Barometric Pressure As the pressure drops Like a stone from a tower My health flops By each minute and hour I lock up Slowing down Drinking my death cup I flounder and drown Unable to function Unable to comprehend Unable to function Unable to live A robotic zombie Floating along Unstable and wonky This is my song A song of lostness A song of worthlessness A song of smallness A song of nervousness How long will this go on This morbid journey Until my symptoms are gone And I am back in lifes tourney Functioning normal Thinking and talking Not feeling abnormal Functioning and walking Living a normal life A life of normality No continuous strife Just a life of vitality Once again I am patient and await The barometric train To steam forward reducing its weight Arriving at my station Which it always does Creating a new period of gestation And my symptoms fizz I walk and wake from my stupor As the train passes Slowly reducing my stooper Not slow and thick as molasses But normal and bright Clear headed My symptoms in flight Completely broken and shredded Back in the living Where life is good Another season of thanksgiving Living as I should
Category: PSP
Barometric Pressure Nightmare
This is my latest book. It is personal. I suffer greatly when the barometric pressure drops.
When the atmospheric pressure drops, it influences my body. The swollen tissue presses against my joints, making them very painful and difficult to move. My arthritis in the ankle and right and left legs from knee and hip replacements and my eleven blood clots make it even worse when the barometric pressure changes. Blood flow is reduced due to constricted veins, which result in dizziness and confusion. When this happens, I become lethargic, not wanting to talk or socialize. This leads to me becoming grumpy and gruff.
Barometric Pressure Nightmare
Functional Neurological Disorder
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?
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.
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.
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!