Understanding the Nervous System

I found the following article on multiplesclerosis.net and found it very interesting from the standpoint of someone with neurological problems.  I find it hard to explain to others how MS affects the nervous system and then how the nervous system affects MS.

I know it’s a pretty long article… hopefully you’ll have time to read it.

XOXO

Valerie

P.S.  To my friends with MS, this nurse has written many more blogs on MS, if you are interested.

Multiple Sclerosis 101: Understanding the Nervous System

By Stephanie Butler, RN, MSCN—September 17, 2014

I have a theory that education leads to empowerment, and empowerment leads to people being good advocates for themselves and improved health overall. It can be difficult for healthcare providers to explain really complicated diseases, such as multiple sclerosis, during office visits. There is so much to cover in such a short time, that often education is minimized or cut out altogether in order to make sure that we have plenty of time to address other issues during the office visit. My first reaction to being diagnosed with MS was to go on an information binge, and learn everything I possibly could. I had the advantage of already being a neurosurgical nurse, and of having nearly a decade of training and education in human biology, anatomy, physiology, and pathology. However, the average person diagnosed with a serious neurological disease doesn’t have a background in neurology. I can’t imagine how difficult it would be to try to understand it all on your own, without any prior knowledge. After all, even some of the nurses and doctors I know recoil at the thought of neurology because it is a difficult topic to learn and master. However, I have confidence that you all will be naturals since you live these concepts every single day. Firsthand experience is always the best way to learn! So, I want to attempt to teach you the major concepts of neurology, with the hope that you will get a deeper understanding about what MS is and how it affects you. If you’ve ever had a symptom and wondered “what in the world was that?”, then this is for you!

First, the Basics

What exactly is the nervous system and what does it do?

The nervous system is divided into two parts, the central nervous system (CNS), and the peripheral nervous system (PNS). It is easiest to picture the nervous system as a tree. The CNS is the tree’s roots and truck, consisting of the brain and the spinal cord and the PNS is the tree’s branches, consisting of nerves that travel to our organs, glands, muscles, and skin.

Overall, the main job of the nervous system is to organize and keep all the cells in your body on task. It acts as the body’s drill sergeant and leader. Since the brain can’t scoop up a megaphone and yell marching orders, it communicates with it’s army of cells via electrical and chemical signals. These signals travel from the nervous system through nerves and down to cells until the command is carried out.

The nervous system never sleeps, and is constantly gathering information and reacting to it at an astonishing speed. For example, when your stomach is empty it sends a signal that your brain recognizes as hunger, and you become aware that you need to eat something. Some signals are automatically detected and responded to, without you even having to think about them. These are known as reflexes. An example would be when you touch a hot stove the sensation travels up your nerves and into your spinal cord. This triggers an instant response, and your muscles quickly jerk your hand away. Your brain simultaneously processes the incident which makes you say “ouch, that was hot!”.

Every task our body does, consciously or unconsciously, has to travel through the nervous system in order to be completed. This information is usually communicated so quickly that we don’t even realize how complicated of a process it is.

The PNS is made up of sensory nerves and motor nerves. Sensory nerves do exactly what they are named for! They sense what is going on in the body by gathering information from our skin, muscles, bones, joints, and organs such as the bladder, stomach, and lungs. They then take this information and send it to the CNS for processing and further commands. Once commands are issued by the CNS, it is the job of the motor nerves to carry out these orders. This is the basic principle behind all of our body’s voluntary functions, and it is also where communication breaks down and problems start to occur in people with MS. Bladder dysfunction is a perfect example. Sensory nerves sometimes “over-sense” and signal our brain that our bladder is full long before it really is, and the result is an overactive bladder that constantly gives you the urge to urinate. In others the nerves “under-sense” and fail to alert your brain that your bladder is full, and can result in leaking of urine or incontinence. Motor nerves can affect the bladder too. Since the bladder is a muscle, and we depend on muscles to hold in urine, muscle weakness can cause incontinence. Additionally, leg weakness can make it difficult to make it to the bathroom.

