Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the tag “physical therapy”

Therapy:

Recently, and by that I mean back in April, I think, I was told by my neurologist that you don’t stop recovering from a brain injury.

He said that there used to be a notion that recovery happens only during the first two years post brain injury. He said that isn’t true. He said, recovery can continue to occur post two years.

I don’t know.

I can’t say that I have seen monumental gains or even noticeable gains. However, I am doing more than I did two years ago.

There came a point about 2 to 2 1/2 years ago when I was busy watching everyone else live their life, and I was spending my days on the couch trying to figure out what to do with my life. I’m sure you are probably doing the same, if you haven’t already moved beyond that point.

I would spend a lot of my time surfing social media, FB, and I was so envious of all of my friends and family that were living lives without a brain injury. They were going on vacation. They were participating in 5k’s, marathons, or even triathlons. Yes, they were going back to school, graduating from nursing school, medical school, or having more children.

My life was at a standstill, and I thought, I could spend the rest of my life sitting on this couch in my living room, or I could do something different.

Several of my doctors recommended therapy…aquatic physical therapy….boxing, biking, and others had been mentioned. I had already completed occupational, cognitive, and speech therapy. My insurance stopped paying for it, and I wasn’t getting anything out of it anyway. I don’t have access to Rock boxing near me, but here is a link for it, just in case you do:

Home

This is a program designed for those of us with movement disorders similar to Parkinson’s.  They have locations through out the U.S. I don’t believe that you need to have a prescription from your doctor, and other than that, I would recommend using the link to find more information.

Aquatic physical therapy is good for those of us who have limited range of motion and balance issues. You would need a prescription for that.

There have been significant improvements with movement issues caused by brain injuries after riding bikes.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4557094/

http://www.medscape.com/viewarticle/751998

This is a research article that explains how it helps with Tremors and Bradykinesia.

http://commons.pacificu.edu/cgi/viewcontent.cgi?article=1433&context=pa

It is also helps with balance. Now, from what I understand, if you do not have fantastic balance to start off with, go for a stationary bike. One of our CPM friends, Todd, has been biking for years,and he has said for years that it has helped him. Turns out, he’s not the only one seeing improvements with movement issues after cycling.

For me, I started walking. Now, there a gazillion reasons to get out and walk. It lowers BP, raises endorphins, lowers stress, etc. For me, I had to start off with just 1/2 a block. That was it. It was hard. It was a bit depressing because I would compare it to what I had been able to do pre-brain injury. Here’s the thing: DON’T DO THAT!!!! Do NOT compare your current self to your past self. There is absolutely NO good that will come of it.

As my daughter says, “You get what you get. You don’t throw a fit.” Yes, that’s easier said than done, but practice it. Even if we didn’t have a brain injury, comparing our former selves to our current selves, NEVER solves anything. It just doesn’t.

We’ve been given this life, and we’ve been given this struggle, but here’s the thing, if not this, it would have been something else at some other point in time. Cancer. Diabetes. Heart attack. Stroke.

So, we’ve got to suck it up and move on.

These therapies above, they won’t make turn you back into your old self, but they might help you move beyond what you have to deal with today. They will help. They will make you mentally stronger, if not physically stronger. They will give you the determination to succeed against the body that does not work with you as much as it once had.

And it is not easy. I promise you, it will hurt. Your muscles will hurt. You will get tired. You might even get angry, especially if you compare your current self to your old self. Hopefully, you will have a fantastic group of friends, family, and hopefully, a loving spouse to motivate you to keep working. Actually, you need to have a friend or spouse or someone to go with you. Trust me, you don’t want a broken leg or a bump on the head because you lost your balance…at least to start.

My first attempt at this was walking. I added more and more distance, and when I finally mastered about an hour walk a day, I started adding more tedious trails. Again, I did not do this alone. I had a good friend who went with me. It was important. Remember, this is not a contest: Pace yourself.

If you can, especially in the beginning, see a massage therapist. They will help work out the kinks that don’t seem to want to unkink on their own. Take about 400mg of magnesium with about 200mg of calcium. This will also help with cramping.

