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Wednesday, April 20, 2016
Friday, February 12, 2016
Try Talking With a Chicken Bone Stuck in Your Throat
At least that’s what I imagine it feeling like…I’ve never
actually swallowed a chicken bone.
And I don’t plan on it…
By now there should be no secret that Multiple Sclerosis
affects lots of people in lots of different ways. It is painful, and there are
a lot of life altering issues that come with MS.
I have previously talked about swallowing issues that I
have, and that’s a scary thing to have when it comes to eating; it’s just
annoying the rest of the time.
People with multiple
sclerosis, or MS, often have trouble swallowing, a problem called
dysphagia. It can also lead to speech problems. It happens when the disease
damages the nerves in the brain
and spinal cord that make these tasks happen.
Symptoms of a Swallowing Problem
You might:
Cough or choke when
you eat
Feel like food is lodged in your throat
That feeling of food or something lodged in your throat is
annoying, it seems to always be with me, and is a very relevant part of my
swallowing issues.
But…
That’s not what I am talking about in this article (even
though it plays a part of it).
Have you ever heard of “MS Voice”?
I swear that the Multiple Sclerosis marketing team must be
George Foreman fans, because they stamp their name on everything. I know that
George Foreman isn’t behind MS, because otherwise it would be called “George’s
Disease”, “A Hug from George”, “George’s Voice”, etc., etc.
If you don’t know what I am talking about, Google “George
Foreman”, because that dude loves his name…from his grills to his kids...everything is named George.
Anyways…
“MS Voice” is when you have speech issues due to Multiple
Sclerosis. It can range from the tone of your voice, to the level (loudness) of
your voice, all the way to not being able to speak at all.
Have you heard the about aphonia?
It literally means “no voice”.
Aphonia is defined
as:
Loss of voice (also called aphonia)
may take several different forms. You may have a partial loss of your voice and
it may sound hoarse. Or, you may have complete loss of your voice and it may
sound like a whisper. Loss of voice can come on slowly or quickly depending on
the cause.
Did you also know?
Speech problems are common in
people with MS and may include lack of precision in articulation, loss of
conversational flow, and difficulty with speaking rate, loudness, or vocal
quality. These problems can have a pronounced negative impact on the ability to
communicate and, therefore, on quality of life…
Abrupt changes in pitch,
control, or loudness in people with MS are often caused by a lesion in a part
of your brain called the cerebellum, which controls complex voluntary muscle
movements, such as those involved in speech. Lesions in this part of the brain
cause tremors, also known as ataxia, which can affect a wide range of muscles,
from leg and arm muscles, to your head, vocal cords, and tongue. Tremors in
your vocal cords can result in sudden elongation of the vocal cords, causing
high pitch, or sudden shortening/loosening of the cords, causing low pitch.
When you lose your voice completely mid-sentence, which is called aphonia, what
happens is that the vocal folds or vocal cords separate suddenly and
unexpectedly.
Ok, but what does this have to do with swallowing an
imaginary chicken bone?
A lot…
For me there have been times when I can no longer speak, and
when I can my voice is very quiet and raspy. My throat hurts. Not like a sore
throat, but like I swallowed glass or a chicken bone. I cannot get my words
out. There are long pauses and gaps in my speech when I can talk. My eyes
water.
Eventually I lose the ability to speak for a moment. It lasts
for a minute, and then I spend the next few minutes to an hour clearing my
throat because it feels like something is stuck in it.
Glossopharyngeal
neuralgia is an irritation of the ninth cranial nerve causing extreme pain in
the back of the throat, tongue and ear. Attacks of intense, electric shock-like
pain can occur without warning or can be triggered by swallowing…
Patients describe
an attack as a burning or jabbing pain, or as an electrical shock that may last
a few seconds or minutes. Swallowing, chewing, talking, coughing, yawning or
laughing can trigger an attack. Some people describe the feeling of a sharp
object lodged in the throat…
Many believe that
the protective sheath of the nerve deteriorates, sending abnormal messages.
Like static in a telephone line, these abnormalities disrupt the normal signal
of the nerve and cause pain. Most often the damage is from a blood vessel
compressing the nerve. Other causes include
aging, multiple sclerosis, and nearby tumors.
Glossopharyngeal
neuralgia is caused by an improperly functioning glossopharyngeal nerve. The
reason for this malfunction cannot usually be determined, but often it is the
result of an artery putting pressure on the nerve. The condition can also develop as a
result of nerve damage caused by multiple sclerosis, and less frequently, as the result
of a tumor putting pressure on the glossopharyngeal nerve.
