Category: Death

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?