 

The Updates:

This is I believe an amazing quote:

Brain injury is not an event or an outcome. It is the start of a misdiagnosed, misunderstood, under-funded neurological disease.

This quote is from the Brain Injury Association of America:

http://www.biausa.org/

I really believe it is absolutely true. I’m hoping it is not true for you, but it describes me to a T.

Update:  This person found my site and after reviewing it, I really found the information extremely beneficial. I recommend checking it out: http://brainhealthresources.wordpress.com/2012/05/09/there-is-help-for-battered-athletes-and-tbi-patients/

Posted in Central Pontine Myelinolysis/ Extrapontine Myelinolysis and tagged , , , , , , , ,
12 Mar 2012

Cognitive Therapy:

Yesterday  (this was actually March 9 but I’m still writing this post :), I met with a cognitive therapist. I had done this earlier in my rehabilitation, but I found it to be a waste of time. My previous therapist worked with people who had major damage. If you read to them three to seven words, then asked them to repeat it, they weren’t able to do it.

I can repeat things back initially, but in five minutes, I can’t remember half of what you said. In ten minutes, I can’t remember 70% of what you said. The extent of this issue varies dramatically by how stressed I am, how much sleep I’ve had, how focused I am, if there are distractions,etc.

This is so stressful to me.

My first therapist didn’t seem to understand my frustration or the variability of in my symptoms.

Because my previous therapist recommended it, several months ago, I bought this really nice journal that I could fit in my purse and carry around with me so that I could keep notes. I did awesome with it the first week to 10 days, after that I have no idea where it went. NO CLUE!

I’ve looked for it. I’ve forgotten about it. Then I remember it and look for it again.

It’s so frustrating because I have no idea where it is, and I wrote down several things that I needed to remember, but now that I can’t find it, I don’t know if those things were really that important or not.

I had expressed to my original therapist that I had no problems with writing things down, but remembering where I wrote those things or what I did with the list or paper is the issue. She suggested the notebook, and as I mentioned above, this was a huge failure for me, and a continuing source of frustration and anxiety.

I wonder what the freak happened to it. Did it enter the Twilight Zone? Did my kid take it to school? Did Tom put it away somewhere? Is it shoved in a dark crevice of my car? (Notice, I how I’ve mentioned every other person as being responsible for it except myself. Despite the fact that I’m the one with brain injury, it is EXTREMELY difficult for me to accept that I am the one who has a deficit.)

You have no idea how much this eats at me. Thank God, by the end of the night, I will forget about it completely until the next time I remember it.

It’s frustrating for me that these things are happening. It’s not just not being able to remember but the frustration of being constantly distracted. I’m at a public library right now, and there’s SO much noise. There’s the ding of the elevator doors. There’s people coughing, talking, flipping through books, even the sound of my own typing is driving me crazy and causing me to lose focus.

I used to be able to study in the extremely busy passageway in the basement of a major university, and I could shut out everything without issue. I could go into my own little world in my mind, close the doors, and concentrate on physics or organic chemistry for HOURS. Literally, I would be able to do this for 8 to 12 hour stretches with just brief breaks. I was like a meditating Buddhist Monk. Now, I have the attention span of a fish, and that might be an unfair correlation on behalf of the fish.

I really thought when I started to see this new cognitive therapist that it would be useless. What could this person do to help me? How could she possibly know what I’m going through? I was very on guard prepared to argue my case on how EPM works and about how reading back simple lists probably wouldn’t help me get to my goal. I felt absolutely certain that because I’ve run into so many doctors who have raised their eyebrows and have doubted my sincerity, this would be just one more person that I would have to convince or teach about my condition.

Yesterday (03/09), I was having a bad day, and I certainly wasn’t at my best.  After my appointment, I left feeling relieved. Yes, relieved! This person gets it. She pulled out a sheet of paper that described what I’ve been experiencing to a T. This made me feel so relieved. I mean she knows what I’m going through. She understands what problems I have, and she’s going to try to help me get back on track.

More excitingly, she understands that I was a very capable, intelligent person before the injury, and she knows what I want to accomplish in the future. She’s looking at me as if I have a chance at still achieving my goals!!

Not only is she looking at me as if taking and passing the MCAT is absolutely achievable, but she worked with someone who was an ER doctor who had a brain injury and granted he’s no longer an ER doctor, but he’s a successful GP. This gave me a huge sense of hope.

I have not had any doctor at this point be able to do that. TRULY!! and I’ve seen dozens of them for this problem, but what she did for me in the two hours that I was there was give me a sense of hope. THIS MIGHT WORK!!

Let me try to explain a bit more about this. I’m not saying the doctors that I’ve seen previously to this point were just a waste of my time or were uncaring(some were, some are absolutely awesome). Some have really tried to assist me, but they didn’t have any plans. They didn’t pull out diagrams and wall maps with a step by step solution on how to get me back to where I was previously.

From almost every doctor, I’ve  gotten a response of: we think you’re going to be just fine. Just give it time.

I’m going to try to give you an idea of how this is such a screwed up way to handle an injury. If someone had a broken leg and you knew it was broken, would you tell them; you have a broken leg. If you wait about 6 to 12 weeks, it’ll heal. Then send him down the road?

NO! They’re right. The leg will heal, but will it heal correctly? No doctor would treat a patient like this. Once they determine the injury, the make plans. They either do surgery, put it in a cast, give the person crutches, and steps on what to expect and how to help it heal. Further, they asses the person over time to determine if they need physical therapy or additional steps to make the best recovery possible. They don’t simply state, well your leg is broken; have a great day.

