Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the category “I just have to say this:”

Dying to play Football:

This post is a bit of a stretch from my norm, but I really think it deserves a look.

I encouraged my son to start playing football in 2nd grade. I thought it would be a great way to build character, endurance, and I really thought it would help me as a single mom teach Zachary more about respect and discipline. Ok, and let’s face it, everyone wants their child to become an athletic super star.

I’ve always encouraged Zachary to dream big, and now that he’s finishing his freshman year of high school, he is dreaming big. He does want to play college level football for Ohio State University. It’s been his dream since he was in the fourth grade, and following that he dreams of playing for the NFL. I have never discouraged him. I believe he can do anything he wants to do, but after I sustained my brain injury, I’m looking at his “career” in football in a whole new light.

Tonight, I read another account of a retired NFL player committing suicide. My heart goes out to his friends and family, and I really believe that his physical trials after playing football need to be addressed.

Here’s the reality folks, a brain injury is a brain injury, and though there are MANY ways to have trauma to the brain, it really is all the same.

Let me clarify, I’m not saying that EVERYONE who has a brain injury has the same symptoms, but an injury to the brain is an intense injury, and it is an invisible injury to the rest of the world.

If you saw someone in a wheelchair, you have an immediate awareness that this person has a disability, but there are no external indicators that tell you a person has a brain injury. You really have no way of telling.

Trust me, before my injury, I would speak to people through my job, and I would immediately assume that they were really, really stupid. Some people, I talked with, I knew they had an injury because their speech was impacted, but for those where it wasn’t apparent as soon as they started speaking, I seriously judged their intellect.

I know better now.

Whether you were in a car accident, you fell down and hit your head, you were in sports like boxing or the NFL, or you just got into one too many fights, it’s important to realize that you may have life long issues related to these occurrences. AND please be aware, even just one event can cause these life long issues.

Okay before you start walking around with a helmet strapped to your head, in most cases, one bump to the head won’t cause permanent damage, but it is anticipated that more than 1.2 million people or more experience mild traumatic brain injury.

To differentiate, a person with a Traumatic Brain Injury usually needs to be hospitalized for their injury, and in regards to a Mild Traumatic Brain Injury, a person sustains ongoing issues after receiving a hit to the head, but did not require hospitalization. However, it is believed that there could be a significantly higher number of people with MTBI. The following quotes come from the CDC. In 2003, they were approaching congress to obtain more funding to study MTBI:

First, no standard definitions exist for MTBI and MTBI-related impair­
ments and disabilities. The existing Centers for Disease Control and Prevention (CDC)
definition for TBI surveillance is designed to identify cases of TBI that result in hospital­
ization, which tend to be more severe. MTBI is most often treated in emergency depart­
ments or in non-hospital medical settings, or it is not treated at all. Few states conduct
emergency department-based surveillance, and current efforts do not capture data about
persons with MTBI who receive no medical treatment. Additionally, neither hospital- nor
emergency department-based data can provide estimates of the long-term consequences
of MTBI.

In 2003, the Center for Disease Control defined Mild Traumatic Brain Injury as this:

The Definitions Subgroup developed a conceptual definition of
MTBI based on clinical signs, symptoms, and neuroimaging; and an operational defini­
tion to be used in identifying cases of MTBI in administrative databases, medical
records, and survey and interview results. The Methods Subgroup evaluated surveillance
databases and identified those that would best capture the types of data needed to determine the full magnitude of MTBI and related impairments and disabilities.

The conceptual definition of MTBI is an injury to the head as a result of blunt trauma or
acceleration or deceleration forces that result in one or more of the following conditions:
● Any period of observed or self-reported:
◆ Transient confusion, disorientation, or impaired consciousness;

◆ Dysfunction of memory around the time of injury;

Loss of consciousness lasting less than 30 minutes.

● Observed signs of neurological or neuropsychological dysfunction, such as:
◆ Seizures acutely following injury to the head;
◆ Among infants and very young children: irritability, lethargy,
or vomiting following head injury;
◆ Symptoms among older children and adults such as headache,
dizziness, irritability, fatigue or poor concentration, when
identified soon after injury, can be used to support the diagnosis
of mild TBI, but cannot be used to make the diagnosis in the
absence of loss of consciousness or altered consciousness.
Research may provide additional guidance in this area.
Based on this conceptual definition, separate operational definitions of MTBI are
recommended for cases identified from interviews and surveys, administrative health
care data sets, and patient medical records.

The conceptual definition of a prevalent case of MTBI is any degree of neurological or
neuropsychological impairment, functional limitation, disability, or persistent symptom
attributable to an MTBI.
The operational definition of a prevalent case of MTBI-related impairment, functional
limitation, disability, or persistent symptoms is any case in which current symptoms are 3
reported consequent to MTBI or made worse in severity or frequency by the MTBI,
or in which current limitations in functional status are reported consequent to MTBI.
Symptoms and limitations are described on pages 19-21. (http://www.cdc.gov/ncipc/pub-res/mtbi/mtbireport.pdf)

Ok folks, so what does all of that MEAN?

The CDC realized that in regards to mild trauma to the head, those hits that don’t require hospitalization, are being ignored in the medical community as causing a problem. They understand that these is a serious lack of understanding regarding the brain trauma that occurs after something as simple as whiplash in a car accident or a hit in the head during a boxing match. In order to try to obtain information for those that are being injured, but aren’t being hospitalized, the CDC created the above definitions for hospitals and doctors to use to try to document these cases. So, the above information is a guideline set up by CDC, so that they could start researching this issue further.

They set up the definitions in two parts. The first part is more of the physical symptoms that present and establish that a person might have experienced a MTBI, and the second part is the cognitive effects a person might experience after having a MTBI.

They are stating that doctors should pay attention to both definitions, the conceptual and operational.

This means, YOU should pay attention to both as well because if you fall down and are disoriented, you might experience ongoing issues. However, that does not mean that you WILL experience ongoing issues.

It is anticipated that approximately 30% of those who experience a hit to the head will experience temporary issues, but only 5 to 7 percent of that 30% will have permanent ongoing neurological or cognitive issues.

It is also believed that MTBI’s tend to build, and this brings us back to our NFL football players. If you had just one hit to the head or maybe two or three, the chances of your having a permanent brain injury are pretty remote, but if you started playing football in 2nd grade, and continued to sustain hits through high school, college, and then into the NFL, well by the time you’re in your early 40’s, your brain is going to start turning to jelly. Ok, not literally jelly, but figuratively.

So that brings us back to, you can’t see the injury, and most people don’t understand what’s happening to them. You fell off your bike, and you weren’t wearing a helmet, and you haven’t been quite the same since. You might go to your doctor. They might order a few tests, but brain injuries do not always show on a MRI or CT scan, or by the time a doctor orders it, the inflammation that the images detect has subsided, and you probably start to feel just a little bit crazy.

You don’t feel the same. You can’t think as clearly as you did before, but your doctor does not see anything in your scans. YOU FEEL LIKE YOU’RE GOING NUTS. Then, you get depressed. No one believes you. Your doctors are telling you there’s nothing wrong. Your spouse doesn’t understand what’s happening to you. You get depressed, and you don’t feel like life is worth living.

Folks, it’s time to understand that you aren’t alone, and no matter how you received your injury, you have an injury. It’s an unseen injury, but you aren’t crazy, and you deserve and need to get help, cognitively, psychologically and physically.