And maybe take an Aleve or Advil before or after you go, with food, because it can cause gastritis if you don’t eat. This will also help with muscle pain and cramping. Just don’t take those for too long because they can lead to stomach, kidney, and liver problems with long term use.

In the end, 2 years post starting exercising, I STILL have cramping within the first 50 yards of my hike or swim.  (I just started cycling, but I look like a drunk monkey because my balance is so bad- HA!) So, I can’t promise that the cramping or pain will stop, but you will develop the determination and the mental fortitude to keep going despite the pain because WE ARE STRONG. We are survivors!

Please contact me if you want more information on any therapies.

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Todd’s story (symptoms):

I am really impressed with how well Todd is doing. He really has made  such a dramatic recovery. It really gives us hope that if you have CPM, you can make great strides. So, Todd developed CPM in December of 2007/Jan of 2008.

Please see his story regarding the progression of his injury.

The following is a series of questions and answer regarding his symptoms:

I think your “addiction” to cycling is fantastic.

I am trying to do everything in moderation.

I hope you are doing well. If you can, if you can give a detailed account of your experiences to date. It seems like you’ve made a great recovery. Do you attribute that to anything? Any certain treatment? Any medications?

Deep down inside of me, I really believe it was God’s way of telling me “You have had enough scotch and Copenhagen”, although I have relapsed once one scotch and twice on beer, never on Copenhagen.  I once asked a X-Camel Straight smoker (may he RIP) after 17 years nicotine free if he ever missed it?  His verbal response was kind but his nonverbal wanted to rip my head off for asking such a stupid question.

The only medication that may have made a difference was the Carb-levadopa.  I was on that until I saw Dr. Bajwa, the local Parkinson’s expert, we weaned me off. (Jan 2008-Sept 2008).  He also diagnosed me with the Parkinsonism.  I have a functional left hand that has issues with a now overextended thumb.  I do not know if it was because of the CPM or the nasty restraints that I had to wear in the hospital.  At the time, I could not communicate, but I was extremely worried I was going to lose function in my hands because of the restraints.

Do you have any ongoing issues with movements? like cramping, spasms, jerks, etc. Do you have any ongoing issues with memory, concentration or learning? How about issues with vision, heart rate, hearing? Do your symptoms remain constant or do they come and go?

Cramping from my spinning.  Early on I had slight issues with memory.  While in the hospital, I always saw a yellow hew.  I have a constant ringing in my ears, which I do not think is CPM related.  I do experience thoratic pain some nights.  My bum left hand also experiences a dull pain and stiffness.  My facial expression is always straining and I have a constant primitive noise that I make and I stutter when excited.

Do you do any therapy or did you do so after being released from the hospital?

I did Occupational, Physical, speech and recreational while at Bethesda.  I continued with speech for an additional 3-6 months going through 3 therapists.  Last summer I spent $ to get a 4 year/40,000 mile tune up with the last and best of the 3 speech therapists.  Everyone tells me my speech is fine, but that is B as in B, S as in S.

Have you met any doctors that have helped with your condition, neurologists/ GP?

I haven’t seen a neurologist since Bajwa, to get off the Carb-Levadopa.  I take the mini aspirin, B-complex, Multi-Vitamin, chondroitin and glucosamine.

Have  you experienced new symptoms or have you had continuous improvements?

I only thing that may be new is the pain in my left hand.  I started doing what I call “old folkies” yoga in 2008.

“Old Folkies” because at 52, I am the youngest there.  Recently I am trying to do “Real” yoga, “real” because I am the oldest there.  Also am trying to do core and muscle classes at last 2 times a week striving to reach 3-4X a week.  I DEFINITELY do feel better exercising (just do not tell my Life Partner).

Have you met any new people with CPM/EPM?

I have personally met M, which was fabulous.  It was like a first date:  seemed like less than a minute in over 2 hours.  I have wanted to go and meet D (about 20 minutes from my Mom) but didn’t pursue that.

Did you have any treatments immediately following the injury? Like, hyperbariatric treatments, plasmaphoresis, anti inflammatory meds?

The only thing I can remember is the Carb-levadopa and Multivitamins.

