lifedeath blog – Page 3 – Conrad Birmingham

Functional Neurological Disorder

I was diagnosed with Functional Neurological Disorder (FND) on Wednesday on July 8th. According to National Organization for Rare Diseases, FND is a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals, rather than a structural disease process such as multiple sclerosis, Parkinson or stroke.” This disorder is an improvement over my self diagnosed diseases and disorders. I am happy that I have it than the other alternatives.

For six years, I have struggled with a many weird issues which came and went at random. These issues are unpredictable and debilitating. I struggled with the unknown. When no one tells you, what is wrong with you, then you begin to wander through the possibilities. I found and latched on to Progressive Supranuclear Palsy (PSP) two years ago. I had 8 of 12 symptoms, and it was the only disease or disorder that described me. The doctors did not think I had it because I was too strong, but what were the alternatives? I sank into depression and anxiety.

I ran the gambit of possibilities. How long do I last? Will it be a painful death? Will I make it three years? Will I suffer? I did not believe the doctors who said you are too strong because they were not giving me any alternatives. These were no solutions; just wait until it manifests itself.

I did not want to wait until it manifests itself. I wanted answers now. Who wants to wait until it manifests itself, and then they say, “Oh, you had PSP sorry. Now, you will die in a year or 2.” To me, that was pure craziness!

A few weeks ago, Cynthia (Smart Girl) found Functional Neurological Disorder (FND), and we studied upon it on various websites. I got an appointment with a doctor in Little Rock who understood FND. I found him on FNDhope.org. I made an appointment with Dr. Andrews.

I visited Dr. Andrews on Wednesday, July 8th. Dr. Andrews and I talked for an hour. He says, yes, you have Functional Neurological Disorder, and Dr. Andrews believes my right leg trauma with knee replacement, hip surgery, and replacement and blood clots with the extreme pain made FND activate. I was delighted when he said you are too strong for PSP, and since Mayo and Vanderbilt have eliminated all possible physical symptoms, it has to be FND. I went from a disorder with a death sentence to a disorder you can learn to live with through training.

You must learn what triggers your disorder or attacks so you can react to the triggers better. Also, you need to learn how to reset the triggers to get back to normal as quickly as possible.
Here is a laundry list of things that I need to do to help myself:

• Keep exercising
• Keep doing yoga
• Keep eating a healthy diet
• Learn Cognitive Behavioral Therapy (CBT)
• Learn Dialectical Behavioral Therapy (DBT)
• Simplify your life
• Keep it simple
• Learn triggers
• Avoid triggers
• Minimize triggers
• Learn resets – stutter or unable to speak than sing a song and can not walk forwards then walk backwards
• Beware if you disliked something before disorder, then you hate it now.

Here are some examples of what I disliked before, and I now hate:

• I was not too fond of crowds, so crowds activate my symptoms.
• I did not like liars. Now, I hate liars.
• I did not like injustice? I despise injustice.
• I was intolerant of emotional hot-air rhetoric. I wouldn’t say I like rhetoric.
• I do not like drawn-out stories. Now, I have no patience for a long story.
• I do not enjoy genealogy (stuff with past). Wow, I guess it is a huge trigger.

These triggers can set me off to be rude, angry, or go to rage. Big problem!! I have always been feisty, argumentative, fiery, but it is a new uncontrollable level.

I have to learn to deactivate these triggers and not to let them bother me. I hope CBT and DBT give me the tools to do that.

Does anyone know any resets for triggers or a good list of reboots like singing a song for stutter and walk backwards to reset unable to step forward?

When Do You Live

When Do You Live
 
I do not know
When you live
You must tiptoe
The issue to survive
 
Survive abuse
Survive intolerance
Survive hatred
Survive injustice
 
Kill a baby
Whenever you want
Alive maybe
All so nonchalant
 
Womans rights are first
No exceptions
What can be worse
Than ignorant misconceptions
 
When does life begin
Christians believe at conception
Science has many spins
And fixed perceptions
 
Is life when DNA completes at 3 days
Is life when the heart beats at 24 days
Is life when brain waves are recorded at 43 days
Is life when a baby can live outside the womb at 140 days
 
Or is life when a woman decides
I can abort my unique child
And the world ultimately divides
The world goes crazy wild
 
One side says control my life
Damn human life
One side says save every life
Precious human life
 
Who is responsible for human health
Is it each 3.8 billion women on the globe
Or is it the elected commonwealth
Or some unelected justice in a black robe
 
Every human being is responsible for these losses
You can not hide behind a lack of knowledge
You can not hide behind your crosses
You must reasonably acknowledge
 
At 20 weeks it can live outside the womb
Start here and make the laws the same
Bring everyone who cares in the room
And quit the shame and blame game

Smart Girl

Smart Girl has improved my life three times in the past two years. I am grateful for her help by reducing my anxiety, solving my leg pain issues, and identifying a possible explanation for my ongoing illness.