Ray Easterling, former Atlanta Falcons defensive back, died from suicide this weekend. He suffered from memory issues, headaches, dementia, and other health issues.

The NFL is being sued because it is believed that the league was aware that continuous concussions were causing these injuries, but they did not make players aware of the risks, and in some cases denied players ongoing health coverage to help with their medical problems (http://msn.foxsports.com/nfl/story/Ray-Easterling-death-ruled-suicide-Atlanta-Falcons-041912).

http://www.youtube.com/watch?v=pJCEbHJ1oBY&feature=fvst

In 2007, there was a fund created by the NFL to cover medical costs of retired NFL players, however this fund does not cover older NFL team players, and they do not choose to cover everyone’s costs. There is a panel that decides whether or not a former NFL players medical costs will or will not be covered. (http://www.nytimes.com/2011/02/21/sports/football/21duerson.html)

For information on the 88plan:     https://www.nflplayercare.com/Default.aspx

Another great website regarding medical assistance for former NFL players:  http://www.gridirongreats.org/

It is important to understand that the name used for the brain injuries that these football players had is Chronic traumatic encephalopathy (CTE), but this is the name of a disease related to chronic brain injury, either TBI or MTBI.

Other NFL players that have committed suicide after brain injury (CTE):

Andre Waters (2006)

Dave Duerson (2011)

Rick Rypien (age 27)

Michael Current

Shane Dronett

Corwin Brown (suffering from brain injury, attempted suicide, but luckily survived)

Owen Thomas (COLLEGE FOOTBALL player with Penn State had the same injury as the NFL players above).

Please note that the above football players lost their lives, but thousands of others are living with TBI and MTBI, and are at risk.

It is also important to note that it is not just football players, but cheerleaders, boxers, martial artists, kick boxers, soccer players, etc that can also receive these injuries. It’s also important to understand that something as simple as being in a car accident that causes whiplash can cause this injury.

It’s really important to spread the word regarding how this unseen injury is impacting people in their every day, and to understand that if you experience things that just aren’t right for you (unexplained headaches, nausea, memory loss, fatigue, visual or hearing disturbances, attention problems, etc…SEEK HELP. You might be wondering what your next step is after you have been told by a doctor that nothing is wrong; call your local hospital and ask about neurocognitive testing with a psychologist or a neuropsychologist. In most cases, your insurance will cover this type of testing, but you might need a doctors referrel.

In the end, DON’T GIVE UP. YOU ARE NOT ALONE!!

PLEASE, if you are experiencing issues that you don’t understand and need help: LEAVE A MESSAGE here or you can also contact the http://www.biausa.org (that’s the brain injury association).

I really recommend online support groups. It’s AMAZING to talk to people who are LIVING with the same types of issues that you are.

If you are experiencing suicidal thoughts, call 1-800-suicide (1-800-784-2433) or you can go online to crisischat.org. OR go to your nearest emergency room.

In the end, you are not alone, and even though your life has changed and it’s not easy, you can get help and you can learn ways to live and adjust to your injury.

GOD BLESS!

Here are a following broadcasts regarding concussions and mild head injury in sports:

Football:

http://www.youtube.com/watch?v=VfO6Yyr4dmw

http://topics.nytimes.com/top/reference/timestopics/subjects/f/football/head_injuries/index.html

Soccer:

http://www.youtube.com/watch?NR=1&feature=endscreen&v=klESLYtbRe8

Sports in General:

http://www.youtube.com/watch?v=T3FLRDxbLXg&feature=related

Head trauma related to the pituitary gland and how head trauma impacts your hormone function:

http://www.youtube.com/watch?v=Q8DXiCr3-jE&feature=related

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 🙂   )

Drowning my sorrows:

Well folks, there are those days that make you stop and wonder why you couldn’t have been born a Romney.

It’s amazing for me to think that I should be one of the 1 billion people in the world that should have everything handed to me on a silver platter, but I wonder why I wasn’t.

I don’t know where this sense of entitlement originated. My parents were poor. I never had extravagant things growing up. I was happy until the age of 15 wearing my cousin’s hand me down clothing.

After that point, I wasn’t happy with anything. I was a teenager.

So, why is it today I feel an absolute sense of envy of all of those people I believe have more than me or who have never struggled. Is it human nature? Is it me?

Today, I got the news that my younger cousin is graduating from medical school. I am extremely proud of her. She’s always worked really hard. She is smart, beautiful talented, but I have this OVERWHELMING sense of envy.

I’ve wanted to go to medical school for the past 8 years, not because of the lucrative income, but because I’ve wanted to make people BETTER.

I’ve wanted it more than anything. I’ve worked HARD to try to get it over the past 7 years, and just when it seems like I was going to make it, I was given EPM.

I went back to  school full time, worked full time, while taking care of my family just so that I could become a doctor.

I took out TONS in student loans, sacrificing vacations, time with my family and developing friendships, with the goal to become a doctor. I wanted to make a difference in people’s lives.

Last June, I was scheduled to take the MCAT. I was facing the prospect of FINALLY making it, then I was told that I had a pituitary tumor that needed to be removed.

The pituitary tumor was going to be the ANSWER to all of my past medical issues. It really answered everything, and once I had it taken out, there would be nothing stopping me. I would regain some of my health and within a few months I would be able to take the MCAT.

Of course, I knew that by removing the pituitary tumor, I wouldn’t gain absolute perfect health. I still have ongoing issues with autoimmune problems (caused by Cushing’s Disease), but I’ve always been able to work through my going health issues to do what I need to do. My health wouldn’t get worse.

All of this has changed when I developed EPM.

I am still working towards the goal of getting into medical school, but now that goal seems ridiculous, and this time I feel like I might not be able to recover to the point of where I was before.

I struggle with working 5 hour shifts at my current job, working less than 20 hours a week! If I struggle with working my current job, then how am I going to make it through medical school and residency. I don’t know, and it’s so distressing to realize that this dream is fading from my life.

I try to push the negative doubting from my mind each day, but any time I really think about it,  I know that I’m climbing a mountain of ice while wearing roller skates.

Still, I’m pushing blindly forward with my goal, but I know what I’m facing, and I don’t know how I’m going to overcome these odds.

Because of this, I’m drinking away my sorrows tonight. I know that this isn’t going to solve anything, of course, but today it seems like everything I’ve worked towards in the past 7 years has been washed away, and I’m looking at a vast empty space.

(Let me clarify this: I don’t drink alcohol. I get sick if I do, so by saying I’m drinking away my sorrows, I mean I’m having a beer. Yeah, I know…it’s pretty pathetic, but maybe it will help me to feel better.)

I am wallowing in self pity, and I’m wondering; WHY? Why is it that I face such adversity in my life? It ISN’T FAIR!!!

I grew up impoverished, with an abusive, alcoholic father and a victimized mother. I was assaulted when I was 18 and became a single parent. I was in an unfortunate relationship when I was 22 and placed another child for adoption. I found and loved the person I believed was my soul mate, but he died suddenly. After years of handling everything on my own, I found my significant other, but our relationship has been anything but perfect, and after overcoming all of those obstacles, I became ill. Once I get the answer as to why I’ve been sick for so long and have a possible treatment, the surgery for it leads (through the incorrect treatment of hyponatremia) to my developing possible permanent brain damage. Instead of getting better, I become significantly disabled. LIFE ISN’T FAIR!! My life isn’t fair.

