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Day: June 26, 2020

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!