I recognize Smart Girl (Cynthia), and her daughter pulled me out of the pit of despair, allowing me to see there is hope, and there is a great deal of life to experience. They encouraged me to keep my journey going and do not give up. Cynthia and Elizabeth (EB) are the best friends anyone can ever possess. We experienced life together traveling many places, building sandcastles, attending an Arkansas football game, watching movies and cartoons, playing chess, building Legos, reading books, doing homework, eating breakfast, lunch or dinner, walking Sweetie Pie, taking and picking EB up to school and playing all types of sports including swimming, catching the ball, throwing the ball, swinging the bat, striking golf balls, shooting basketballs, rolling bowling balls, throwing darts, bicycling, walking, and laser tag. We had a great time, and I never thought I would experience life like that again. Thank you.

Smart Girl worked for Patterson Physical Therapy, and she identified and correcting the problems with my right leg. I went from constant step by step pain every minute of the day. My pain varied from hardly any pain to pain all the time. Patterson Physical Therapy identified my hip to heel ratio was out ten percent, and I was walking sideways. A few shoe inserts and I had instant pain relief. I want to thank them for solving the problem when many doctors, physical therapists, and chiropractors could not over five years. When you are not in constant pain, you can enjoy life, and you can experience it so much more.

In June 2020, Smart Girl presented Functional Neurological Disorder (FND) as a potential identification of my ongoing illness. No one has diagnosed me with this disorder, but it is a better option than PSP. When I read the information that she sent me, it described me perfectly. I did a blog about FNA.

I wrote this poem over a year ago, and it is in my book. I think very highly of Smart Girl, and I am publishing what she has done for me in my blog. I appreciate her dedication to my health. Thank you.

Smart Girl
 
I recognized your smart
And very astute
It grabbed my heart
And I started the pursuit
 
You are very pretty
So adorable
Witty
Certainly not ignorable
 
Your appearance is striking
Blue eyes mesmerizing
Gazing at you and never tiring
So so energizing
 
I did not know what to expect
Wondering if I could ask
Could we connect
It would be a mighty task
 
You have a daughter
Live with your parents
We are moving through white water
But you are not embarrassed
 
You do not text
Are very independent
What comes next
Certainly not dependence
 
A single mother
Living life  
Facing challenges one after another
Needing a Swiss army knife
 
Sometimes overwhelmed
Sometimes quite well
Certainly compelled
Not to walk on eggshells
 
What do I see
What do I believe
Do not disagree
Or deceive
 
Celebrate she is special
Celebrate her resolve
Give her a medal
Watch her evolve
 
You are unique
A mystery
A good deal of mystique
But you have lived a real life history
 
So many illnesses
So many miseries
So many sicknesses
So many memories
 
It makes me seek you more
You are so strong
It could be a love affair
But more two friends traveling along
 
I like you
You are so fresh
How do I pursue
So we mesh
 
Patience is good
Do not smother
Wait, in all likelihood
We will find each other
 
Friends
Buddies
Our relationship will pay dividends
It will be very sunny
 
A warming experience
Soothing to our bones
Reducing the weariness
Eliminating the groans
 
It makes me smile
It makes me laugh
Worthwhile
I cannot wait for the next paragraph

Functional Neurological Disorder

Functional Neurological Disorder or Conversion Disorder

I have battled a health issue for six years with no diagnosis, just endless symptoms, and doctor visits. The symptoms are debilitating, but the worse part is they come and go like the wind. One minute I feel good and the next minute I feel awful. One-minute functioning and the next minute dysfunctioning. I minute normal and the next abnormal.

The doctor visits were intense. I saw over 45 doctors in the past six years. The doctors would talk to you and do all types of tests – brain tests, MRI’s, MRA”s inner ear tests, heart, lungs, knee and hip specialist, blood clot specialist, blood pressure, toxicology, EEG’s, EMG’s, anxiety exams, depression exams, etc. The doctors were from the best medical centers in the world – Mayo Clinic and Vanderbilt. They did not find anything wrong with me except anxiety and depression. All you need is a pill, and you will be better. The best line from the doctors was just wait until it manifests itself. Really, I am trying to live!

Of course, I am going to be anxious and depressed. Duh! I am falling backwards thousands of times and bless the Lord that I have hit the ground only ten times. I lose words, and I can not say what is on my mind. The sunlight shuts me down, making me retreat into myself. I close my eyes, and I cannot function. I fall left to right wobbling. These are daily occurrences. There are so many other symptoms that happen sporadically. I find it amusing the funny situations that I have experienced in the past six years.