And that’s really the basics, not so bad right? Now if you are feeling brave lets move onto:

Everything You Need to Know about Nerves!

As you may have gathered already, nerves are responsible for carrying signals between the CNS and the PNS. Going back to the tree metaphor, the nerves are what carries water from the ground through the tree’s roots and trunk, and into the branches resulting in nice green leaves. Now replace “water” with chemical and electrical signals, and you’ve pretty much got it down! MS targets our nerves, so it is important to understand how they work if you want to understand MS.

Lucky for us, all normal nerves have three things in common:

#1. They are excitable! They’re like that lady at the nail salon who knows everything about everyone, and excitedly gossips to everyone who will listen. Sensory nerves recognize things like heat and hunger, and get so excited that they create an electrical current. This electrical signal quickly runs up a series of nerves to the CNS so action can be taken.

#2. The are conductive. An electrical cord’s job is to get electricity from a wall socket to a TV so that we can watch our favorite show. Similarly, a nerve must take electrical signals and conduct them from cell to cell in order to complete essential tasks like breathing, digesting food, moving our muscles, and keeping our heart beating.

#3. They release chemicals. Nerves are short, so it takes a chain of them to cover enough distance. This means that they must somehow get their electoral signal to the next nerve in order to keep the signal moving forward. They do this by releasing chemicals know as neurotransmitters. Neurotransmitters are able to jump across the gap between nerves and keep the electrical signal going. You may have heard of some common neurotransmitters such as seratonin and dopamine. I drew you a little picture so you can see how one nerve activates the next to form a chain reaction:

nerveconduction

In the picture the yellow ovals are myelin. Myelin forms a protective coating that acts much like the rubber insulation around electrical wires. In the CNS myelin is made by a special type of cell called an oligodendrocyte. Oligodendrocytes produce myelin and wrap it around nerves so that they can properly conduct electrical signals. MS attacks both oligodendrocytes and myelin. This is a double whammy because it not only damages existing myelin, but also inhibits the production of new myelin.

Now how on earth does all of that relate to you exactly? Lets use the phone charger that my new kitten just chewed through as an example! I have to get rid of it, because it doesn’t charge my phone reliably anymore, and I don’t want to risk the fire hazard! MS is the same type of situation. The myelin coating is chewed through, leaving the inner wiring of the nerve exposed. Some electrical signals may go through, but overall the wire is frayed and unreliable. At least we don’t run the risk of spontaneously combusting (silver lining?)! Over time scar tissue forms around the damage (which is why the literal translation for MS is multiple scars). This scar tissue is what we can see in the form of lesions on an MRI scan.

See that, you are already making connections! Now for the fun part, putting it all together!

Why MS Causes Such a Wide Variety of Symptoms

I have been trying to illustrate for you what a huge responsibility your nervous system has. It is responsible for organizing and carrying out thousands of tasks every day. In order to handle such an overwhelming job it has to take a “divide and conquer” type of approach. Each area of your brain is assigned a different task. There are areas for everything ranging from speech, memory, coordination, hearing, emotions and sleep, to bodily functions like bowel and bladder control, breathing, and digestion.

This is why MS, a disease that attacks the nervous system, can cause such a wide variety of problems. One doctor of mine once referred to MS as the whack-a-mole (fun game!) of diseases.  There is no way to know or to predict where a lesion is going to occur. For instance, one can pop up in your temporal lobe and cause you to start talking funny, or another could appear in your cervical spine and make your leg go numb. Some people have more lesions in their spine which primarily leads to issues with sensation, incontinence, and walking. Others have lesions in areas of the brain that make cognitive deficits their most challenging symptom. MRI’s allow us to look at the area of the brain that coordinates with the person’s symptom, so that we can monitor for any new damage.