(https://www.sharecare.com/health/glossopharyngeal-neuralgia/what-causes-glossopharyngeal-neuralgia)
As I have said, and as you know…
MS is a painful disease.
And since we have been talking about the mouth and throat in
relation to talking and swallowing, let’s look at something else concerning the
face.
You know…for the fun of it…
What Is
Trigeminal Neuralgia?
The trigeminal nerve carries signals between the brain and the face.
Trigeminal neuralgia (TN) is a painful condition in which this nerve becomes
irritated.
The trigeminal nerve is one of 12 sets of cranial nerves. It’s responsible
for sending feeling or sensation from the brain to the face. The trigeminal
nerve is actually a pair of nerves: one extends along the left side of the
face, and one runs along the right side. Each of those nerves has three
branches, which is why it’s called the trigeminal nerve.
Symptoms of trigeminal neuralgia range from a constant ache to a sudden
intense stabbing pain in the jaw or face. Pain can be triggered by something as
simple as washing your face, brushing your teeth, or talking. Some people feel
warning signs like tingling or achiness prior to onset of pain. The pain may
feel like an electric shock or a burning sensation. It can last anywhere from a
few seconds to several minutes. In severe cases, it may last as long as an
hour.
About half of people with multiple
sclerosis (MS) suffer from chronic pain, according to the National
Multiple Sclerosis Society. Trigeminal neuralgia can be a source of extreme
pain in MS patients, and it’s known to be an early symptom of the condition.
Why is this
important?
Because
there are cases that people loose muscle control due to rouge nerves.
I’m not
talking about the pain because that’s a given.
I’m talking
specifically (in this case) about the mouth/jaw not functioning properly. There
are reported cases of Multiple Sclerosis being confused for “lock jaw”
when it comes to the mouth being unable to open or close. In all of the cases,
the patients had already been diagnosed with MS, but the connection wasn’t made
until later.
I have never seen this happen to anyone
that I know.
My wife may report things differently at
night when I’m sleeping on my back with my mouth opened wide snoring my ass
off. In that situation, she may say that I have lock jaw because I can’t shut
my mouth long enough for her to fall asleep.
In the end...
MS is unpredictable, and it can be scary,
but it is something that you can live with. It’s your life, don’t let MS define
you.
Tuesday, February 9, 2016
Do You See That Mist Rolling In…err…I Mean Fog?
I get confused and lost a lot. It is one thing to forget
what you need to get from the store, but it is a completely different “can of
worms” when you forget how to get to the store…
Or…
How you got to the store.
Cognitive
changes are common in people with MS — approximately half of all people with MS
will develop problems with cognition. Cognition refers to a range of high-level
brain functions, including the ability to learn and remember information;
organize, plan and problem-solve; focus, maintain and shift attention as
necessary; understand and use language; accurately perceive the environment;
and perform calculations. In MS, certain functions are more likely to be
affected than others:
- Memory (acquiring, retaining and
retrieving new information)
- Attention and concentration
(particularly divided attention)
- Information processing (dealing
with information gathered by the five senses)
- Executive functions (planning and
prioritizing)
- Visuospatial functions (visual
perception and constructional abilities)
- Verbal fluency (word-finding)
Certain
functions are likely to remain intact:
- General intellect
- Long-term (remote) memory
- Conversational skill
- Reading comprehension
A
person may experience difficulties in only one or two areas of cognitive
functioning or in several. Only 5-10 percent of people with MS develop problems
severe enough to interfere significantly with everyday activities. In very rare
instances, cognitive dysfunction may become so severe that the person can no
longer be cared for at home.
“Brain Fog” is frustrating in the fact that I can recall
conversations between me and someone else, pretty much word for word, but I
struggle to put toothpaste on my toothbrush.
I always think about what I am going to say, and I don’t apologize
for what I say because I never say anything on accident (I will apologize if
you somehow interpret it as something else).
Things change…
So yes it upsets me when I say the wrong word, knowing
(usually…sometimes) that it was the wrong word. I didn’t want to say it, but I
said it anyways.
I have no control over that piece of it.
So I end up looking foolish, mistaken, and unreliable.
Recently…
I was having a conversation with a guy, and I misspoke. I
didn’t know that I did. He caught it and pointed it out to me.
I paused and tried to recall the conversation in my head. I
do this because I am trying to capture those moments of error so that I can
learn to better help fight the disease, and to recognize issues. I do it then
and there so I don’t forget and it is fresh in my mind.
When I paused, the guy became a complete ass and a jerk. He
actually yelled at me because he interpreted “my look” as calling him a liar.