WHY THE F__K DO THESE HORRIBLE THINGS HAPPEN TO ME? WHAT DID I DO TO DESERVE THIS LIFE?

Just when everything felt like it was about to fall into place, my life was turned completely upside down.

The only good thing about getting knocked down so many times, is that you’re an expert at getting back up; however it’s never easy.

Tonight, is one of those days when I’m stumbling back down.

I love my cousin, and I’m happy for her success, but I have to stop and wonder; Why can’t I ever get a break?

Am I so far off course in my life that God has no choice but to slam me to the ground every chance He gets?

I wish I had the answer to that.

I should be celebrating my cousin’s success, but instead I’m wiping away tears and drinking away my sorrows. (AND I CAN’T EVEN REALLY DRINK AWAY MY SORROWS BECAUSE ALCOHOL MAKES ME SICK…isn’t that pathetic…)

I hope this finds you in better health than me, and in a position of less envy. Cheers!

 

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!

My Videos:

Hey folks, this is just a snippet of the movement issues that I have on a daily basis. These issues become extremely obvious after I developed CPM/EPM.

Let me know what you think when you have time. Hopefully, you can share if you have the same type of experience.

 

http://youtu.be/lPc3XHXlims

http://youtu.be/SawcRiIEGEI

This last one it’s hard to determine what’s moving because I’m shaking so badly while I’m taking the video. The key thing to look for is that my thumb is twitching, and I think this also shows the pill like rolling that people with early forms of Parkinson’s develop. I’m not a medical expert, so I’m just guessing at this last part; however, these types of jerks did not present until after I developed EPM.

http://youtu.be/FXM5CN6wID0

Going a little bit Crazy:

I have hit a stress maximum today. I’m sure you might understand what I’m talking about, maybe not. If you have a brain injury or CPM/EPM, you might be able to relate more to this.

No matter who you are or where you come from in life, you are always going to experience good and bad days. That’s just how life works, but when you hit that wall where you feel like you can’t handle one more thing, what do you do?

If you’re like me, right now, I have a tendency to run away. Truly, that’s what I like to do. I will pack my bags and leave. I won’t even have a certain agenda in mind. It just sounds better, feels easier than dealing with the problems at hand.

Guess what? It doesn’t work.

You might feel better for a little bit. In my case, it doesn’t work at all.

Here’s why: I have a brain injury, so putting things out of my mind…well that’s easy. It really is, but keeping them from erupting at any moment that’s harder to control.

Let me give you a few examples:

Today started off on a very positive note. I took an Ambien last night, so I slept well. I slept in pretty late. And as with every morning, I wake up completely empty headed, like Dora from Finding Nemo.

I greeted my 6 month old puppy, Toffee, with enthusiasm and let her out of her cage, gave her several minutes of undivided attention, placed her on the floor and walked into the kitchen. She followed.

Without even thinking about things, I already felt overwhelmed. Toffee needed food and water. I needed to take my medications. I knew I had a list of things to do, but couldn’t remember anything that I wanted to do today. There was a missed call and a message I needed to listen to on voice mail.

At one point in time in my life, I would have been able to handle these tasks in a moment…boom, boom, boom, done, done, done. Now, I look at the flashing light indicating a message, watch the excited puppy, look around my kitchen in a confused look, not knowing exactly what I needed to handle first or next.

I pick up the phone to dial my VM. I clean out the puppy’s dishes and give her water.

The VM was from my cognitive therapist’s office asking if they could move up my appointment to 10 am or 11am. Ha, it’s already 11:30. The message asked me to call them back to let them know. Now, I feel guilty. Maybe I shouldn’t feel guilty, but I do. My therapist might have been able to go home early, have an extended lunch break if I had called their office back, but I didn’t even get out of bed until 11:30…so now what? Do I call their office back and explain? Do I explain when I go in?

I decide to put it out of my mind and get back to what…..what did I need to do?

(Truly, that’s how my thought process works.)

Excited puppy….she’s looking for love, attention..oh and food. Gave her a scoop of food. Began to walk out of the kitchen.

Wait, I needed to do something else. Medicine.

Started to pop open pill bottles…I think I took all the important ones. I need to eat something with my medications or I get an upset stomach, so I had a few chunks of honey dew melon and half a muffin.

Then I sat down, I was in a complete oblivion as to what to do next.

Hmmm…my cognitive therapy appointment was at 3. Tom was in the shower. My 3 year old daughter was asleep. The puppy was getting extended cuddle time because I had NO clue as to what to do next.

So, I experienced a time warp…this is basically where I apparently don’t do anything for an extended period of time except stare in to space. My mind is completely blank. Around 12:30, I realized I hadn’t really accomplished anything, so I took a shower. Apparently, I got dressed, and I went on Facebook and checked out my email.

When I got to my email, I realized: Oh, shit. I’m hosting my little sister’s baby shower! Yes, I am. It was almost simultaneously that I realized I also have to leave town Sunday night. I have to work Sunday night, and that makes for a really long night when I have to drive at least four hours after I’ve worked a 5 hour shift. And then I took a double dose of the oh, shit factor because I realized Saturday is when we’re doing Easter dinner with my mother-in-law and family. Guess who’s in charge of that?

These are just a few of the things that SUDDENLY popped into my head around 1:15. These are things that would have been at the forefront of my mental processing before I had brain damage. Now, these things magically disappear each night when I go to sleep and by the time I wake up in the morning, they’re still not there.

Ok, so my significant other brought in the mail, and it included several things I had ordered for my sisters baby shower, so this took my focus.

I’ve hosted baby showers before, but this was before my injury. I had no problem hosting things previously, but now I have an extremely difficult time visualizing what I need to do, and I feel the pressure.

(To give myself credit, about 6 months ago, I asked my Mom if I should throw the shower, but she told me everything was taken care of. About two weeks ago, I was told that this wasn’t exactly the case, and I volunteered to do it. Let’s face it, people tend to do things in May and June and this means that if you haven’t sent out invitations in February or March, the likely hood of people  going is greatly diminished..so now, I’m a bit frustrated and a bit rushed to get everything done. Ugh.)

So, I’m looking at the decorations and invitations that just arrived in the mail, and I don’t like the colors in either. My sister is having a little girl and the primary colors of the decorations and invitations are yellow, aqua and brown. SO, I spend the next hour searching online for different colors that aren’t dominant in the decorations…a light green and pink.

Because I’m thrifty, I keep going back and forth to different websites finding the decorations that I want, comparing prices and types of things that each vendor has. BUT here’s the problem, because I have issues with concentration, memory and focus, I can’t keep the prices and types of things from each website  straight. (Insert huge sigh).

I look at the clock it’s 2:15. Tom is taking my daughter to the doctor. I have to meet with my cognitive therapist, which I’m looking forward to. I haven’t had “lunch”, and I have to be at work at 6, so how is the rest of the day going to work?!

Do I have enough time to go through a drive thru on the way to my appointment? I have half an hour? What am I going to do after my appointment? Should I eat after my appointment? I have to work from 6pm to 11pm, so I’m not going to have a chance to eat dinner. Eating after my appointment would make sense. But, I also need to run to Party City to see if decorations are less expensive there. I get coupons for them, so I might save more money if they have the colors I want.