When new symptoms occur, or when a relapse happens it means that the coordinating area is under attack. The nerves in that area have their electrical signals interrupted so they either have a more difficult time performing their normal duties, or they cannot perform them at all. Over time scar tissue forms and new research is showing that the nerves can even heal to some extent. The brain also finds ways to work around and compensate for the damage, so that some function can be restored. Much like building a bridge over a river, this process takes time and effort which is why it can take months to recover from a big relapse.

The majority of people living with relapsing-remitting MS have symptoms even in times of remission because our nervous system hasn’t completely compensated for past damage. Additionally, most of us have symptoms that wax and wane, which is what causes those “bad days” that we all know so well. There are several factors involved in these bad days including dehydration, lack of sleep, stress, extremes in temperatures, and illnesses. All of these things make it harder for even normal nerves to conduct electrical signals, and for nerves already damaged by MS it’s like adding insult to injury.

It’s pretty miraculous what our bodies go through, and all things considered they put up one heck of a fight. If you made it through this looooooong post without nodding off I hope you learned something new, and enjoyed it too! Any questions??

Profile Photo

About Stephanie Butler, RN, MSCN

Stephanie is a nurse, fitness enthusiast, science nerd, and eternal optimist. After being diagnosed with RRMS she realized that she could use her experiences as a patient to make a difference in the lives of others. Six months after she was diagnosed she became a Multiple Sclerosis Certified Nurse and began working in an MS center where she is a patient.

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I Don’t Want to Have MS Anymore

I Don’t Want to Have MS Anymore

Published Jul 30, 2014

So, I’m sitting at my desk doing some research for today’s blog. I’m combing the latest news from clinical trials, the most recent news stories. I’m poking around all of the patient service and advocacy organizations’ sites. Then it hits me – I just don’t want to have MS anymore.

Don’t get me wrong, I know that after a diagnosis and without a cure, not living with MS means not living. I’ll choose the latter, thank you.

Still, living for an extended period with MS (and it will be 14 years in the spring, not the 18 I counted last week – stupid cog-fog), I find MS is like a heavy bag of something that I have to carry around.

The bag wasn’t always this heavy. Sometimes it’s still heavier than others, but it’s always an awkward shape and size. I shift the bag from one hand to the other, like a grocery sack that was packed too full, and try to shift the burden. I sling it around and stop by the road to rest now and again, but the bag of MS is always with me.

The days when the bag would fill and then empty some are gone forever. Now it just gets progressively more full, more heavy, and more difficult and tiresome to carry though each day.

But still we marshal on.

Today, rather than sit down with my bag at my side to rest for a while, I wish I could just leave it and walk along sans bag for a while. Well, forever, really, but let’s not get ahead of ourselves.

I’m not whining or complaining too much – and even if I were, I know that this community would understand what I’m talking about. I’m just tired of having MS. I’m not tired of living, I’m not depressed, I don’t need to take a pill or a nap. I’ll be fine…

I just wish I didn’t have this thing to carry around for today.

You know what I mean?

8/6/14

From Valerie:

I saw this post and had to re-post it because it is exactly how I feel!  I started feeling this way around year 10 and it’s been 14 yrs. for me too… You start to wonder how long you can put up with something like this until it starts to drive you crazy… knowing that it will never end… never.

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The Spoon Theory

I’m not sure if I’ve posted this before… but if I have, it’s still a good reminder to those of you who have to ‘put up with’ those of us with MS. You can get more info on this story and the lady who wrote it here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

The Spoon Theory

by Christine Miserandino http://www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

Cartoon image of Christine Miserandino holding a spoon

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

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Is having a disability different from being disabled?

The dictionary defines ‘disabled’ as incapacitated  by illness, injury or wounds; whereas ‘disability’ is defined as to make unable to perform by or as if  illness, injury, or malfunction.

Actually, I had never considered the difference between the two words nor had I ever considered myself ‘disabled.’  I do have a disability that makes me unable to perform certain tasks; although after looking up the definitions of the two words, I don’t think I would ever consider myself as being disabled.