I didn’t call him a liar, and tried to explain to him that
“my look” was me questioning myself. I didn’t even realize that I had a “look”
when I am thinking.
He didn’t care, and the rest of the meeting went downhill
from there.
Not everyone cares…that’s life.
Moving on…
Check this out…
Have you noticed that simple things
you used to do on auto-pilot, like making a pot of coffee, seem more
complicated than they used to?
It happens to a lot of people with
MS. Often called “brain fog,” it can include forgetfulness, trouble
concentrating, and confusion. The disease can affect your thinking as well as
your body.
“There are lots of physical issues
that people with MS struggle with,” says Bart Rypma, associate professor of
behavioral and brain science at the University of Texas, Dallas. “But it’s the cognitive
changes -- slowing of thought -- that they experience most immediately.”
You may notice that you:
- Solve problems more slowly
- Forget appointments
- Lose track of conversations
- Can’t follow directions
- Need constant reminders about daily tasks
I’ve had cognitive issues for a decade, but they seem like
they are getting worse; a steady decline over the last five or six years;
making life that much more challenging.
It’s hard, but I am learning, and doing things to battle it.
On another note…
You may also hear “brain fog” being called “cog-fog” in
certain circles.
Check out this article by Donna
Sullivan titled “Embarrassing Cog-Fog Moments”
But when memory and cognition symptoms of multiple sclerosis commonly referred to as cog-fog roll in, it’s easy to feel that way. From that unable-to-focus-fuzzy-brain feeling to those black hole episodes when you have absolutely zero recollection of a conversation, commitment or event, these cog-fog moments can really make you feel like you are completely losing your mind. “What do you mean I made plans to meet you on Thursday?” and “of course I put the milk back in the microwave – doesn’t everyone?”
It’s frustrating when the wrong words come tumbling out of your mouth, or you walk over to your colleague’s desk and can’t remember why you came. You may feel like you need to put more effort into looking like you have your act together so that people around you don’t lose confidence in you, or think you are untrustworthy. You have MS, The last thing you want to do is to be treated like an Alzheimer’s patient, right?
Fake It Or Fess Up?
How you deal with these moments when they happen may influence how other people view you. You can ride it out with any non-related MS excuse that you can think of, from late nights out to a stressful week. Or even choose no explanation at all. Humor is often a great coping mechanism. And if you want to explain to someone, a bright smile and “oops, I must be having an MS moment” is one sure way to help others understand that it is your disease and not you.
Workplace Strategies
If you have not disclosed your MS diagnosis to your boss, or if you are at the workplace, you may not want to evoke unwanted attention or cause others to question if your multiple sclerosis is impacting job performance. This is where some common coping strategies can be a lifesaver.
• Organizing your environment
• Keeping a daily to-do list that is kept in the same place
• Having a consistent schedule that includes planning time
• Sticky notes, and electronic reminders are invaluable!
• Mnemonic devices: Songs and funny things are easier to remember, assign visuals and rhymes. Sound funny, but it works!
• Talk yourself through: verbal reinforcement is another great way to reinforce new information.
• Ask friends or coworkers to remind you
It is estimated that 65% of people living with MS will experience cognitive symptoms. So please know that you are not alone…
Often times, you may think others notice your deficits, when they may not. Remember, forgetfulness is not just an MS issue - it is a human issue.
(http://www.livinglikeyou.com/en/stories/detail/embarrassing-cog-fog-moments)
I use my phone’s calendar for everything. I set reminders. I rely on it a lot. I constantly check it because I am ridiculously busy, and because I can’t remember anything (or so it seems).
And if I don’t put it in the calendar right then…the task usually doesn’t happen.
Sad yes, but that’s my life, and so I make it a priority to capture everything that I need to do.
I don’t make excuses…
I make things happen by knowing my limitations and utilizing my resources.
Don’t be a statistic…
Be the person fighting for their life. The person who refuses to give in. Things change. You can either be proactive and drive the change, or you can get dragged behind; either way change is going to happen.
Saturday, January 30, 2016
The Invisible Vise of Head Pressure
Imagine standing in a doorway talking to another person.
Everything is normal (normal for you that is).
Then you feel it coming on…
- The tightening of your skull
- Head pressure
- Dizziness
- Vision fluctuating from blurry to blackness to blurry
- Hearing muffled
This was me the other day.
I was standing sideways in a doorway, my back resting on the
door frame. I was having a conversation with a person in the room. Outside of
the room (where the left side of my body was sticking out) there was a busy
atmosphere of business life.
