Friday, October 26, 2012

Walk Like A Zombie

I was watching a movie on AMC last night.  AMC has a series called “The Walking Dead” and they showed an advertisement for it during the movie.  I have always liked horror and mystery movies, but have never been a fan of the blood and gore type or zombies.  Watching that ad, I still have no desire to watch a zombie show.

Per Wikipedia, “a zombie is an animated corpse resurrected back to life by mystical means, such as witchcraft.[1] The term is often figuratively applied to describe a hypnotized person bereft of consciousness and self-awareness, yet ambulant and able to respond to surrounding stimuli. Since the late 19th century, zombies have acquired notable popularity, especially in North American and European folklore.”

Again, per Wikipedia, Based on the comic book series of the same name, The Walking Dead tells the story of a small group of survivors living in the aftermath of a zombie apocalypse.[11] Most of the story takes place in the Atlanta metropolitan area and then the surrounding countryside of northern Georgia, as the survivors search for a safe haven away from the shuffling hordes of predatory "walkers" (as the zombies are referred to in the show), who devour any living thing they catch, and whose bite is infectious to humans. The plot is focused primarily on the dilemmas the group faces as they struggle to balance their humanity with their survival against the zombie horde, and later, how they cope with members' being killed and deal with other human survivors they encounter, many of whom are dangerous and predatory themselves.

The group is led by Rick Grimes, who was a sheriff's deputy[1] before the zombie outbreak. At every turn they are faced with the horror of the walking zombies, the changing dynamic of their group, and hostility from the scattered remains of a struggling human populace who are focused on their own survival now that the structures of society have collapsed.”  As I said, it really is not the type of thing that appeals to me.

What did catch my attention was the way they were walking (??).  So many MS people describe themselves as looking like they are drunk.  After watching that ad, walking like a zombie is a pretty close description also.  Although I am not exactly endeared to being associated with zombies, I really do feel that I resemble one walking. 

Movie extras make pretty good money when they have steady work.  Since zombie movies are popular right now, I bet we could rake in a fortune!

Wednesday, October 24, 2012

Frustration, Inc

I finally have an appointment with a new neurologist. It is in January of next year and I am so excited about it. A lady in my local MS chapter recommended him and I am hoping that he will be the doctor I have been looking for.


When I talked with his office while making the appointment, the office manager asked me to mail all the copies of medical reports and procedures that I have had. I told her I would get them together and mail them to her as soon as possible. Therein lies my latest problem.


For over a dozen years, I kept up with files and proceedings for 327 Family Court clients at the law firm where I was working as their domestic paralegal. If you have ever had any type of court dealings, you know that there is endless paperwork to keep up with. I never lost any files and always had my pleadings prepared on time. I was organized and knew where everything I needed was located.


Having filed for disability, I have copies of medical records of all types covering the last half dozen years. I pulled all of them out of the various places I had put them and just looked at them. I had no idea where to start in getting them organized. My mind was blank and I felt so flustered and inadequate for the job. It is a feeling I have had a lot lately. Not only are my papers disorganized but my life in general has become so. Even the notes I take to try and keep up with everyday matters are scattered and not organized. This is so totally unlike me.


It is hard to stay organized when one's brain is so disorganized. There are days that go smoothly and days where nothing does. Some days I can get my thoughts in order and other days I have a problem remembering my own name. Some may not believe that, but I have had a few instances when I had to really think how to spell my own name. I have had times I could not remember my telephone number or address. This, to say the least, is very frustrating and scary.


It took me a couple of hours to decide that I needed to put everything relating to each doctor together, all medical procedures together, my psychiatrist's notes together and my physical therapist's notes together. This may sound like a DUH moment, but it was hard to get to that conclusion. The more I looked at all those papers the more nervous and lost I felt. So far, I have quite a few piles of sorted material. I felt really proud to get that far in the process. I realize that it is only a baby step in the process but I am happy with it.


I am always amazed at how many people do not understand how much MS affects our mental cognition. Sometimes I feel like I am becoming mentally impaired or in the early stages of dementia. Every little thing seems to overwhelm me.  I know that part of this is the fact I am getting older.  With MS, it just seems to happen all at once.


I have decided that it is good that winter is on the way and I will have much more time to get organized.  Not that I was out in the hot days of summer very much, but it is so nice to look out the window at snow (if we get some!) and do simple tasks that otherwise might not get done.  I am going to get my papers together and put them in order.  I am going to rearrange my books into a semblance of order so I can find the one I am looking for.  I am going to get my recipes organized instead of all jumbled together.  I am going to…………take a nap and worry about this tomorrow!