It is through this mental chaos that I remember two things: I am supposed to mail my MCAT accommodations request at the post office today, and I am supposed to bring my cognitive functioning test results to my appointment today.

FREAK!

It’s at this moment that I’m about to blow a mental gasket. I CAN’T REPROGRAM THE THINGS THAT I WAS GOING TO DO AND WHAT I NOW NEED TO DO!!! To add to my absolute moment of frustration, I can’t stop dwelling on the fact of how I once was able to do all of this stuff without any issue and now can’t, simply can’t remember these things each day.

To me, they aren’t little things. They’re important things. Things I needed to do today, but what happened to my mind during the first 3 hours of the day?

Ok, so now I have to rethink everything, but I CAN’T. So, I do the next best thing, I just DO whatever.

I go to the bedroom and find my test results. As I’m putting them in the proper order, I end up knocking over a stack of papers onto the floor. I look at the bed and realize I have the baby shower decorations scattered across it, but I don’t have time to put them away or to even think about where to put them…so I leave them.

I’m at the front door, when I realize that I forgot the MCAT accommodations request. I grab that, and as I’m walking out the door, I realize I left my purse on my bed.

When I get to my car, I still have no idea as to what I should do next. Lunch? Post Office? Do I have enough time to do both? I’m really hungry now.

I pull out of my condo complex. Which way do I go? One direction will lead to the closest fast food restaurant, the other will take me to the post office.

Decisions.

I pull towards the post office…the entire time thinking about if there are any other fast food restaurants along the way. There aren’t.

I get to the post office and successfully drop off the letter.

I have exactly 12 minutes till my appointment time, and it takes about 15 to get there. Pressure.

I pull into the cognitive therapists office. Get out of the car, lock the doors, get to the door, and then realize I left my testing packet in the front seat. I curse. Return to the car, get my packet and return to the office for my appointment, on time.

It’s at this moment that I feel pretty good.

Remember, I like the cognitive therapy. I really think it’s going to help me.

I explained to Angela that I’m feeling so frustrated because I truly can’t remember what I’ve posted about previously. I don’t remember. I also explained how I really want my blog to be helpful to other people.

So, we looked at it, and she gave me homework. I’m supposed to go through my posts and make a record of the topics that I’ve posted about, kind of like an index for me to reference to. Technically, I’m not supposed to post to my blog until I’ve done it.

Yeah, but here’s the deal: it seems like an overwhelming task. I’ve made over 40 posts. I have to “skim” over 40 posts and make a record before I make another post. (I haven’t skimmed over the 40 posts or made a record. Yes, I’m not following instructions).

And God love her, she gave me more work to do besides that. I have several work sheets that I have to complete before my next session. My next session is next Wednesday.

I really think the assignments she’s given me will be helpful, but I have Easter dinner to host. I have to work. I have to make such a long trip next week. I need to get the baby shower invitations in the mail. Oh, and I have finish my taxes.

By the time I reach my car, my mind is a complete blank again. What to do? Go home? Get something to eat? Go to Party City and then get something to eat? Go get something to eat and then go to Party City?

It was 4:15, and I had to be at work by 6.

I sit in my car for about 10 minutes not certain about what to do next, and then I do what I did earlier. I just start driving without any certainty about what I should do or will do, but at least I’m doing something.

I stop at the intersection. I turn right. Looks like I will be heading to Party City.

I took a wrong turn on the way, but this wrong turn took me to PennStation.  Fate, right. Yep, that’s what I had for lunch.

By the time, lunch was over, it was 5pm. I was at Party City by 5:15. The entire time I’m stressed because I have to be at work by 6. It’s rush hour. Will I have enough time to canvas the store and get to work?

It was the moment that I was parking my car, that I remembered: I have a merchandise credit for Party City for more than $40.00. It was also at that very moment that I realized I have NO FREAKING idea what I did with it. UGH!

This annoyance popped into my head and over took everything else.

Party City does not give you a little plastic card for your merchandise credit, they give you a paper receipt. I got a new purse after I made the return. It was a paper certificate.

I had absolutely no memory of it until today when I pulled into their parking lot. It was worth more than $40.00. FREAK. FREAK. FREAK.

Oh, yes folks. I have no idea where it is. It’s not in the papers that I transferred to my new purse. If I saw it at any point before this moment, I probably looked at it like trash and threw it away, and this is BUGGING me to death.

I am absolutely certain this is the reason Party City uses normal receipts as their merchandise certificates because the associate cautioned me: Don’t Lose it. If you lose it, there’ s nothing we can do.

I was tempted to just leave due to my absolute annoyance, but what if their prices were better than online? I would still be saving money.

After a quick investigation, I convinced myself that their prices were indeed better, and have determined that now I have to find the missing merchandise credit/receipt.

As I made it to work by 5:55, I felt exhausted and relieved, but that was short lived because my stats from work weren’t great. I have a commission based job and finding out how poorly I’ve performed this week, really put the pressure on to try to make things better tonight.

Things did go better tonight, but they weren’t good enough, so as I was driving home, everything that I have to do and accomplish in the next few days, has become seemingly impossible.

I really don’t remember all the things that I need to do. My mind is a blank. I think it’s selective processing to protect myself from a complete meltdown.

For instance, my daughter will need to have an endoscopy because of ongoing stomach issues. I forgot to pay the electric bill. I don’t think I paid the mortgage yet either. I really can’t remember. I need to finish getting things for Easter dinner. I need to make a list of things to do for the baby shower. I need to refill prescriptions. Make list of my appointments and what I’m going to discuss.

Oh, I also feel really guilty because I’ve been trying to get salivary cortisol tests submitted from my endocrinologist, but I will remember to do the test one night but forget it the subsequent night. The tests have to be submitted within a week or they’re not valid.

Well, I did the first salivary test Monday night, but forgot to do it Tuesday, so I went ahead and did it in the morning when I remembered that I forgot, and mailed it. Because I knew it would have to be repeated, yet again, I lied and said I did it at the right time. UGH. Now, I’m feeling guilty, but I would have felt equally guilty if I had to call and tell them I screwed it up again. So, do I tell my endocrinologist what I did? Will I have to repeat the cortisol testing again?

I also have to make several return phone calls and emails, but it just seems like there is soooo much other stuff that needs to be done that I really can’t stop to think of those things either.

Tomorrow is my day off, and I am at a complete loss as to what I should do next. There’s so so so much more that I am not remembering, like making a return to Kohl’s, going to the gym or meeting with my personal trainer…oh, the list is never ending and always expanding.

It’s now almost 1am, and instead of venting, I could have accomplished a half dozen things that I should have done, but my little girl is running a fever. I have a headache, and I feel the urge to delve into a pint of my favorite Ben and Jerry’s.

I’ll figure everything else out tomorrow (or in my case, later today 😉

And that’s what it’s like living with EPM. You spend a part of every day feeling just a little bit crazy.

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

March 19, 2012

Today has been one crazy day. I woke up in the middle of the night last night with an unbelievable sense that I needed to vomit, but I was extremely tired, so I rolled back over and went to sleep.

I swear that is what happened, but I can’t remember for certain because it feels like it might have been a dream.

I’m just not sure.