Conversation continued (Sorry about some repeats, I didn’t remember asking the questions before):

Do you have issues with understanding with verbal directions or written directions compared to what might have happened prior to the injury?

No, I always had and still do have a great sense of direction.

Do you forget stories or movies or articles or recognize faces but forget the plot?

No, if I did, it would be more age related.

Do you have jerks and twitches?

No.

Do you have issues sleeping?

I do have sleeping issues that I am trying to figure out without seeing a Doctor. In a perfect world, I need 6-7 hours of sleep. I use to wake up to my life partner coming to bed—I sleep through that now. I have been going to bed at 10:30 and waking at 4:00. I have finally decided I am going to get up at 4:00 and try not to nap. I have a clean conscious—If tired, I can fall asleep anytime anywhere in an instant.

Do you find yourself easily distracted?

No.

Have you had issues with managing your finances, forgetting to pay bills or paying them more than once?

The only issue that I have had: We took some money out of an IRA to pay for college tuition. Forgot to tell my accountant.

Do you need help doing any daily activities, like grocery shopping?

No. Although everything is more difficult to do: Dressing, tying shoes, cooking.

Have you had irregular heart rates?

No.

Have you had hallucinations?

No.

Have you had any blackout periods?

No.

Have you had any weight gain?

No.

Have you had any issues with visual problems with blurriness?

No.

(Ringing of the ears does happen with CPM/EPM. It’s a form of tinnuitis. I have it in my left ear. It’s not daily. It comes and goes, but it can be rather painful when it does happen).

Mine is not painful.

Have you had issues with smelling?

No.

Fatigue?

No.

Any hormonal changes, like low thyroid?

No.

Issues with making impulsive decisions?

No.

Issues with writing (typing or handwritten) such as cramping in hands, tremors, etc?

I cannot write legibly anymore although only one check has been returned. A bill comes; I immediately make out a check—old school.

Any issues with swallowing?

No. more so with chewing.

Any issues with understanding what someone is saying to you?

No.

Paranoia?

No.

Depression?

I am a recovering alhocolic.

Sleep Apnea?

No.

Numbness and tingling?

In my left hand—I swear it is because of the hospital restraints.

Balance or coordination issues?

No.

Have you noticed any new symptoms developing or anything that got better but is now getting worse?

No.

It sounds like overall, except for a few minor speech issues and movement issues, you have completely recovered. Do you feel that is a correct summary? Oh, and in regards to directions, I wanted to clarify the question….do you have issues if someone tells you something verbally, like a new procedure at work, would you have difficulty remembering the task or understanding the directions? Oh, and how long overall do you feel it took for you to make the recovery to this point? Was it a matter of weeks, months? Oh, and what area of the brain was impacted? Was it the pontine area or the basal ganglia area? And how long has it been since the injury again?
I have the drooling and grunting issues along with my bum left thumb, also.  I am graciously, graciously, graciously……..thankful for my recovery, but I would not use the term “completely”.  I have no issues following directions.  I think it was the pontine, honey, is that right?  My life partner has to do the timeline?  I have no clue–we did 2 days of Tour de Kota on 2010 and in 2012 we did all six.  I was diagnosed with CPM in December 2007/January 2008?

Thank you, Todd!!! I hope that I can get more information regarding real life experiences with CPM/EPM. I think it might be an important reference for doctors who want to know what a person lives with after they leave the hospital. With Todd’s help, I’ll keep you posted of any changes and improvements that he experiences, but regarding this injury, he has had the best recovery, and he didn’t have any treatments except cognitive and speech therapy.

Please feel free to contact me with any questions or comments, and I will get them to Todd or try to find an answer for you.

 

Update:  Some information provided about how life has changed for Todd since his injury according to his significant other:

Well, to elaborate just a little more, the event happened right  before Christmas of 2007 and the way it was explained to me was that the demyelination of the myelin sheath doesn’t allow the nerve signals to properly transmit, therefore causing the symptoms of speech he has described.  Believe that would be the basal ganglia.   I would say those issues are considerably more difficult to deal with than “minor”.  Sometimes speaking is quite labored and will often cause him to speak very little because of the strain.  You can visually see the strain on his neck muscles when speaking.  The grunting is mostly in the am upon waking before his body becomes accustomed to regular movement.  That is why vigorous exercise demonstrably improves the situation and remains a vital component to his continued recovery and/or keeping him where he is at in the recovery process.
 