Monday, October 22, 2012

Just A Little MS Poem

Sometimes I’m happy

Sometimes I’m sad.

Sometimes I’m gloomy

Sometimes I’m mad.

So many emotions

What can I say

Sometimes they happen

All in one day.

It might seem crazy

The things that I do

But please just remember

I think I’m crazy too.

I often walk sideways

No straight path is found

Other times I am graceful

Not making a sound.

Sometimes my brain’s sharp

As sharp as a tack

Sometimes it is sluggish

And hardly reacts.

Somedays I can see

A tick on a dog

Other days it seems

Like I’m looking through fog.

Sometimes my nerves

Are as quiet as a mouse

Sometimes the buzzing

Could run a whole house.

Sometimes my breathing

Is managed with ease

Other times it resembles

An angry boa’s squeeze.

Sometimes I’m Rip Van Winkle

Sleeping at his best

Other night’s I could not buy

A simple night’s rest.

This MS disease

On me has taken its toll

It may have my body

But will NEVER have my soul!


Friday, October 19, 2012

Writing What I Read

My cousin and I like to write stories and poems and we often send them to each other.  We have noticed that I can find her mistakes and she can find mine.  When I am reading what I have written, I read it the way it is supposed to be rather than the way it actually is.  I guess that is true of most people.  Otherwise, there would be no reason to have proofreaders.

I have thought about getting one of those programs like Dragon Speaking.  The problem with that is I often have no clue what I am going to say.  I can take my time when typing but I don’t know if Dragon would be willing to wait on me or not.  I know some people who have lost the use of their hands and use this program and like it.  I have not totally ruled out getting something like that.

One of my blogging buddies (yes, talking about YOU, Muffie!) was walking the other day about changing out her summer for her winter clothes.  We agreed that many of the things we switch from one closet to the next will never be worn by us again.  I know that is true with me. I guess that kind of fits into the same category of seeing what you want things to be. 

One of the problems that I want to fix about myself is trying to see myself as something I am not.  I love being optimistic, but I think there has to be a good dose of reality mixed in with it. I am optimistic that there are good times ahead for me and my husband, but realistic enough to know that each year that we live will be more burdensome for him taking care of me.  He also likes to remind me that he is not getting any younger and it may be a joint effort to try and take care of each other.  Either way, it will probably be an uphill battle each day to get the things done we need to do just to have a halfway normal life.

I often try to look at me how I think others might see me.  I know that most of my family accepts that I have changed dramatically over the past few years.  Whichever person is closest to me always reaches out to help me along.  I am so very thankful for their support.  But these are not the ones I am speaking about. 

I know that each of us have noticed someone looking out of the corner of their eyes at us when we are out in public.  I really wonder what they see.  Do they see someone handicapped, a senior citizen, someone who has had an accident, or what?  I have had the urge to go up to them and say, “Hello.  Since you are wondering, I have MS.  How are you?”I don’t want to be rude, though, and know that most mean no harm.  They are just curious.

When I was in school, it literature class used to drive me crazy.  We would read a really good story or poem and the teacher would “tell us what it meant”.  I never could figure out why it could not just mean what it said.  So, when you read something I write and the words are out of place, please, just read what I meant!!


Thursday, October 18, 2012

Seeing Red

Emotions are a funny thing. We either have them totally under control or they are way off the deep end. I am plagued with the latter lately. Sometimes no matter how hard I try, they will not be tamed.


My PBA is really acting up lately. I am having a real problem not crying at everything. As I have said before, I am not sad but I just cannot seem to keep from crying. This is not the problem I am talking about, though.


Like many of us, I have a relative that is very harsh and cruel. Unlike many, my husband and I have this relative in our household and are subject to criticisms and mean comments every day. Most of the time I just ignore them. Today, however, it really got to me. I am still angry from such an incident of several hours ago.


I will get over the anger. I always do. I try to remind myself that this person has been this way all my life and is not likely to change at this point in time. What bothers me is the fact that I cannot seem to control my reactions now. Also, when I get upset and stressed out, my buzzing goes berserk and I am extremely uncomfortable. Nothing I take seems to help this and I just have to hope that as I calm down the buzzing will also and give me some relief.


I wish there was something I could take to calm me down and stop this, but I feel like I take a medicine cabinet full of things now. I also do not want to be zonked out to get some relief. I know some who like to be "high" and not feeling any pain or discomfort, but that is not my wish. I have tried meditation and such, but it does not seem to help.


I have a friend who was talking about how we all have in the back of our minds, whether we realize it or not, the fear that we will end up a type of vegetable or someone who is in constant pain. I suppose that is true. It is hard for it not to cross our minds when we know or read about so many who have ended up that way. No matter how strong one's faith is death is an unknown and there are so many horrible ways to accomplish it.