I started to feel really weird, but I told myself that, “you
are not going to fall”.
I stretched my right leg out and firmly held it against the
opposite side of the doorway (where the door frame and the floor met).
I held my body there trying to look like nothing was wrong.
I tried to focus on the conversation (luckily the guy that I was talking with likes
to talk a lot…even more than me).
I was able to finally sit down.
The head pressure lightened up, but remained well into the
evening. Everything else passed within a few minutes.
Then…
It happened again on day two.
Then again on day three.
Nothing on day four.
Today is day five.
It is like your head is getting squeezed so tight that you
are on the verge of blacking out.
Some people say that it is part of the “MS Hug”, but instead
of the chest, it’s the head.
I don’t know what it is, but there are a lot of people
living with MS talking about it.
All that I know is that it sucks.
It’s not a headache…
It’s nothing like a headache.
If you want to experience it for yourself…
Wait until the WWE comes to your town. Get in the ring with an
inhumanly large wrestler. Have them put their hands on the side of your head.
Then have them squeeze your head so hard that you think that their hands may
actually come together. At the point where the pressure is too much to handle, and
where your vision and hearing are fading; have them hold it there for as long
as they can. Then release you.
Sounds fun right?
So fun that you want to do it again the next day…I did.
Tuesday, January 26, 2016
A Fantastic Explanation of Multiple Sclerosis
Recently, while scouring the World Wide Web, I came across this website,
and it is fantastic (per my title).
Not only is their website great, but so is their Facebook page.
So please check them out, share, and become more informed.
Enjoy the following...
You Know You Have MS When
You are probably all too familiar with the
typical symptoms
associated with having MS, like spasticity, cognitive impairment, fatigue, and difficulty with mobility, among many others. However, there’s so much more to having MS
than what one would find in a textbook. We wanted to know more about your
everyday life with MS, so we asked our Facebook
community to respond to the
statement, “You know you have MS when____.” We heard from over 150 of you, and
here’s what you had to say!
Your difficulty with mobility takes its toll
·
You walk like your 76
year-old mother and you’re only 41
·
When you trip a lot,
and have double vision
·
Your legs go out from
under you and your brain doesn’t know it
·
When you’re standing
still on a level floor and just tip over
·
You keep tripping up
over nothing and you continually drop things
·
When you can’t speak
correctly and have to hold onto walls because your balance is off
·
When no one realizes
how hard you’re trying to just keep up but everyone just keeps leaving you
behind
·
You fall over when
standing still, or stop mid sentence because you’ve lost your train of thought
·
You trip on air when
you’re walking on empty ground
·
When you feel good
enough to walk the dog and your legs feel like they are encased in cement after
just going around the block
·
When you can’t play
with your kids or take a walk with your husband; when at 42 your kids are
taking care of you
·
Your hands are asleep
and they don’t wake up, of course your feet too, hence tripping and dropping
·
When I kept falling,
tripping, and my legs hurt
·
You walk like you are
dancing to Michael Jackson’s “Thriller”
·
When your knees are
locked as though there’s a magnet holding them together!
·
You get to work and
wonder if you can lift your legs to get up the four stairs to get into the
building
·
You trip over
something earlier in the day because of ‘drop foot’ on the left leg and before
bedtime you look at your scraped toes and say “what the heck happened to my
toes
·
Your legs are numb and
you can’t walk very well
·
You can’t stand
without assistance
When everybody knows your name
·
When you know the MRI
tech by his first name, and he remembers which arm you prefer to use for the
contrast dye
·
When the MRI guy knows
you by name
You appear to have had too much to drink
·
When you look drunk
walking BUT have not had any or been near any alcohol!
·
You walk like a drunk
even though you don’t drink
·
When you can’t pass a
field sobriety test sober
·
When u walk like
you’re drunk
·
You walk like you’re
drunk and haven’t had the pleasure of drinking
·
Sunlight/heat/humidity
in the summertime drive you indoors like a vampire, when previously it was your
favorite season of the year
·
Hot weather kicks your
b-u-t t
·
You’re the only one in
the room saying, ‘Is it hot in here?’
·
When 70 degrees feels
like you’re standing inside of an oven & everything goes numb and blurry
·
When you can’t do any
outdoor activities due the heat
·
When 69 degrees is too
hot for you and you sleep with fans blowing on high at you with multiple ice
packs
·
When summer heat hits
the triple digits and you can barely breathe
·
What was the question?
·
You are in the middle
of a conversation and you forget what you were supposed to be talking about or
you can’t remember the word you wanted to say!