I woke up this morning with this nagging abdominal pain, and I contemplated going to the ER for it. I literally thought, “Wow, I haven’t been to the hospital in awhile. Maybe I should go.”

Now to be fair to myself, this abdominal pain has been coming and going for the past several weeks, probably a month or longer. I truly can’t remember for certain, but it’s been a long time and it’s just gotten to be horrible. Not because it’s excruciating, but because it’s continuous and random.

It’s so freaking frustrating to the point of where you would love to cut your abdomen open with a butter knife and dig around in that spot to take whatever it is that’s causing it out.

I’ve never had a toothache, but I’m really certain it would be like that. This deep throbbing, aching pain.

SO to have that continuously happen and then to awaken from a dead sleep with extreme nausea, well, I thought maybe today would be a good day to spend at the ER….but I didn’t go.

No, I couldn’t bring myself to spend at least 3 hours or more sitting in an uncomfortable, being prodded with needles to only be told, “we can’t figure out the problem. You aren’t dying, so here’s some pain meds. Follow up with your doctor tomorrow and come back if it gets worse.”

Instead, I decided to WALK to a nearby park with my 6 month old puppy and 3 year old daughter. The park is only a mile away or just over, but it seemed to be 3 or 4 miles at least. My daughter loved it. The puppy actually loved it, and I felt proud of myself for doing it. And then I made it back home and crashed for an hour before I had to leave for work.

Here’s the thing..this was a really crazy thing to do. I mean I didn’t feel well, and my poor puppy literally plopped on to the ground and refused to walk further about a block into the walk, so I had to start carrying her. She’s pretty small, maybe 6 pounds. I carried her for about a block but then my hand and arm started cramping.

It started as a dull ache and it built to this fairly excruciating pain. My arm became stiff and sore. The cramping became intense to the point that I wasn’t sure if I was going to be able to extend my arm. The same type of feeling was moving through my hips and right leg as well.

I wondered if it is all related. Is the abdominal pain, the nausea, the cramping all being caused by the same problem? I’ve had the cramping in my hands and feet for months now, but this is becoming a daily problem, and it’s becoming so severe that I wonder what I’m going to do in the future. How am I going to get past this?

So if you add this to the abdominal pain, the ER sounded like the right call this morning, but I didn’t go.

I’m certain that none of the doctors in that are in the local hospitals will be able to figure this out. I don’t know if it’s related to EPM. I don’t know if it’s related to one of my autoimmune issues. I don’t know if it’s purely random.

The only thing I do know is that this these issues are not getting better. I don’t know what I’m going to do. I don’t know how I’m going to live past it.

I guess it’s like everything else. You do it one step at a time.

It’s just like the walk I went on this afternoon. I was very much like my poor puppy. By the time we got to the end of the parking lot, my hips were cramping. By the time we got a block away, I felt like I could join the puppy, sprawled on the sidewalk, four legs to four corners and wait for someone to come and pick us up. I actually contemplated calling a friend to come and get us, but I kept saying to myself, “we’re almost there. we can do this.”

We didn’t make record time, but that’s okay. It wasn’t a race. Eventually, we’ll get to where we’re going. It’s all a matter of putting one foot in front of the other, and when things suddenly start to get more difficult, we keep on going because we can.

Don’t worry if you start to lag behind a little. I’ll walk beside you.

 

02/23/2012

So today has been pretty uneventful. I thought I was going to take a friend out for her birthday, but that will have to wait.

Last night, I didn’t make any posts. It was just one of those days. I was tired. My sinuses felt they were going to explode, so my head hurt so badly, but I managed to make it to work.

Prior to my injury, I was able to put in a 80 hour week. I was a bit nuts by the end of a 16 hour shift, but I could do it. I was able to come home, crash, and get up and do it again 8 hours later.

I was doing that WHILE I was fighting APS, endometriosis, and the un-diagnosed Cushing’s Disease.

In other words, I’m not a slacker. I work hard. I always try.

Last night, I drove home after a four hour shift, and I wondered how am I going to be able to do this? My head felt like it was going to explode. My hands were so stiff and sore. It’s hard to move my fingers, and I didn’t spend any time typing except for the time at work. I’m facing huge challenges getting through four hours of work.

How will I survive as a doctor if it’s killing me to put in a four hour shift?

Even now, my fingers ache. My wrists hurt. The stiffness is difficult to deal with, and I have to wonder what’s going to happen next? Is this going to get better?

My medical back ground says: nothing gets better with age.

My hope says: there’s 60 year old’s running marathons. This is only temporary.

I guess that’s what we are left when we start to lose our health, fear of the unknown.

A dear friend of mine reminded me when I was first injured, focus on the positive; your mind is important in the healing process.

I know he’s right. There are so many inspirational stories of people that have faced great adversity and adapted and over came their challenges.

I always find it amazing as to how many people actually do this. The following is a popular true story of a girl who, despite amazing challenges, overcame 🙂

http://www.youtube.com/watch?v=ePFKksD0XkQ&feature=related

I’m not a famous surfer, and I can’t even say I’m a famous anything..but I can relate to her message in her video.

I was put on a path to be a doctor, and after having this injury, I’ve spent a lot of time questioning if and how that will happen. I wonder if I’m going to be able to meet this goal. I wonder what my purpose is in life if it is not medicine.

I think these are the questions that a lot of people face daily in their struggles with money, health, employment, being a parent.

Those aren’t easy questions to answer, but I think if we continue to follow the path, despite obstacles that we face, we will persevere or will be directed to a new path that was meant for us.

Wouldn’t it be great if we had a crystal ball and could know with absolution what was going to happen next? Maybe it would take some of the fear and anxiety out of the surprises that we face, but I also think that it would take away the mystery.

If you are facing something that you believe you simply can’t overcome, then I encourage you to seek advice. I really recommend reaching others through online support groups.  You will find so many magnificent people who are going through if not the same thing you are, something similar.

If you are struggling with a new, unforeseen obstacle, like CPM or EPM keep your head up. Your life isn’t over. You just have a new challenge to defeat 😉 and you don’t have to do it on your own.

02/21/2012

Ok, so guess what I forgot to do today? Yes. That’s right, get my lab work done. Well, to be honest, it wasn’t really a matter of forgetting, but a matter of not wanting to get up at 7:30am when the alarm went off.

Apparently, I just can’t get up after 4 hours of sleep after I’ve taken 10mg of Ambien.

I’m exhausted, and I’m ready to start my infusion of caffeine to get me through the rest of today. I swear it would be awesome if I could just get my hands on IV caffeine. I need a 24 hour slow drip.

I bet I wouldn’t be so tired if I remembered to take my thyroid medications every day. That’s just a thought.

So, as I said, I missed my 7:30am labs, but I did make it to my 12:30 halter monitor replacement. This is being done for the cardiac testing. I was having major variations in my heart rate about a month ago, and between the cardiology office not sending the request and my not being available, I’m just now having the test.

Of course, all of my irregular heart rates have subsided, and I think it’s because of the increase in my thyroid medication. I’ve been taking an increase in thyroid over the past two weeks. Since then, I’ve definitely had a decrease in cardiac episodes.

Well, it will make for a very uneventful report, which I’m sure my cardiologist will read as that I have absolutely no issues with my heart. She would be right if my hypothesis surrounding the thyroid medication is correct. It would mean that my cardiac episodes are being caused by hormone fluctuations.