I am writing this hoping it will calm me down. To a degree, it is working. I have not been a perfect person in my lifetime by any stretch of the imagination. But I don't remember ever being deliberately cruel or mean to anyone. If I have been, I certainly apologize.


Holding a grudge is not my style either. Like every other human being who has ever lived, I have had people be mean to me and hurt me. But after a while, I always got over it and let it go. I am hoping that this overly emotional period will soon pass and I can get back to as normal as I can, given the circumstances.


When I got so angry, one of the first things that came to mind was a bull snorting and seeing red. I remember a lot of cartoons with bulls in the ring and having steam come out its horns. It always had red eyes........seeing red, so to speak. I guess that is OK, but red is not my favorite color..........I tend to favor lavender myself...........

Wednesday, October 17, 2012

Spoiled-Brat Child

I hate having to be so involved in myself.  Having MS makes me so aware of everything I do.  What I mean by that is: having to be so careful trying to walk, talk, eat or any other everyday activity that most people take for granted.


Buffy, my little spoiled brat Pomeranian, is a little sick today.  Her stomach is upset and she is throwing up some. All she wants to do is sit in my lap and feel safe.  She does not understand what is happening to her and just wants to be with me and let me comfort her. I was sitting here loving on her and realized that it was so nice to be thinking of something that didn’t involve MY problems.  Not that I would want her to ever be sick under any conditions.


It is funny how much of each day I spend trying to be “normal”.  Nothing comes easy and each thing is a challenge to do.  I feel so selfish sometimes.  Most of my thoughts seem to be about how I can do something without causing more problems for myself and my husband.  Although he never complains, I feel like I take all of his time in worrying about me and trying to see that I have all that I might need.  He is such a fantastic person and never complains.  I am the one who complains about him having to take care of me.


I have talked to people and read things people have written about having to be a caregiver for someone.  I know how hard it is because we have my mother here with us and she takes a lot of care.  She is not disabled, but her mind is going and she often is not in the same world as the rest of us.  I worry that, although he loves me much more than I deserve, my husband will tire of having his life so altered by my illness.  I know from reading other’s comments that it is a common worry among those of us who have MS or other illnesses.


Many times I look at couples when we are out shopping and such and really envy them.  My husband and I hold hands or link arms but a lot of the reason is that I need the support to walk.  We always held hands, but if one of us wanted to walk over some place and look at something the other didn’t, we could walk away with no problem.  That is not a choice now.  My husband always makes sure I am in a safe environment and never leaves me unattended.  I often think of myself as a small child that cannot be left alone and is always the first priority for someone.


I guess I am whining for him because he won’t.  Taking on the responsibility of caring for someone often causes bitterness for that person and becomes a terrible chore.  My great blessing is that he does not feel this.  My constant prayer is that he will never feel that way.


As I said, Buffy is a spoiled brat-child, but we love her anyway.  I try not to be “a brat” with my husband and not demand or expect more attention than he has to give me to get through the day.........  well, at least I try not to!!


Tuesday, October 16, 2012

Looking Over My Shoulder

I am trying to pass time while waiting on my football game to start. (By the way, my team won!  Go Packers! :) Thinking about waiting for something to happen makes me think about all the times most of us wait for our pain medicine to kick in, a cure to be found, or thoughts to assemble themselves in our brains.


Sometimes I feel like I spend a lot of time looking back to things I used to do and dreaming of things I want to do. Most of us have accomplished things in our lives that we are proud of. Maybe we haven't been able to make our dreams come true, but we have times that we remember with pride. I look back and realize that I have accomplished several things that I really wanted to do. I gave birth to three wonderful children. I love my fantastic husband and he loves me. I had a very interesting career as a paralegal. I wrote two books and have them on my bookshelf. I have some friends that I am so thankful to have as part of my life. All in all, I have had a good life.


But, all of my accomplishments seem to be in the past. I am not presently working and my brain seems very often to go on vacation.  I have several stories/books I am trying to finish and that does not help me do so. I have so many days when I just don’t have the energy to move.  These seem to be the days that I really want to cook and clean and just can’t. I feel like I am constantly at the past and hoping that it will find its way into the present. It is a fruitless endeavor so I think I will stop doing it.

Although I can't do most of the things I once did, I can still function and make a contribution to our household. My husband is constantly getting me involved in activities that we can do together.  Most of my family is wonderful and understanding of my condition.  I really cannot complain although I seem to want to do so lately!


I remember when I used to go on trips when I was young and look out the back window of the car.  (This was in the years before seatbelts were mandatory.) It was always interesting to see the things we were leaving behind and getting excited about going to a different place.  I am going to take that attitude about my life.