I believe that the recovery has been slow and steady ever since the event occurred. 
Thank You for input, Linda. I think that is really good to know. I think an outside, yet personal, description of the experience is very helpful.

Spasticity

This post is brought to you by my friend Deb. She has CPM/EPM too.  She’s had it for four years, and her story is one of determination and strength. She is truly amazing. I am going to start listing her story under the “Your Hyponatremia/CPM story” section, but this information on spasticity was gathered by her.

Thank You, Deb, for your help!! 🙂

Submitted on 2012/06/11 at 2:11 pm

Here is some info on spasticity and how it effects your body;
Spasticity is a muscle control disorder that is characterized by tight or stiff muscles and an inability to control those muscles. In addition, reflexes may persist for too long and may be too strong (hyperactive reflexes). For example, an infant with a hyperactive grasp reflex may keep his or her hand in a tight fist.

What Causes Spasticity?

Spasticity is caused by an imbalance of signals from the central nervous system (brain and spinal cord) to the muscles. This imbalance is often found in people with cerebral palsy, traumatic brain injury, stroke, multiple sclerosis, and spinal cord injury.

What Are the Symptoms of Spasticity?
Increased muscle tone
Overactive reflexes
Involuntary movements, which may include spasms (brisk and/or sustained involuntary muscle contraction) and clonus (series of fast involuntary contractions)
Pain
Decreased functional abilities and delayed motor development
Difficulty with care and hygiene
Abnormal posture
Contractures (permanent contraction of the muscle and tendon due to severe persistent stiffness and spasms)
Bone and joint deformities

How Is Spasticity Diagnosed?

Your doctor will evaluate your medical history in order to diagnose spasticity. He or she will look at what medications you have taken and whether you have a history of neurological or muscular disorders in your family.

Several tests can help confirm the diagnosis. These tests evaluate your arm and leg movements, muscular activity, passive and active range of motion, and ability to perform self-care activities.

How Is Spasticity Treated?

Treatment for spasticity may include medications like Lioresal, Zanaflex, Dantrium, Valium, or Klonopin. Occupational and physical therapy programs, involving muscle stretching and range of motion exercises, and sometimes the use of braces, may help prevent tendon shortening. Rehabilitation also may help to reduce or stabilize the severity of symptoms and to improve functional performance. Local injections of phenol or botulinum toxin may be used to relax specific muscles. Surgery may be recommended for tendon release, to cut the nerve-muscle pathway, or to implant a baclofen pump (intrathecal baclofen therapy).

Learn more about baclofen pump therapy.

How Painful Is Spasticity?

The pain associated with spasticity can be as mild as a feeling of tight muscles, or it can be severe enough to produce painful spasms of the extremities, usually the legs. Spasticity also can cause low back pain and result in feelings of pain or tightness in and around joints.

What Is the Outlook for People With Spasticity?

The outlook varies per person. An individual’s outlook depends on the severity of his or her spasticity and any disorder associated with the spasticity

I am including a few additional videos of spasticity. Please understand that these are demonstrations of extreme spasticity, and there can be ranges from slight to extreme. Also, I am including links to articles that I think are interesting. I live in Ohio where medical uses of marijuana are not allowed, but considering the drugs that I’ve been on in the past year to try to treat my pain, cramping, etc. If it was available legally,  I think I would try it.

The following video shows extreme spasticity:

http://www.youtube.com/watch?feature=fvwp&v=wfYNgYgEUoQ&NR=1

The following video shows a person who is improving from spasticity after therapy and baclofen pump:

http://www.youtube.com/watch?v=V2_3lXMKT7Q

Explanation of spasticity due to central nervous system:

http://www.youtube.com/watch?v=lEtkIIoo-3c&feature=related

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/

Discharged:

I think one of the hardest moments I faced after developing CPM/EPM was being discharged from the hospital. I literally had a bit of a break down. I don’t think my reaction was abnormal.