For two years, the only disease that was close to my symptoms was Progressive Supranuclear Palsy (PSP). This is an undiagnosed disease that eats away at you until you die. No one says you have it until the end when you cannot walk, talk, or eat. They autopsy you to see your tau proteins bunched up on your brain. Yes, you had PSP. Wow! How nice! My adamant supporter, Smart Girl did not think I had it because I was not getting weaker physically, and I did not have a Parkinsonian look, which is present in PSP. When this is the only disease that fits all your symptoms, it is hard not to latch on to this disease. Gosh, I want to put a name to it. I want to know what is wrong with me. I want to be in control. Control of what? PSP is a killer. PSP is an ugly death. PSP is not merciful. PSP is painful. PSP is torture.

Last week (June 2020), my adamant supporter or I call her Smart Girl located Functional Neurological Disorder. What is that? I have never heard of that disorder. I do not remember any doctor, including many neurologists, mention it to me. They never even suggested it was a possibility.

What is Functional Neurological Disorder?

Functional neurological disorder (FND) is a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals, rather than a structural disease process such as multiple sclerosis or stroke.

Functional Neurological Disorder

What are the symptoms?

FND patients can experience a wide range and combination of symptoms that are physical, sensory and/or cognitive. The most common include:

Motor dysfunction
• Functional limb weakness/paralysis
• Functional movement disorders; including tremor, spasms (dystonia), jerky movements (myoclonus) and problems walking (gait disorder)
• Functional speech symptoms; including whispering speech (dysphonia), slurred or stuttering speech

Sensory dysfunction
• Functional sensory disturbance includes altered sensation; e.g. numbness, tingling or pain in the face, torso or limbs. This often occurs on one side of the body
• Functional visual symptoms; including loss of vision or double vision

Episodes of altered awareness
• Dissociative (non-epileptic) seizures, blackouts and faints: these symptoms can overlap and can look like epileptic seizures or faints (syncope)

Symptoms often fluctuate and may vary from day to day or be present all the time. Some patients with FND may experience substantial or even complete remission followed by sudden relapses of symptoms.

Other physical and psychological symptoms are commonly experienced by patients with FND but may not be present. These include: chronic pains, fatigue, sleep problems, memory symptoms, bowel and bladder symptoms, anxiety and depression.

Functional Neurological Disorder

Yes, I have many of those symptoms, and they come and go. Is this a real disorder or just a junk drawer for people who are messed up, but there is no diagnosis for me yet? I do not care. I rather think I have FND (live) versus PSP (die).

Is there a treatment?

Yes, I have new doctors to see and new treatments to try – CBT and ACT. I must be more self-aware of what triggers my symptoms. I must learn techniques to reset myself once symptoms start. My favorite is when I cannot pronounce words or get them out of my mouth then sing a song. I sing “Everyday with Jesus,” and then I can pronounce the word or get it out of my mouth. How wonderful is that! In one week, we have found one reset. How exciting. Now, I am looking for triggers to stop symptoms before they happen and for reset techniques to get me back to normal as soon as possible.

Praise

I praise God for the blessing in my life. In the past two weeks, God put Smart Girl in my life. She found this disorder, she made me aware of the disorder, and she helped me with the first symptom reset. Two, the Lord gave me hope and endurance. The Lord gave me the will to enjoy each day and to live. Thank you, God!

Battle of Nerves vs Mental

Battle of Nerves vs Mental
 
What to do next
I wander about
I am perplexed
I want to shout
 
Leave me alone
Let me be
I want to moan
But then there is she
 
She is Smart Girl
She will not let me quit
She is a rare precious pearl
She has much grit
 
You are fine
You are curable
Quit your whine
You are endurable
 
Your lungs sing a song
Your heart is exceptionally good
Your muscles are strong
You are a forest of maple wood
 
You fall and almost fall
You have bouts and seasons
Where you hit a wall
Without any reasons
 
No one has diagnosed you
Telling you anything
No reason to worry and stew
Anxiety and depression sting
 
Worse than your illness
Quit being an awful bore
Live each day in its brilliance
Open the morning door and roar
 
Life is noble and grand
Life is pleasing and sweet
Life is unexplored land
Life is a delicious treat
 
Smart Girl wants to pursue
Conversion disorder and
Functional neurological disorder
Which is fine with me
 
The brain and nervous mechanisms
Do not efficiently communicate
Resulting in many schisms
In my neurological state
 
Somewhere between nerves and mental
Everyone knows I am crazy
But let us not be judgmental
We all can be a little hazy
 
Good news I believe
Continue the medical journey
Looking for reprieve
After six years of a debilitating tourney
 
What is a year or two more
Smart Girl motivates me
To continue the unfair war
And I agree