As the old saying goes, life is what you make it.  I am really beginning to understand that phrase.  It is easy to get bogged down in our problems and miss all the wonderful things around us.  (Stop and smell the roses?) It took a lot of years to get to the age I am and I really should enjoy them.  I am sure there will be far less ahead than there are behind.  I don’t want to miss out on all the fun that I could be having if I would only let myself.  Besides, I have a spoiled brat dog that watches my back for me so I don’t need to!


Monday, October 15, 2012

Kermit the Hermit

I’ve been worrying about my state of mind lately.  There are several things that we had planned to do, but I was either sick or just could not get up the strength to do them.  What really bothers me about this is the fact that, for the most part, I did not care that we did not get to go to these things.

Many years ago one of my cousins married a guy who mistreated her.  He ran around on her and emotionally brow-beat her.  When he finally left her for good, she went into hiding.  Except for going to work, she did not leave the house.  She quit coming to family gatherings, didn’t answer the telephone and even had her groceries delivered to her house so she would not have to go to the store.  We were all very worried about her but didn’t know how to help her get out of the hole she had crawled into.  It took her several years, but she finally began to call some of us and gradually worked her way back into society.  She is a bundle of laughs and a joy to be around now.

I remember when she was going into her hole, she slowly began to beg off going to certain functions and events we had planned.  I feel that I am doing this same thing.  It is not so much that I have missed things because of sickness, it is that I have missed things and don’t particularly care.  I have a very hard time explaining how I feel because I don’t really know how I feel.  A part of me would love to go out with our friends and enjoy being together.  Another part of me does not want to be around anyone and just wants to stay at home in my own little cozy, safe world.

Most of us have talked about depression in our blogs and on websites.  It is a major struggle with some and an occasional battle with most of us.  No matter what we have heard about “those people” over the years, being depressed is a horrible place to be and often very hard to deal with and find the right medications to help get over it.

I really don’t think I feel depressed.  As I mentioned before, we have lost two dear friends in two weeks.  We have both been sick for a couple of weeks.  Life has not been fun and games lately but it can always be worse.  We are thankful for each day we have and very thankful that we have we are on the road to recovery from our sickness.  

I am not sure what the problem is.  Sometimes I feel like some have said they do when going out in public.  I hate knowing that people watch out of the corner of their eyes or just stop and stare.  I don’t like the fact that my husband has to be so watchful of me when we are out to make sure I don’t fall, don’t choke or don’t get lost.  I don’t like the fact that I usually have to use the ramp rather than walk up the steps so am putting a burden on those who are with us.  I don’t like knowing that if we are out and someone asks me a question, there is a 50/50 chance that I won’t be able to get the words out of my mouth to answer them.  I am sure you could add some to this list but I will stop here.  You get the point.

I did not write the above to whine and complain.  I am trying to figure out in my mind why I no longer want to be the person I used to be.  I know that I have quite a few more limitations than I did a few short years ago.  That should not be a reason not to want to do these things.

We are supposed to go with friends to the mountains for a day trip on two different days next week.  I am looking forward to this .......but I’m not.  Does that possibly make any sense to anyone???

I do not want to be in the hermit category ....... I much prefer Kermit as a frog!!!!!!!!!!

Friday, October 12, 2012

Birds of a Feather

For the last several months we have been unable to attend our monthly MS meeting.  I have really missed the people there and want to see and talk with them. I have had telephone conversations with them, but it is not the same as being with them and seeing how they are in person.

I guess it is not a great news flash, but most of us generally hang out with people we have things in common with, whether it is music, sports or diseases.  I remember going to family reunions and all the adults who had had surgery always hung out together.  They seemed to really enjoy going over their procedures with each other.  At the time, I could not understand why something like that would be so entertaining.  Now I do.

I have noticed that I do not really enjoy the companionship of someone who constantly talks about their physical or intellectual activities.  Going hiking or to the gym would probably be fun if I could do it, but I can’t.  Debating with people on different subjects would be fun if I could still think that quickly.  I am sure a part of the reason I don’t enjoy being around active people is jealousy.

I admit it.  I wish I could still do those things.  I loved playing beach volleyball, dancing and walking on the beach.  I loved composing arguments for the lawyers I worked for to present in court.  I loved going out to eat and discussing current events with people who had different views than mine.  My body and my brain enjoyed being active and I was involved in things that kept them happy.  I miss those things.

I think I sound like I whine when I write this blog sometimes.  I guess instead of whining around the house, I put it in writing and let it go.  It is a wonderful outlet and I prefer this to being a complainer and someone no one can stand to be around.

