Good afternoon. My inquiry to a large national healthcare provider yesterday produced a reply that I will share.
The inquiry was directed at the research level in the organization to find out if there were any study initiatives underway or had been completed pertaining to FND.
The short answer is they were not aware of any within their research division..
That answer has led me today to issue a broader scope two page letter addressed to four management level employees of that large organization to ask the question why there has not been research or care delivery attention focused on FND in their organization. They have over ten million members.
I have "standing" within that organization to ask this question because I am an enrolled member receiving care.
It may be a while for feedback.
The focus remains on addressing issues of ethics, research and delivery of care for patients with medically unexplained neurological symptoms.
All I can say is we keep trying to roll the ball forward. But it is a great big ball. Holy dysfunction batman!
Dan, that is a brilliant way to educate your insurance companies. We need more people like you who are prepared to stand up and be counted, with creative, outside the box ideas like this one.
I am really humbled to hear your words. I never know what to do with big corporations even though I used to work in them. So I just try to tell the truth and let them figure it out from there. If lucky to find anyone that cares, then maybe health dollars go to helping sufferers instead of avoiding them. I am not the plague...even though the re-run of "The X-files" we all watched on TV last night may have had something similar as the person was all covered up in some kind of fungi. Creepy!
Vivienne, will probe into what Mayo Clinics is doing next. Met a very nice and supportive professional from there while at conference. As always, I send you my highest respect for your thoughts and well wishes for a day of better health.
This is Dan singing Kiss from a Rose! I'M KIDDING!! I just want to make ye smile...wait until 2:34 into the song!! xx
in reply to
C-B-S
That is fantastic. I keep watching myself sing over and over in this video trying to understand what the words are... How could I not know that. Oh, this was so funny. I'm gonna wake Tricia up if I don't stop laughing out loud.
The slap near the end was hysterical. It was on the same side of my face that spasms up so bad. And I didn't even know I was slapping it. Great physio therapy right there on the screen!
I do recollect that "Batman" theme riff at the end. And my work uniform... Oh yeah... It's all coming back to me now.... I can remember.... Do you think.... Is it possible? Oh God, let me go check the car in the garage! .... Oh, wait, they took my driving license last year because I move funny.... Oh well, I just go back and watch the video again and again and again......
This is best present to receive. Like Christmas morning...
This weekend is our 40th wedding anniversary. I am going to honor Tricia with a song! Now where are those words...
Love you C-B-S. Made my day start right.
Dan / Seattle
in reply to
Oh WOW Dan!!! what a truly beautiful response. I am sooo glad it made you smile! And for the others that liked it! Happy Happy 40th Wedding Anniversary to you and Tricia. What an amazing achievement of love and loyalty you have for each other! It cracks me up too as I get the stuttering speech with my symptoms and I can never sing this song in my head anymore without doing that part that he does hahah
Good work Dan well done and thank you for being our voice . I hope you finnaly get to here back from one of them atleast , that will atleast show us all there is someone acutely listening to our crus for help .
I will follow these people like a dog in the woods of North Georgia until something moves out of the bushes. We used to say "flush it out boy" and we would all just wait to see what happened.
There are many good people who will want to help. I just know that will be the case because a lot of good comes out of medicine over time. We will try to get attention. I make a good beggar.
Hang on. Let's try and enjoy the journey. Something will shake loose. I have faith. May you have a better weekend.
Thank you. I would not get anywhere without people like you. That said, I do not feel like I am getting anywhere - yet. This is a huge challenge that will make lots of people upset just because so many ( but not the sufferers ! ) were getting comfortable sitting at their desks in the medical suites with where this was headed.
Hope it is as beautiful there as it is here today. Enjoying 40th wedding anniversary with Tricia today. Kids came in and gave us surprise dinner party. We all cried. Talk again soon.
Belated best wishes to you and Matt. These are always very special days. Take care.
Dan / Seattle
Happy anniversary dan, hope it's gone really well and all happy. Lisa 🍾🍹💐🌹🎂🏅🎈🎉🎊
in reply to
Lisa-anne
Thank you for your wishes. I am a very lucky person to get to share my life with Tricia.
Beautiful sunrise over the mountains today.
Just watching it.
Dan / Seattle
in reply to
Sounds heavenly to see, unfortunately my view is of our gate and fences, my partner has seen some of America but I've never been, always something you might do in the future but have to work and save. My partner Trevor is going to put solar lights all over garden this summer so I can watch them through the night and enjoy them, I will look forward to this, it will be my mountain. Kindest regards Lisa. 😊
in reply to
Lisa-anne.
I love solar lights. We use them in our patio garden and pretend to make a paradise.
Tell Trevor hello for me. I send a big smile knowing that Trevor is there with you.
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Anyone had experience with getting care for FND in prison (UK)?
Hoping to find support
Its been a long time since this all started! 
Don't give up hope everybody
FND diagnosis and if you've been given help.