When I left the hospital, I was walking into the unknown. Up to this point, I did not have anybody who said, this is what you need to do or I can help you get to where you want to go AND she knows where I’m going. She knows what I want to accomplish. She understands that I’m not just wanting to be able to sit down and read a book without forgetting what I read the day before; she understands that I want to be a doctor and that I need to have the ability to think on my feet.

So, what does this mean. This means my friends, Don’t Give Up!!! It’s been 9 months since I received this injury, and it’s been extremely difficult, but you don’t know what lies ahead, and you don’t know what’s going to happen next. Or if the next doctor’s appointment, is going to give you the person you need in your life who will reach out their hand and help you get to where you need to go. HAVE HOPE 🙂

Finally, I want to leave you with the information that my new therapist has given me because if it doesn’t hit the nail on the head, I don’t know what will.

Ok, folks, I spent over an hour trying to find a link to this doctor’s book, but I couldn’t find it, so I’m going to list some of the information from the pages that my therapist gave to me:

Excerpted from: “The Unseen Injury”, by Thomas Kay, Ph.D-neuropsychologist:

Statement of the Problem- We (a group of rehabilitation specialists in NY University Medical center) discovered that these patients appeared fine until they attempted to resume their responsibilities at home or at school. When they did so a significant number experienced great difficulty. They complained of inability to remember, concentrate, organize, handle a number of tasks at once, and get as much work done as efficiently as they used to. Their relationships with family, peers, and bosses often suffered and they developed psychological problems. their doctors were unable to find anything wrong with them and they were thought to be having psychiatric problems-or worse yet, to be faking.

Diffuse Brain Injury- there is evidence that the subjective complaints and cognitive problem encountered by some persons after MBI, may have an organic basis. This microscopic stretching and tearing occurs because of mechanical forces. (In toxic and hypoxic injury, nerve impulse transmission maybe interrupted/damaged).

Because of the very nature of diffuse MBI, the resulting deficits are not specific to particular domains of cognition (such as language, perception, etc.) Rather, it is the overall speed, efficiency, execution and integration of mental processes that are disrupted in a general way.

Nature of the Deficits- A.) Speed and capacity of information Processing persons with diffuse MBI process information less quickly. They react less quickly, especially when faced with a choice, and simply take longer to mentally process most tasks. This goes hand-in hand with a reduced capacity to process large amounts of information at any one time as fewer details can be handled simultaneously. The threeshold for becoming overloaded with amount or speed is significantly lowered.

B.) Complex Attention Most persons with MBI have great difficulty splitting or shifting their attention among tasks, and can not efficiently execute complex operations that require multiple simultaneous in temporary abeyance. Similarly, flexibility of thinking may be reduced. there is a failure to shift to a new strategy or grasp alternative solutions, when the one presently being employed is unsuccessful. As a result of the above difficulties, there is often a decrease in complex problem solving.

C.) Learning and Memory: Additionally, failure to effectively sort out, organize and quickly store complex incoming information often leads to “missing” obvious details, or the inability to recall accurately and becomes experienced as a problem with “memory.” As a result, it is much more difficult to learn new routines, or large complex amounts of new information. There is great difficulty storing and retrieving NEW information. This may be auditory information, visual information, or both. Old information is intact. Most commonly, there is also a deficit in the spontaneous recall of newly learned information.

D.) Integrative and Abstract Thinking   Because of its highly intergrative nature, there may be deficits in the quality of abstract thinking. The ability to spontaneously make connections between ideas may be impaired and interpretation of the statemetns of others may be either overgeneralized or too concrete. There may be difficulty expressing thoughts concisely and accurately. Ideas may be expressed in an imprecise, roundabout, wordy manner. It may be difficult to find the right word resulting in deliberate speech with numerous pauses, at times, “talking around the word”.

E.) Executive Function  The process by which we plan, organize, initiate, monitor and adjust our thinking and behavior. The person with deficits in executive functioning may have difficulty setting realistic goals. They may be unable to efficiently plan and organize their thinking or behavior and this may manifest itself most dramatically in new and unstructured situations. they may be deficient in initiating new activities, once they are planned, and may be misperceived to be unmotivated. They may fail to notice when their performance is off. They may act impulsively or erratically, having difficulty modulating their behavior. Finally, executive deficits may take the form of failing to complete tasks as things are abandoned and never brought to completion.

F.) Emotional and Behavioral Control    Damage to the orbital under sided portions of the frontal lobes, and basilar and medial aspects of the temporal lobes, can result in the disruption of emotions and behavior. There is a disruption in the balance between lower emotional impulses and higher rational cortical control due to the disruption of nerve connections between these two areas. Emotions may suddenly erupt. The person may seem irritable.

There you have it folks. This describes me almost perfectly. I really would recommend that if you are suffering from a brain injury to print out this post and take it with you to your doctors appointments, give it to your friends and family, etc. I think it helps for them to realize, you aren’t making these things up. It’s coming from an outside source, a legitimate neuropsychologist.

I also want to stress that this does not mean that you will have all of these issues or that you will develop them in the future if you haven’t developed them as of yet. Keep in mind this is to give you an idea as to what has been seen in brain injuries.

Hope this helps!

 

Update:  This person found my site and after reviewing it, I really found the information extremely beneficial. I recommend checking it out: http://brainhealthresources.wordpress.com/2012/05/09/there-is-help-for-battered-athletes-and-tbi-patients/

Posted in Central Pontine Myelinolysis/ Extrapontine Myelinolysis and tagged , , , , , ,

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