·
You lose your train of
thought mid-sentence
·
When you walk into a
room and forgot why you went in there? Or going out to eat and your brain is
literally blank when you’re supposed to choose
·
You have the hardest
times trying to say what you want to say because your words come out making no
sense
·
When your words get
jumbled up at the end of a sentence
·
Umm…what was the
question?
·
When I struggle to
speak and can’t form and remember words
·
You describe your
symptoms and your neurologist looks at you as if you were speaking Greek
·
When you forget
everything
·
You get confused when
there is too much going on around you; you can’t even place an order at a fast
foot place
·
When you can’t
remember anything and can’t get your words together
·
You can’t remember
anything
·
You forgot you had MS
People assume that you are fine
·
When everyone thinks
you are normal and they say let’s go, get with it
·
Your friends &
family think you’re fine (you look the same) and are just being anti-social
·
When I have all these
problems mentioned but I “don’t look sick!”
·
When you hear “but you
look so good”
·
Everyone thinks you
LOOK ok so you should be fine.
·
You get angry hearing”
gee, you can be feeling anything bad…you look too good”
·
When you want to hit
the next person to say “But you look so good!
·
You feel awful and
can’t think straight but look awesome
·
When you never, ever
feel like you’re well rested or have gotten enough sleep
·
You’re so exhausted
(and you just slept most of the night) and you get worn out just getting up to
wash your hair
·
When you wake after 8
hours of sleep (if it’s a good night without insomnia) and feel like someone
used your body to run a marathon, got mugged on the way back and returned it
for you to get out of bed with
·
When my daughters tell
me all I do is sleep and that I’m sick all the time
·
You get a full night
of sleep and wake up tired
·
When everyone says, ”
You look tired. What’d you do last night” and you reply “Nothing. I’m always
tired
·
You’re too tired to
get up but you just end up lying around in bed with anxieties about what you
should be doing
·
You wake up with a
little bit of energy, bounce upstairs & fix breakfast. Ah, there went the
energy. Exhausted by this simple task, you must lay down again to rest
·
Your battery depletes
after 45 minutes of walking and you become a complete physical mess on your
feet
·
When you are tired or
fatigued all the time
·
You can’t find the
energy to take a shower
·
You are so fatigued
you can hardly get out of the chair to take a shower, and you know when you
finish you won’t have the energy left to go anywhere or do anything, even in
the wheelchair
·
You’re tired and dizzy
all the time
·
You are so tired that
you cry and you do, and no amount of sleep helps
·
Your body feels like
you got into a fight with Mike Tyson, got run over by a semi, and were then
kicked over to the side of the road. You can’t get up, even if you wanted to.
You are in excruciating pain, everywhere, and it feels like you’re half dead
·
When you’re screaming
from pain as what feels like loose electric wires whip out of control at the
base of your spine
·
Limbs hurt for no
reason
·
When you feel like you
are being stabbed and you tingling feeling all over
·
Your vision is blurred
but you never complain and you smile regardless
·
When your feet feel
like they are on fire or frostbite
·
When you get those
unexpected zaps of excruciating pain in your face, arm, leg, and you have stand
there trying not to scream
·
When you’re screaming
from pain as what feels like loose electric wires whip out of control at the
base of your spine
·
When you feel
continual electric shocks down one whole side of your body that are strong enough
to make you gasp aloud. When your knee just buckles when you least expect it to
You feel like you are losing control of your
body
·
When the top of you
starts to walk and your legs don’t get the memo in time
·
Your head goes one way
and your legs another
·
When you have to look
at your hand and tell it to move
·
When you’re eating and
your arm suddenly jerks and the food goes flying across the table
·
One of your limbs
decides it’s just not going to function, right about when you need it to
·
When I pee my pants in
the middle of a store
·
When you are in the
market and the fireman are grocery shopping and they stop you because your face
is drooping and you are confused and they think you have had a stroke
·
You do a great
impression of Ray Charles and go blind
·
When you go from 0 to
pee in two seconds flat! Where’s the restroom
·
When you wake up one
morning and you’re paralyzed on one side of your whole body
·
Your legs r numb and
your vision isn’t right
·
When you can’t feel
your fingers but you feel like you’re walking on rocks
·
Numbing leg and a hug
that does not stop hugging
·
You feel like you are
sitting in a wet bathing suit because your b-u-t t is numb
·
When you are numb and
tingly and have burning sensations all over
·
When you feel like you
have warm pee running down your legs and go to feel and nope it just your
nerves
·
Your legs feel like
rubber
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