It’s truly amazing how complex the human body is.

Today has been pretty mellow. I still have to go to work which I’m sure will cause the severe headache (like the one I forgot to mention last night), the mild nausea, the fatigue, the tremors, and it will cause me to focus on the fact that I’m so much slower at everything than I was previously. It’s over all depressing, but I can’t not work. You might be facing the same predicament. You’re sick and you have to work.

The most obvious issue that I had today was when I went to have my monitor replaced.

I was supposed to turn in a tracking sheet for the “events” and medications from the previous 24 hours. I SWEAR I put the paper in my purse. I SWEAR I didn’t take it out. So, I sat in the waiting room sorting through my purse over and over again. I couldn’t find the paper anywhere.

I was becoming more and more anxious over the fact that I wasn’t going to be able to turn it in. I did have one period of chest pain from the day before, but I couldn’t remember what time it was that I had it. Was it in the afternoon when I was laying down or was it when I was falling asleep at night?

I HATE not being able to remember these things. I can’t keep them straight any more. So, I decided I wouldn’t write anything on the paper. But, I couldn’t find it anyway. (She didn’t ask for it, and I didn’t remember to ask her about it, so I guess it worked out).

When I was getting ready to leave the nurse asked: so, what’s it doing out there?

My response: oh, it’s beautiful and sunny.

Nurse: So, it’s stopped raining?

Me: It’s gorgeous. It’s not raining. Have a great day.

Nurse: thanks, you too.

I left and walked to the front of the hospital. It wasn’t sunny. It was sprinkling. It was freaking cold and windy! It was extremely windy. If you told me that I was in Chicago off the lake, I would have believed you.

What was I thinking?! What alternate universe did I go through? I SWEAR, it was warm and sunny when I went into the hospital. I didn’t even bring a jacket with me. I don’t remember being cold when I went to my car, but I must have been because the thermostat read 42.

The other thing that’s been “bothering” me is that I no longer have the mental capacity to listen to the radio while I drive. I have always loved listening to music while I drive, and even more so, I love to sing to my favorite songs. Yes, I’m a car performer.

Due to my over whelming shyness around people, I really don’t sing any where but the car, but that has changed.

Listening to music while I drive has become an impossibility. It’s hard enough to concentrate to what’s going on the road with the music off now. It’s funny because my mind is becoming like a classic Seinfeld episode. I have completely random thoughts going through my mind a mile a minute with little or no connection.

I was driving down a back street on the way home, and suddenly I was looking off on the side of the road staring at a sign. When I realized what was going on, I was able to veer back into my lane. Thankfully, no one else had been in the opposite lane.

I HATE confessing my ongoing weaknesses. I’m super independent, and to think that I might have some “major” issues that need to be addressed eats at me.

My significant other will read this and he will freak out and that will lead to a confrontation.

Yes, I have officially turned in to my 85 year old grandmother. I have never felt so akin to how older people feel; the loss of attention, the fear of losing their freedom, not being able to remember where their glasses or keys are.

This brain injury has put me into the region of 65 to 85 at the age of 34, and that is terrifying.

I wish I had words of wisdom for you as I write this: Keep your chin up, it will get better or something of the like, but with absolute honesty I can’t say that.

The only thing I can say is: you aren’t alone, and don’t just “deal” with it. You need to be proactive and try to get help. I’m going to start cognitive rehabilitation in March. I’m really looking forward to it. I pray that it’s not just coping mechanisms but REAL treatments that will help to rebuild or strengthen areas.

I’ll complete the rest of this post tonight, but as for now, best wishes!

 

02/20/12

Today is one of those days. I’m actually not sure what I mean by that. It just sounded good 🙂

I’m kind of going to create this section to document some of the things that have been happening to me. I guess a journal of sorts.

It really isn’t going to contain a lot of relevant facts regarding hyponatremia, CPM/EPM, etc, but what I’ve been experiencing with it. I hope you will be able to gain some of understanding how this disorder effects your daily life.

Let me just stress, compared to some, my issues are absolutely minimal. I watched a video on You Tube yesterday of a person who has CPM, and she has the complete body paralysis. It was pretty horrific. I pray none of my readers ever experience this. I pray that if you’re reading and sharing my blog that we can avoid this happening in other people.

So, it’s only 2pm where I live. I’ve only been up for about 3 hours. Yeah, I know. I really did sleep until 11:30 am. However, I went to sleep at 3am, so it’s really not that bad.

I’m able to work part time, but my employer adjusts my hours. This week my hours are later, and this has caused my sleep schedule to shift a bit.

I normally can’t make it through a day without a HUGE iced tea. I don’t drink coffee, so tea is my main to only source of caffeine. However, if I’m working late, and I drink the tea to make it through my four or five hour shift, I have a hard time falling asleep after that, and that’s what happened last night.

So, last night before I went off to slumber, I had reminded myself three times that I would not have to go to have my labs this morning as planned, and that I would have to cancel that alarm this morning. I also reminded myself through out yesterday that I was going to have to go to the doctor to have the heart monitor attached. (have to do a 48 hour heart study).

At 7 am, guess what woke me? Yep, it was my alarm for my labs. Did I forget to cancel the alarm? Yep.

Turned that off and went back to sleep.

What woke me up at 11:30am? My alarm telling me that I had an appointment at 12:30.

I was completely surprised by this. I did not remember it. I did not remember, remembering it through out the day yesterday. Oh, and that reminds me, I have to have it reset tomorrow at the same time. And the lab work that I didn’t get done this morning, I have to do around 7 am before I have the monitor replaced.

UGH. I’m going to post it now, I will probably forget it and remember it a dozen times today, but forget it again by tomorrow morning. That’s just the way things go.

One thing I noticed this morning as soon as I woke up and rolled over to turn off my alarm, my hand was shaking. It was that lovely, can’t hold my hand still and trying to press the right keys on my cell alarm morning.

So, one of my neurologists suspected that my tremors, weren’t related to EPM, but were related to caffeine. I guess since I hadn’t had caffeine at that point, he would suggest they were from caffeine withdraw. 😉

It’s a beautiful afternoon in Dayton at this point in time. It’s gorgeous and sunny. My sinuses aren’t killing me. Besides the shakes, the memory, and the numbness in my hands and feet, I feel completely normal.

I won’t publish this post until later because I want to kind of give you a “full” account of what a good day is for me.

Ok, so it’s later.

Did anything else happen?

I had some issues with aspiration. Apparently, I can no longer walk and drink at the same time. Truly, if I’m in motion, drinking is an issue, and I aspirate.

I had to work tonight, and after 2 hours, my fingers became stiff. It hurt to type, but it wasn’t unbearable. They are still stiff and achy. My legs are also stiff because I had to sit for so long at work.

I had issues with memory, but that’s becoming the normal.

There you go. That’s a pretty good day for me. Tremors, memory issues, choking, stiffness and pain.

I hope that one day, more people who have cpm/epm will post some of their symptoms. (hint 😉 )

 

02/17/2012

This week I had yet another appointment, and this appointment has stuck with me the rest of this week.

First, I want to apologize for not posting more recently than this. If you have CPM/EPM, you will find that your life seems to be full of the unexpected. You will find that there are days that seem normal and days that you wonder how will you be able to live the rest of your life in this manner.