In reality, I am so thankful for the things I can still do.  Although limited, I can still cook, write, read, speak, walk and function on a daily basis.  Some days I am more limited than others, but they have their place in my life also and I try to catch up on my reading and blogging on those days.

There is safety in hanging with people who share our disease.  We don’t have to go into great depth explaining what we are feeling and don’t have to worry about them looking at us like we are crazy.  We get sympathy, love and encouragement from each other.  As Martha Stewart would say, that is a good thing!

I know that some would consider our “group” dull and boring but I have found some wonderful friends and great minds here.  We are some of the most thoughtful, kind, loving and sympathetic people a person could hope to know.  I am proud to be a bird in this group!!

Thursday, October 11, 2012

Burn Your Bra!

Back in the 60’s we started doing a lot of new things; some of them were good and some not so good.  One of my cousins, who is a few years older than I am, was really into the hippy movement.  I guess she was more of a Flower Child, but you get the point.  She was one of the girls who burned her bra.  I don’t think she has owned one since then.

The Cool Quiz website states the following: “The history of the brassiere, more commonly known as the bra, reveals that its form and purpose has been shaped by the current fashion trend. Along with the many changes to this female undergarment comes a debate over who should be credited with the creation of the modern bra.  Few disagree that the bra dates as far back as 2,500 BC, when Minoan women on the Greek island of Crete wore a garment similar to a bra, which lifted their busts out of their clothes, leaving them exposed. The custom of ancient Greek and Roman women, to minimize the bust size, completely reversed the Minoan trend. To minimize their chest size, these women strapped bands over their busts to rein them in. The debate over the true inventor of the modern bra has not been entirely resolved. A gentleman named Hoag Levins spent a great deal of time in the U.S. Patent Office doing research for a book, and concluded that Marie Tucek obtained a patent for the first brassiere in 1893. She named her invention the "breast supporter," because it had separate pockets of each, straps that went over the shoulders, and hook-and-eye fasteners in the back. Unfortunately, Marie never marketed her invention, which very much resembled the modern bra.”

Lately I have been in the no-bra category.  When I wear one, I get that dreaded MS hug.  Taking off the bra does not help it once it gets going and just has to wear itself out.  To hopefully help avoid that problem, I quit wearing my bra, at least most of the time.  I wear one when I go to church or a function.  But when I am around the house or with family, I do not.

Many on some of the MS sites have asked the question of what an MS hug is.  A lot of people write answers to this question and most of the women agree that wearing a bra is a no-no.  I am all for this idea!  I am at the age where a bra is not going to help or hurt me, so why bother, especially if it will cause me pain.

So, burn your bra ladies…………or at least put them in the back of the drawer and forget them for as long as possible!!

Wednesday, October 10, 2012

Crohn’s for a Crone

According to Wikipedia, a Crone is an old woman. In some stories, she is disagreeable, malicious, or sinister in manner, often with magical or supernatural associations that can make her either helpful or obstructing. The Crone is also an archetypal figure, a Wise Woman

Also according to Wikipedia, Crohn’s Disease is a type of inflammatory bowel disease that may affect any part of the gastrointestinal tract from mouth to anus, causing a wide variety of symptoms. It primarily causes abdominal pain, diarrhea (which may be bloody if inflammation is at its worst), vomiting (can be continuous), or weight loss, but may also cause complications outside the gastrointestinal tract such as skin rashes, arthritis, inflammation of the eye, tiredness, and lack of concentration.  

Hopefully, I do not fit into category number one.  have a cousin who calls herself an old crone.  Not that she is strange, mind you, but she does have a fairy tree in her yard and believes things that I really don’t understand.  I love her, but she IS strange!
But I DO fit into category number two. It is not the type of thing one brings up at a formal dinner party.  If it ain’t one thing it’s something else!!!!

One of the things I find most frustrating with MS is the fact that it has so many different symptoms.  When something happens that is out of the ordinary, we often don’t know whether to go to the doctor or assume that it goes along with the MS.  That is what happened to me.

This Crohn’s problem started last year.  I was in terrible shape for a couple of months before my husband talked me into going to the doctor.  Naturally, I was sent by my doctor to a specialist to be checked out.  I had to have a colonoscopy (which is a fun process in itself!) and the results came back that Crohn’s was the culprit.

If you have not known anyone who has this, it is very painful.  Not only that, it keeps you very close to home for fear of having an “accident”.  Since it is such an unpleasant disease, it is not discussed much in the finer circles!

I am hoping that we are getting all the bad stuff out of the way so we can enjoy the upcoming fun time of the year.  We have had the flu, deaths of two dear friends (another died this weekend) and now this.  The rest of the year should be a piece of cake!!