That being said, most of my MS symptoms are the kind that you can’t really see, except that my right leg drags a little.  Those of you with MS that have to live in a wheelchair or scooter, or those who can’t leave the bed or the house due to your symptoms would most likely consider yourself to be disabled (I know I would!).

If you have Relapsing/Remitting MS, as I do, you know that MS is considered an ‘Invisible Disease’ (the “But You Look So Good” syndrome).  A lot of us suffer symptoms such as nerve pain, cognitive issues, fatigue, mood swings, depressions, vision problems, etc that people can’t SEE and it can be awfully hard to explain to someone who doesn’t have MS how hard it is to live every day of your life with this.  Never knowing from one day to another what that day is going to be like… will it be a good day, a bad day, or a so-so day?

So… do those of you with MS consider yourself as having a disability or being disabled?

May God bless you!!    Valerie

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Things I owe to my MS

The following was posted on the MSWorld newsletter:

Owing MS for the person that I have become, left only to wonder whom I may have never been

Owing MS for the lesions that I’ve learned about never giving up, left only to wonder what might have not been

Owing MS for the people that I have shared my life with, left only to wonder how alone I could have been

Owing MS for all the ways I have been tested, left only to wonder what my limits should have been

Owing MS for all the miles I have traveled, left only to wonder where or when that first step might be

The many things I owe my MS, just to know that I am who I’m supposed to be.


April 2012 Thomas M. Burgess

I like this guys’ positive attitude about MS!

I’ve always wondered ‘where’ or ‘what’ I would be today if it wasn’t for my MS, have you?

Valerie

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Just Another Day

What a day!! 

Had to get up very very early because we were having the carpets cleaned today and they were coming between 7a and 9a.  We moved everything out of the living room except the TV and bookcases.  He came at 8a and was done by 9a.  Looks very good but was also very wet and we were told to wait 24 hours before putting anything back on the carpet. WHAT???   I can’t stand having everything out of place, so I left…

And went to Bible study at 9:30a.  We are studying our way through the Psalms.  Today we studied psalm 147 & 150 learning thoughtful ways to praise God for everything he does.

Then I picked up my BFF Mary Beth and we drove down to Bradley so that I could sign a release form to be abe to change pain doctors.  I want to coordinate the dr appt with my monthly IV every 4th Wednesday.  We’ll see…

Then I came home to a really cold house with all the ceiling fans and floor fans going full blast to dry the carpet.  Luckily it was dry enough for us to put everything back and all is right with my world again! LOL

That was my day.  How was yours?

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The Best Days

I had one of the best days yesterday! 

I started the day by teaching seven girls in my Sunday School class of 6-8th graders.  What a blast!  We are learning about Women in the Bible and yesterday we learned about Sarah.  After the lesson, we go through a form I prepare asking questions like 1) What book of the bible can we find the story of Sarah?  2) What were the highlights of Sarah’s life?  3) What can we learn, as women, from Sarah’s life? etc.  At the end of the hour, we light three candles, hold hands, pray, and then we all blow out the candles.  It’s a little ritual which they all love to do.  They are keeping all of the info on the women we learn about and we will make a scrapbook at the end of the SS year.

After that I headed to my BFF’s house and we started a new crochet project of a Ripple baby afghan together.  We got a little crocheting started and then I actually drank one of her special smoothies that she drinks and includes banana, pineapple, coconut and spinach leaves.  It’s defintely green but it wasn’t really that bad – you couldn’t taste the spinach in it.  Not that I don’t like spinach, but I’d rather have it in a salad!

Then Bill called and said supper would be ready when I got home.  He had put chicken breasts and barbeque sauce in the slow cooker.  It was a good meal, as usual!

I got home in time to watch Tiger Woods win the Arnold Palmer Classic.  I watch golf because I miss playing it soooo much!

Then I sat, watched a few recorded programs, worked on my Mystery Crochet-Along square for the week, read on my Kindle, then went to bed.

For me… that’s a great day!!

What’s your Best Day???

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