It’s exhausting. It’s frustrating. It’s unfair.

It seems like everyday is chaotic and for someone who used to be so focused and moderately organized, this is driving me freaking crazy!!!

IT’S STRESSFUL!

SO, now I’m starting yet another category for my blog, but I still have to go back and add to hyponatremia, to CPM/EPM, and to my story!!! However, what I experienced this week needs to be addressed before I forget it, and it has really consumed me, so I feel I have to write about it.

C’est la vie!

This week I traveled 4 hours to meet with a neurologist who is a movement disorder specialist. I also had a MRI and something else….what was it. For real!! Another five minutes gone to trying to figure out what it was that I actually did while I was there. I only had three appointments. Oh, yes, the skin biopsy.

I thought I was going to go to the neurologist to get a TREATMENT for my tremors, jerks, shakes, twitches, spasms, etc. In other words, my neurological problems with movement.

I guess this is where I made my mistake. I had already met with a neurologist who is treating me for EPM, and she was sending me to get treatment for my EPM movement issues. She told me that she was sending me to a movement specialist neurologist for this purpose. I assumed that this was going to be the reason for the appointment: I was going to get medicine for my neurological issues related to EPM.

If I thought that I was going to be examined to determine on whether or not my movement issues were related to EPM, I would have been more prepared. I would have brought materials on EPM.

Here’s the thing: EPM IS RARE. CPM IS RARE. MOST DOCTORS HAVE NEVER TREATED A PATIENT WITH THIS INJURY, and it’s not that they are stupid or trying to be judgmental, they are purely ignorant!

This doctor was the same way.

I had no idea what the true intention for this appointment was, and this set me up for disaster.

This doctor did a complete neurological exam. He was pretty thorough.

After the examination, he told me: Well, you have an essential tremor and it is not related to your EPM. It’s fairly mild, but I can give you medication to treat it. I would also like you to test for Wilson’s disease. You don’t have any of the symptoms for Wilson’s, but it is a cause for tremors in a person who is younger. I don’t think you have it, but we’ll do the test as a precaution.

Before, having EPM, I would have just nodded my head and left. I would have spent the rest of the day biting my lip and waiting to say the things I wanted to say.

I don’t know what would have been better. I really don’t.

I literally started arguing with the doctor. He told me that because my MRI images were normal that the tremors weren’t caused by EPM.

Ok, folks, you know I’ve done research. I’ve spent the past 8 MONTHS researching this injury, and my first question to the doctor was: how many patients have you treated with this? His answer: ONE!!!

I then went on to say: My MRI still shows the injury (and it does). This is what my other neurologist has told me. However, if you were more familiar with EPM/CPM, you would understand that there is no correlation to the findings on an MRI and a person’s symptoms.

The doctor didn’t cotton to my pointing this out to him.

We literally started to ARGUE.

He basically told me that he wasn’t going to have me lecture him on this, but then I explained to him that I wasn’t pulling this information from WebMD. My information comes from credible medical research documents, and that I was preparing to go to medical school.

He warmed up a little bit at that point.

He tried to explain to me that the ONE patient that he’s treated with this disorder had the Parkinson’s like tremor that is associated with EPM/CPM. He told me that he had a video that he took on that patient. This particular person had both significant injury to the pontine region as well as the extra pontine regions AND that this person’s MRI still showed the injury.

He believed that my movement issues have nothing to do with EPM. He thought they were random.

He told me that I did not have Parkinson’s, and I did not have a Parkinson’s tremor.

Okay, so what’s wrong with what he was telling me, and how could I have better handled it? How could have this appointment gone better? What should I have done?

First, I should have been prepared. Really. I’ve been to hundreds of appointments. When you have something rare or not clearly understood, you need to come ready for everything. You need to have any research that you’ve found regarding your disorder. Make copies of your labs, of your reports, of research that you have found.

I had no idea what a Parkinson’s tremor was and how it was different from the tremors that I have. I will make a separate post on tremors and how they differ. Of course, with everything that is medical, there is disagreements on what is and isn’t a Parkinson’s tremor.

Basically, if you have a tremor or movements that impact one side of the body (at least in the beginning stages) that are present when you ARE NOT moving, they suspect Parkinson’s.

The tremor that the movement neurologist suspected is something called essential tremor. This type of tremor is usually found in both sides of the body. It generally becomes worse when you are moving. For instance, if you are trying to get food to your mouth or trying to get a cup to your mouth, but your hands shake so severely that your food falls off your fork or you spill liquids from your cup, they suspect essential tremors.

Now, I had no CLUE what the difference was. I had no idea that there was a difference. All I knew was that this issue became extreme when I developed EPM.

If I was prepared for this appointment, then I would have been able to produce information regarding my tremors. I would have also been able to represent the different types of tremors that are associated with EPM.

I did not know until after the appointment that this doctor really did not know what he was talking about: EPM/ CPM can have both, either, or neither…Parkinson-like or bilateral tremors.

In other words, my “essential” tremors, are probably caused by the EPM.

Furthermore, the doctor told me that there were no reasons to think that these tremors would not be long lasting if they were indeed caused by EPM. He believed that because the MRI images were improving then my symptoms would also improve.

I can not say whether or not this is true. I would have to point out to anyone who states that because your MRI images get better does NOT mean that your symptoms will improve. Further, if your MRI images DO NOT improve, that does NOT mean that you will not improve. The MRI, at this time, WILL NOT show anything more than that you had this injury.

The doctor also tried to state that symptoms will NOT get worse after the injury has happened. THIS IS TOTALLY NOT TRUE. DOCTORS DO NOT KNOW WHAT WILL HAPPEN WITH CPM/EPM!!! They do NOT KNOW.  People do see a progression in their symptoms even AFTER 8 and 9 months.

There has not been enough research in this area to know with any certainty what will happen. I know of 4 individuals with CPM/EPM that had improvements, but after a period of 1 to 2 years, their symptoms worsened. I really believe that this is related to just normal aging.

I would compare it to my cell phone that I dropped in the toilet. (It was an unused toilet at the time). I made the mistake of turning it on as soon as I fished it out. Now, anyone who is familiar with electronics knows this was a mistake. It basically fried it. However, I did not want to go out and buy a new phone. So, I took it apart. I sprayed it down with electronic cleaner. I let completely dry out and put it back together. IT WORKED! 🙂 BUT, there were certain keys that did not work, the pound and star button. I was perfectly fine with that because I didn’t really use those buttons that much any way.

So, I was happy, but several months later, other keys started not working properly. Some numbers would repeat a dozen times when I pushed them once. Sometimes, letters wouldn’t show up.

And this is my point, truly the brain works in a fairly similar way. We don’t understand how it works completely. Medicine is really archaic in this field. However, we know as we age the body breaks down. They don’t work as well. This is true for the brain. So, if you already have an injury in the brain, yes, you are likely to see improvements, but it’s like my cell phone, you just don’t know how long those improvements will last, and you are most likely to see these areas degrade over time as your brain ages.

Getting back to my appointment:

I tried to explain that the delay in new symptoms is believed to be caused NOT BY CPM/EPM INJURY directly, BUT BECAUSE YOUR BRAIN TRIES TO REBUILD CONNECTIONS, and it is believed that these new pathways can cause the new symptoms.