Friday, October 5, 2012


All across the world there are many types of places. One of the darkest, scariest and cruelest places is known as MS Land. Like most lands, it is filled with young, old, rich, poor, male and female people. But, unlike most lands, no one ever leaves this place.

Some of the people in MS Land have jobs that they enjoy and are able to support themselves and have a relatively normal life. Some of the people in MS Land are only able to have a minimal amount of activity and barely take care of themselves. Some of the people in MS Land are totally dependent on others to take care of them.

Like Camelot, MS Land is plagued with a terrible dragon. Unlike Camelot, MS Land does not have a King Arthur and Sir Lancelot to try and save them from their dragon. But, they do have several knights who try their best to keep the dragon at bay. There is Sir Copaxone who daily battles the dragon but only manages to control him to a small degree but never totally defeats him. There are Sir Avonex, Sir Betaseron, Sir Extavia and Sir Rebif who also give their all in their battles with the dragon. Sir Gilenya is a new knight in the land and he also battles the dragon with all the skills he has. He, too, keeps the dragon at bay, but never defeats it.

The dragon causes the people in MS Land many problems. Some days he zaps their nerve endings and makes the people jittery, jumpy and buzzy; some days he washes them with relaxants and causes them to have extreme fatigue; some days he stomps the ground and causes the people to wobble, stumble and fall; some days he sends out waves of pain through the land and the people suffer and find no relief. At night the dragon goes to his cave and works on new ways to make the people of MS Land suffer. His bag of tricks seems to never run out.

Life in MS Land is full of ups and downs. The people band together and try to hold each other up and keep each other from falling victim to despair. There are doctors, nurses, scientists, public speakers, authors, bloggers and all types of people who constantly send out encouraging words to their fellow residents. All of the people in MS Land have one common goal – to find the strongest knight to fight the dragon and kill him once and for all. The people are not only hoping that the dragon is killed to help them, but to make sure that others will not have to go through all the pain and sorrow that they experience each day of their lives.

So, as each day dawns, the people of MS Land fight their dragon, make the most of the lives that they have, and pray that their knight in shining armor will arrive soon. Until that day arrives, they will gallantly fight their dragon and cherish each small battle that is won.


Thursday, October 4, 2012

Puff The Magic Dragon

I have really been up close and personal with my boxes of tissues lately.  Once you have blown your nose nine thousand four hundred and eighty three times, there is definitely something to be said for those tissues that have the lotion in them!  Without them, I am afraid that my nose would have fallen off.

Not that I would recommend any of them after a while.  It is kind of like running a piece of sandpaper across an open wound……no matter how you do it, it is painful.  I also do not recommend any cough syrup.  In general, they are ALL nasty!  Most of the time, they do not stop a cough and just leave a really horrible taste in your mouth.

I guess I am getting better.  I am not sneezing, coughing and blowing my nose as much as I was the last couple of weeks.  It is a wonderful thing!

It has really kicked my fatigue issue in though.  My energy level is way below sea level.  Even though fatigue is one of the biggest issues I have with MS, this has made it unreal.  I have not even had the energy to think, so my blogs are way behind and I am too tired to even keep up with my reading.  OK, so I am whining!

Contrary to what most psychiatrists will say, I think we should all be able to have a pity party now and then, especially when you have an ongoing disease that kicks you down most of the time anyway.  I am having a real problem lately with feeling that I am not contributing even the piddly little amount I am usually able to in the household.  This makes me very unhappy and tends to put me in the blues.  My husband, as usual, tells me that it is not a problem and I do plenty around the house.  I totally disagree.  Even at my best, I barely help with things, much less contribute my share.

Like I said, I am feeling useless.  It will pass.  It is just not passing as quickly as I would like it to.

I saw my psychiatrist yesterday to have my prescriptions for Ambien and Wellbutrin refilled.  I still don’t believe that the Wellbutrin will give me energy, but I am willing to keep trying it and see.  I know it is their job to ask a bunch of questions, but I wonder how many people really give them honest answers.  I like my psychiatrist, but she gets all gung-ho about things.  She is willing to turn the world upside down to fix something.  That is not always possible.

I hope I am getting a little more back to normal (whatever that is!) and can do my blog writing more on a regular basis and do some things around the house.  But, for now, I will just sing...................



Wednesday, October 3, 2012

PBA Revisited-An Interview With David and Arlene Diehl

Back in June I wrote a blog on pseudobulbar affect (PBA).  Many had never heard of this while others were so thrilled that they were not going crazy and finding out that other people experienced this also.  Like many other MS patients, I have mentioned this behavior to my neurologist but he just shrugs and ignores it.  I was contacted by a reader of my blog who asked if I would like to interview a couple who are dealing with PBA.  I was thrilled to be asked and quickly accepted the offer. 

