My new personalized definition - Functional Neurol...

Functional Neurological Disorder - FND Hope

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My new personalized definition

8 Replies

Hello to all friends.

I preface this post with two definitions:

Physiology -

the branch of biology that deals with the normal functions of living organisms and their parts.

Physiological -

of or consistent with an organism's normal functioning.

Okay. Now you can start laughing because this post gets funny from here....

I have read the frustrations with the label FND. I agree in total. I think the phrase "functional neurological disorder" as a given medical diagnosis belongs out back in my compost pile with all of the other decomposing material. It means absolutely nothing to me. In fact, it is used against me by the medical profession when I seek care. The providers who reference it either want me out of their medical office or they use it to create suspect services to produce billable revenue.

Okay. Enough criticism and negativity.

To extract myself from this quicksand, I am going to rename my disorder to something which works for me personally. If you want a name for your condition, I encourage you to go through the same exercise.

MY PERSONAL DIAGNOSIS FROM NOW OWN:

With the two definitions I provided above, I have decided that my condition is based on the abnormal functioning of my body systems. In other words, I have abnormal physiology in that I no longer function normally as a living organism.

Keep laughing....

I do not particularly care where the abnormality originates. This frees me up to not think about whether the problem comes from my brain or whether it is outside the brain or whether it comes from a combination of the two.

Instead, I look at this as being purely abnormal from an organism standpoint. Laugh harder as you can say you already knew that about me. My response is that I was never meant to function the way I am having to function now. This reassures me that the efforts to re-train my brain or re-route my flawed circuitry to conform to these abnormalities is not the long term solution for me. Even though I have adapted my behaviors over years of chronic and evolving symptoms - mostly just to survive - I am still ending up at the same place which for me is a loss of more function and faculty.

Now stop laughing.

FND is not my diagnosis. Abnormal physiology or physiological systems is my diagnosis. I even accept that in my case that abnormality is nervous system related.

To top it all off, since I do not know the cause, the abnormalities I have, are - you guessed it - a "problem."

My disorder is now known as -

Abnormal Physiologic Problem (involving the nervous system)

And, for those of you of the digital generation, the acronym for that is APP. I have no intention of trademark or patent infringement or stealing anybody's thunder, but for my own personal use.... I have an APP of the nervous system.

And that makes me feel a lot better about not knowing the cause. Most likely, I never will know the cause but now I can be at peace with it.

Good night to all. Rest well.

Dan / Seattle, WA

8 Replies
cgarff profile image
cgarff

Dan you ROCK!!! I love it, and you did make me laugh. I have to add that to my other one I liked was FND: Frankly No Diagnosis. They are both awesome!

in reply to cgarff

Yes Cheryl.

That diagnosis was a favorite as well. We all have to come out from under the rock now and face the fact we have lost our normalcy. It is time to face what we already know.

Our family's love.

Dan

LEEJUNFAN profile image
LEEJUNFAN

Hi Dan!

Just read your blog on the bus.

We understand where you're coming from and you're thinking outside the box.

That's a good thing to do.

We've lost count of the the times people have replied to us outside asking,

"What's FND" ?

Even Nurses!

Ok Dan, I'm off now to see what I could possibly call Kim! Ha ha

Love & best wishes

Tony & Kim

PS!

Just make sure you don't forget your wife's Valentines card & chocolates!!

in reply to LEEJUNFAN

Tony and Kim.

Valentines being homemade at the kitchen table as we speak. Have to get a ride to Pike Place Market to buy the bouquet and tip those wonderful florists who are on their feet all day. Yet every bouquet is wrapped in love.

Specialty chocolates are easy. Promise is Tricia has to share. Andrea will get her own box as she watches her treats like a hawk.

Let me know what you guys come up with name. Getting all of us out of the box is goal. We can do it.

Dan

ukmsmi4 profile image
ukmsmi4

Love it! Certainly helps to keep a sense of humour and that did make me laugh!

If only there was an 'app' to cure it.

How about SATNAV. Spasms and twitches, nasty and varied. And as I don't know where I'm going in life these days, my SATNAV must be on the blink.

Gentle hugs, Margaret. xxx :)

in reply to ukmsmi4

Margaret.

Along with a break in the clouds here in Seattle, your post brings a great big smile on this Sunday morning.

I keep checking my phone for "cure" to download.

I love SATNAV. Much better.... I want to take that one to Atlanta conference and give it a human voice of someone in the throes of this battle.

Try and get the "com link" to SATNAV back up so the day brightens.

Hugs all around. It's a good start

Dan / Seattle

ukmsmi4 profile image
ukmsmi4 in reply to

Ooh just had a thought. On a bad day it could be nasty and vicious as my husband says some of my worst twitches seem to almost knock me off my feet!

Don't know about you Dan but I have ME (myalgic encephalomyelitis), FM (fibromyalgia), RLS (restless leg syndrome) and now FND. Although the neurologist insisted on calling it functional movement disorder and stressing that there is nothing neurological going on! Along with lots of other more minor acronym conditions like PND (post nasal drip) and IBS - sure you know that one.

With all that going on I am in constant pain and around 95% housebound. Now I've got a new game to relieve the pain and the boredom. Thinking up better names to go with the meaningless acronyms of the meaningless names of my conditions. Most of which I personally believe are yet more new and different symptoms of my ME, which IS classified as neurological by the WHO.

Been a dreary day here in Cheltenham UK so you've brightened my day up.

Take care. x

OK Margaret. You have given me months of internet stuff to look up and try to comprehend. And I thought I was up on research. Not as smart as I thought. Also want to find out where Cheltenham is on map.

Commonality is being housebound. Thus my site name of houseman. I do get a bit of cleaning, laundry and cookin' done for family so I can still cling to being a little more useful than Panzy our cat. A small panther that one is...

My doctor's so far behind the curve, they can not figure out how it is I do not have a Huntington's look alike disease or how I passed the test for not having stiff person syndrome or why the dang it they can't find ion channelopathy in their medical dictionary. Truth is, it just easier to call me crazy while watching me in full body violent convulsions from a complex movement disorder with motor symptoms while the organic and systemic nerve degeneration spreads like a Washington wildfire. They open up the betting parlors on the convulsions to see odds of self levitation without David Copperfield showing there is no trap door.

Well, have to go find out now if ME is worth starting another medical confrontation over having more tests. As we say back home in the South, if your blood don't turn blue again after they draw it, then you must not be a blue blood.... Obviously I am not important enough for yet another label. Maybe we race for how many...

Take care. May the pain ease if only for a moment. You go into my prayers.

Dan

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