I was already beginning to see some improvements during the week I was hospitalized for CPM/EPM. At the same time, I was still really screwed up. I was NOT anywhere close back to my formal self.

I had only had the injury for about 10 days. I was aware from the very little access to information online that I would not be considered out of danger for at least 3 weeks from the date of injury. Some research suggests that you can be at risk for dying for up to 12 weeks. There’s just not enough research and answers fluctuate.

Everyday I woke up in the hospital I felt a sense of relief, but every time I went to sleep I felt anxiety. Would this be the time that I would not wake up or wake up and not be able to move?

At the same time, the doctors were monitoring my symptoms intently, but they were truly unable to do anything but watch me.

They were afraid to give me things like pain medications or even something as benign as glucose IV fluids because they were concerned with how they would impact my neurological functions.

Despite their not doing much of anything but observing, I felt a comfort in knowing I was there. If something bad happened, I knew that something could be done immediately.

I was also extremely dismayed at leaving because I was NOT normal. At that point in time, my list of neurological issues was extensive. I had problems losing my balance, walking into walls, developing hypotension when I was standing and hypertension when I was sitting. How was I going to get back to a “normal” life if I couldn’t even stand up for long periods of time without getting super sick?

One of my biggest issues at that time was my speech problems. It was extremely obvious, and I have a phone sales position. How could I perform my job if I couldn’t speak properly?

I’m sure if you are reading this, you are experiencing something similar to this or deficits that may be greater. It is terrifying. There aren’t any “real” answers. There is a lot of unknown.

This will probably lead to anxiety and depression when you are released from your hospital or hospice. It’s like losing an anchor in the middle of a hurricane.

What should you expect?

First, make a list of your questions. Is the hospital or rehabilitation center setting up ongoing occupational, speech, and physical therapy at home? Who will be in charge of your ongoing treatment? Will it be your general practitioner? Will it be a neurologist from the hospital who was treating you? Who should you consult regarding your work notes, disability claims, insurance questions? What will your insurance company cover? What will your co-pays be? Will you need 24 hour support, live in aid or daily assisted living? What type of medications will you need and those side effects? Is there any doctor associated with the hospital that has experience with CPM/EPM? Can you drive? Are there any specific physical limitations that should be avoided? Is there a support group they know of (you probably won’t find one for cpm/epm, but you might find one for neurological disorders or brain injuries?

Is there a source for your care givers? For instance, you may experience things like paranoia, dementia, irritability. These are normal psychological effects of it. If you become unstable, who should they call? If your symptoms become worse, what should they do?

If you were employed before your injury, you need to get in touch with your human resources department. If you are a caregiver of someone who has CPM/EPM, you will need to contact their employer to let them know what the situation is and find out about their disability policies. In most cases, you can fill out FMLA forms to help protect their/your job. If you are a caregiver, you will want to find out about becoming power of attorney.

In most cases, you were not anticipating this to occur, and it is a huge surprise. You might have been perfectly healthy previous to this injury, but now you’re facing the chance of having life long injuries. You probably did not have things like your living will, durable power of attorney, health care power of attorney.

IF you are reading this as a precaution, and you’ve never developed hyponatremia or your CPM/EPM, then I recommend taking the initiative and getting these basic legal affairs taken care of. Let’s look at the facts, you may never develop CPM or EPM, but you do have a fair risk of developing hyponatremia.

Further, you are going to die at some point, whether it’s a car accident in 3 weeks or a heart attack tomorrow. It’s inevitable. You need to be certain that you have everything ready for your family and your friends.

At the very least, you need to discuss your plans with your family and friends. It’s never a comfortable subject. No one wants to face the reality of losing someone they love, but it’s worse to leave the heavy burden to your family and friends when they are suffering from the pain of not having you in their life.

If you need help, most lawyers will consult with you free. There are legal forms that are available online. At the very least, you can create a document at home, typed or written that express your wishes.  You simply take that letter to a notary (usually a bank will have a notary) and sign and date it in front of them. It has to be signed and dated in front of the notary to be valid.

This is just a stepping stone on what to do. I hope this helps, and if you think of any additional advice to add, please feel free to do so.

Take care!

 

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