Just for a brief introduction, David and Arlene Diehl have been married 37 years and live in East Helena, Montana.  They have three grown children and five grandchildren. David was initially stricken with Transverse Myelitis in 1991.  He went from normal to paraplegia in less than 5 days.  He is a complete T-11 paraplegic from this attack.   Seven years later, in 1998, he developed MS, and was started on Avonex shortly after that.  According to Arlene, in 1998 she noticed David’s emotional displays and reactions were not normal.  She immediately noticed that it was similar to what she had seen in her father, who had MS for 22 years before passing away when she was 17 years old. It was not until 2003 that they learned from David’s neurologist that what David had was called PBA.


PBA is a neurological, not psychiatric illness caused by an underlying neurological condition, such as Multiple Sclerosis, traumatic brain injury, Alzheimer’s disease, Lou Gehrig’s disease (ALS), Parkinson’s and stroke. Due to a lack of awareness and knowledge of PBA in the medical community, PBA is often misdiagnosed as depression or part of the primary neurological disease—when in fact, it’s a separate, treatable condition. Nearly two million people with an underlying neurological condition may have PBA, but many go undiagnosed. PBA occurs when certain neurologic diseases or injuries damage the areas of the brain that control normal expression of emotion. This damage can disrupt brain signaling, causing a ’short circuit’ and triggering episodes of involuntary crying or laughing. These outbursts are not consistent with the patient’s current emotional state, leaving them to laugh or cry when they don’t find things funny or sad and can be frequent, severe and disruptive to everyday life. These episodes are often so disruptive they can interfere with routine activities or cause patients to avoid social situations altogether. The condition has a tremendous impact on loved ones and caregivers as well.

Arlene states that in David’s case, his PBA would manifest in him laughing when trying to have a serious conversation, or would often laugh far longer than he wanted to.  He also would cry over a touching commercial, all the while knowing that it was not proportionate with the degree of his true feelings about the event. I asked Arlene when she came to the conclusion that her husband had a problem and what David’s doctor did.  She told me, “I noticed it right away in 1998, when he was diagnosed with MS, most likely because I had seen it in my father.  David’s personality changed and it was very disruptive to our lives. At one point I told the doctor, “Either he is going on a treatment, or I am.  His unpredictable laughing and crying episodes were hard on our relationship and I felt that he/ I needed some help.” David tells of being at a funeral where a joke was told, laughing long after, and feeling embarrassed and trapped because he was seated in the front of the room. Our children used to say that their dad had days where he was “happy-grumpy” in other words, he was grumpy, but would be laughing as he was scolding or complaining about something.  This often led David to feel disrespected. There have been times when David would try to tell me something sweet or try to apologize for something, and laughter would ensue.  At first, I would be upset until I learned to give grace because I knew that he was having what we later learned was PBA.”  I asked Arlene if David was an emotional person before the PBA and she said no, that he was very controlled emotionally.

I asked Arlene what adjustments the family has had to make with these emotional changes in David.  “We have learned the disconnect in his emotional reactions is part of the disease”, she told me.  “We now know Happy Grumpy describes PBA and not who David truly is.  I have to give extra grace and consideration, because for David, his ability to handle ‘frustration has been greatly affected.’” Arlene further stated that they had previously discussed David’s difficulties with the neurologist (Dr. Dennis Dietrich) and tried several antidepressants. It was not until his doctor was involved in a clinical trial that they understood that what David was experiencing was PBA. David and Arlene noticed similar symptoms in David’s brother Dan, who died from ALS in 1995. David thought his little brother was being overly emotional because they were unaware of PBA at that time. 

As far as David’s symptoms, Arlene says that initially David was treated with antidepressants, but they did not mitigate his laughing and crying episodes. Also, David insisted that he was not depressed, and she had agreed, but they also knew that they needed something.  Once Nuedexta® was available, they noticed a definite reduction in his PBA symptoms.  Nuedexta has been a very good solution for David’s PBA.  He has not suffered any side effects from treatment and is pleased to be taking one drug instead of three to mitigate his laughing and crying episodes. The reduction in symptoms has been a huge improvement for them. Arlene states that she has seen many people who appear to display PBA symptoms, people with strokes, ALS, brain injury and MS.  “When I describe the symptoms to others, nearly all believe they have seen it in someone. I am happy to tell people there is a very effective option for this condition.” Since then, they have slowly taken him off of all the antidepressants.