Therefore, people have seen NEW symptoms months and EVEN years after the injury. The doctor I saw agree with this, but he felt that new symptoms would not be seen after 1 or 2 months after injury.

See this article for a description on how this isn’t true:

Journal of Clinical Neuroscience 19 (2012) 179–180

And this one:

Journal of  Neurology (1995) 242:450-454
© Springer-Verlag 1995

Regarding the types of tremors that are experienced in CPM/EPM injuries, most are considered Parkinson’s like, resting tremors; however there are also studies that show that both types of tremors can be present, parkinson’s and tremors that worsen with movements.

Here is information from Wikipedia http://en.wikipedia.org/wiki/Central_pontine_myelinolysis:

 Permanent disabilities range from minor tremors and ataxia to signs of severe brain damage, such as spastic quadriparesis andlocked-in syndrome.[14]

Okay, the following is what I have. I do have a bilateral resting tremor that gets worse with movement:

A 56-year-old man developed drooling and bilateral hand tremors 3 weeks after correction of hyponatremia from 103 to 125 mmol/L over 14 h. He had a prominent 6 Hz resting tremor which worsened with action and mild cogwheel rigidity. Magnetic resonance imaging (MRI) showed changes consistent with central pontine myelinolysis and increased signal on T1-weighted images in the putamen bilaterally. His tremor responded well to L-dopa therapy.

(http://www.ncbi.nlm.nih.gov/pubmed/10833626)

I could go on all day quoting journals regarding tremors and EPM/CPM. Here’s another:

Rigidity was present in all four limbs, with orofacial dystonia and dystonic posture of hands and feet and with tremor in both hands.

http://dmc.academia.edu/MahmudurSiddiqui/Papers/893372/Selective_Extrapontine_Myelinolysis_in_Osmotic_Demyelination_Syndrome_in_a_Case_of_Previously_Undiagnosed_Sheehans_Syndrome_with_Recurrent_Hyponatraemia_-_A_Rare_Association

If I had been better prepared, I would have been able to bring these things to his attention.

More importantly, I showed him two videos of my tremors. He believed these videos demonstrated that I indeed have essential tremors. And I cannot disagree with this statement. I don’t know. I’m not an expert in tremors.

That said, I only recently started recording my tremors, and more importantly, I have spasms and jerks in certain fingers, in my legs, or feet, but these jerks are fleeting. So, I will have three or four twitches in my finger and there’s no way that I can record those particular movements without making a video diary of my every waking moment. I never know when these movements will occur.

This is extremely frustrating because by this point in my appointment, there was no trying to communicate with the doctor. I was too emotionally involved and so was he.

His take away message was: you’re going to be fine. You aren’t going to get worse. You are going to get better. You should try this medication to help with the essential tremor that you have, and I am almost positive that your tremors are not related to EPM. Even if they are, the medicine should help them. You do not have Parkinson’s.

Now, this seemed to be a crux in the conversation that I haven’t hit upon previously. He kept stressing that I did not have Parkinson’s. He stated that he was an expert for Parkinson’s.

I really did not understand why he kept bringing up Parkinson’s disease. I DO NOT HAVE PARKINSON’s. I did not think that I had Parkinson’s. I believe that I have Parkinsonism. Now, I’ve previously discussed Parkinsonism. From the knowledge that I have, it is any tremor that a person has, along with dystonia, and dyskinesia, and possible issues with your voice. I am not an expert on this. I know what I’ve read, and I promise to research this further and try to post on this more when I post specifically on tremors.

What’s wrong with his message:

HE HAS ONE FREAKING PATIENT WHO HAS HAD CPM/EPM. He certainly hasn’t spent the past 8 months researching every possible thing you can find on it.

He made incorrect comparison’s: Parkinson’s and EPM. People with EPM/CPM DO NOT HAVE PARKINSON’s. They have a Parkinson’s like tremor, and that isn’t even true for everyone with EPM/CPM. He did not understand that there IS NO SET STANDARD for CPM/EPM. It’s like saying someone who has colon cancer will have the same symptoms and issues as someone with esophageal cancer. It’s like saying there is only one cause for heart disease.

He was unwilling to say: I DON’T KNOW. I will need to evaluate you further. Please spend time making more videos of your issues and feel free to contact me when your symptoms change or if you have a video of something different. He didn’t even ask me when I took the videos I made.

I tried to explain that my symptoms vary in severity from day to day. Truthfully, they vary from hour to hour. Right now, I barely have any tremor at all. However, an hour ago, I did. I have twitches and spasms even at night when I’m trying to go to sleep, at rest. They make it difficult to fall asleep. I don’t have this problem EVERY night, but probably three or four times a week.

So, what could I have done?

I should have made a journal of these things. I should be keeping a daily record of my symptoms, the times, places, how much caffeine have I consumed, etc. Doctors really like data. They like it when you have detailed information for them to look at.

I really haven’t documented my symptoms and when I have them. I should be keeping more videos. I feel embarrassed to pull out my cell phone or video recorder to make these videos in public places when I’m experiencing these problems. I believe that those localized spasms that I get in my fingers or feet don’t last long, so I shouldn’t bother trying to record them.

I AM MY ONLY ADVOCATE. NO ONE ELSE IS GOING TO DO IT. You really need to take this to heart if you are reading my posts.

No one else is going to go to bat for you, and if you are willing and able, you need to make as many records as you can regarding your situation. It can and will help you out. It might help your doctor more fully understand your situation. More importantly, you can post it here on my blog and help others with CPM/EPM.

I also shouldn’t have bothered correcting this doctor when I didn’t have access to the medical journals or very good videos of my symptoms. Now, this doctor has formerly based his opinion. He isn’t going to bother to do anything else with me. If I ever need to go back to him, I will have to have a huge collection of evidence proving him wrong.

Let me stress, it’s not important to prove him wrong for the sake of being right, but because I will not get help from him unless that happens. I also won’t get the correct medications for the types of neurological issues that I have.

It’s also important to realize that it’s important to realize when you’ve lost a battle. It’s your choice on whether or not you are going to waste your precious time and health on trying to bring this person up to speed on CPM/EPM.

As more and more records become easier to access, hospitals will become able to share information on your medical history. This means that this doctor may be able to pollute the opinions of future doctors that I see, even at different hospitals, in different cities or states.

So, you really need to make a decision on whether or not you are going to spend your time and resources on “educating” a doctor on your condition.

If you choose to, I think it’s really important to “educate” him on the first appointment. First impressions make the biggest impact, and this is most certainly true for your doctors.

In other words, you need to be prepared for EVERYTHING on that first appointment. You have to have research articles on the types of symptoms and issues that you have, especially when those symptoms are rare. You need to have videos and if at all possible, personal testimony from family and friends (hopefully someone can go with you for your appointment that can attest to your issues and their severity). It’s great if you have a journal of your symptoms from each day.

You need to ask your doctors questions like: how many patients have you treated or seen with CPM/EPM? And it’s important for you to make a decision on whether or not you are going to continue to see this person if the appointment does not go well. Be prepared. Don’t be afraid to ask questions.

I’m sorry if this post was a bit repetitive. I believe that when I have something that I feel especially strongly about, I tend to repeat it. I will try to edit in the future for those type of repetitions.

For now, I’m going to retire. and as always, please feel free to write me with any questions or your personal story.

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