I told the Diehls that most of us with MS seem to have a hard time coming to the realization that we may need to have help with other issues that arise. She told me this: “I think that it is hard to admit that you are struggling with uncontrollable emotional displays.  Often David did not recognize that he was overreacting.  He had to take our word for it.  Also, when you go to the doctor, your time is taken discussing the physical issues that are affected and one does not want to say, “Hey—by the way, my emotional displays are not normal!!” Those who are already struggling with diminished physical well-being may be reluctant to disclose what may sound like their “head is not screwed on right.”  This can be embarrassing and discouraging. It also adds another layer of complexity when some PBA symptoms can appear to disguise themselves with symptoms of depression.”

I asked Arlene what a normal day is like for them.  This was her answer: “David and I start our day about 7am. I do assist him with some aspects of his morning routine, but otherwise, he is primarily independent.  I work at our church as an assistant to our pastoral care pastor and David spends the morning at the ranch office, driving down to the ranch on his ATV.  He also rides a hand cycle most days and puts around 800 – 1000 miles a year on that bike. He returns home on his ATV and is able to rest most afternoons.  His time is spent marketing the grain for the ranch operation and he also helps to find equipment online.  We are both very active in our church and know that our lives are made better by our personal faith. Without our faith, the years we have struggled against David’s sickness would likely have destroyed our marriage.  All the drugs in the world can’t fix all that his health issues have taken--our church life and faith in Christ have helped to make up the difference in many regards.”



NUEDEXTA® is the first and only FDA-approved treatment for pseudobulbar affect (PBA). NUEDEXTA is an innovative combination of two well-characterized components; dextromethorphan hydrobromide (20 mg), the ingredient active in the central nervous system, and quinidine sulfate (10 mg), a metabolic inhibitor enabling therapeutic dextromethorphan concentrations. NUEDEXTA acts on sigma-1 and NMDA receptors in the brain, although the mechanism by which NUEDEXTA exerts therapeutic effects in patients with PBA is unknown.

NUEDEXTA is indicated for the treatment of pseudobulbar affect (PBA). PBA occurs secondary to a variety of otherwise unrelated neurological conditions, and is characterized by involuntary, sudden, and frequent episodes of laughing and/or crying. PBA episodes typically occur out of proportion or incongruent to the patient's underlying emotional state. Studies to support the effectiveness of NUEDEXTA were performed in patients with amyotrophic lateral sclerosis (ALS) and multiple sclerosis (MS). NUEDEXTA has not been shown to be safe and effective in other types of emotional lability that can commonly occur, for example, in Alzheimer's disease and other dementias. The primary outcome measure, laughing and crying episodes, was significantly lower in the NUEDEXTA arm compared to placebo. The secondary outcome measure, the Center for Neurologic Studies Lability Scale (CNS-LS), demonstrated a significantly greater mean decrease in CNS-LS score from baseline for the NUEDEXTA arm compared to placebo.

NUEDEXTA Important Safety Information

NUEDEXTA can interact with other medications causing significant changes in blood levels of those medications and/or NUEDEXTA. NUEDEXTA is contraindicated in patients receiving drugs that both prolong QT interval and are metabolized by CYP2D6 (e.g., thioridazine and pimozide) and should not be used concomitantly with other drugs containing quinidine, quinine, or mefloquine. NUEDEXTA is contraindicated in patients taking monoamine oxidase inhibitors (MAOIs) or in patients who have taken MAOIs within the preceding 14 days. NUEDEXTA is contraindicated in patients with a known hypersensitivity to its components.

NUEDEXTA may cause serious side effects, including possible changes in heart rhythm. NUEDEXTA is contraindicated in patients with a prolonged QT interval, congenital long QT syndrome or a history suggestive of torsades de pointes, in patients with heart failure as well as patients with, or at risk of, complete atrioventricular (AV) block, unless the patient has an implanted pacemaker.

NUEDEXTA causes dose-dependent QTc prolongation. When initiating NUEDEXTA in patients at risk of QT prolongation and torsades de pointes, electrocardiographic (ECG) evaluation of QT interval should be conducted at baseline and 3-4 hours after the first dose.

The most common adverse reactions in patients taking NUEDEXTA are diarrhea, dizziness, cough, vomiting, asthenia, peripheral edema, urinary tract infection, influenza, increased gamma-glutamyltransferase, and flatulence.

NUEDEXTA may cause dizziness. Precautions to reduce the risk of falls should be taken, particularly for patients with motor impairment affecting gait or a history of falls.


Patients should take NUEDEXTA exactly as prescribed. Patients should not take more than 2 capsules in a 24-hour period, make sure that there is an approximate 12-hour interval between doses, and not take a double dose after they miss a dose.

These are not all the risks from use of NUEDEXTA.