Left Atlanta early Saturday after cutting short my conference attendance. Now in Tennessee visiting family before returning to Seattle. Actually, holed up in a hotel room fighting to stabilize symptoms.
Struggled with health Friday while attending. Downhill thereafter. I know you all understand this process.
My first report of findings to you is blunt. While I attended several of Friday's sessions, it is probably unfair to say I bring you a fair opinion of efforts to address our problem.
I felt a distinct lack of consensus among healthcare providers. I noted infighting and hostility towards our disease. They talked "about us" as patients but few talked "to us."
Doctors seemed lost. Some were afraid. Imagine being afraid of us! Some of the most basic tenants of our disease are still in dispute. I found little resolution and saw very hard-line positions. There was no evidence on building infrastructure for how to screen, intake, diagnose, treat and perform follow up care for mainstream sufferers. Family support concepts are generally nonexistent. Leadership seems years away.
USA is severely lagging UK in helping sufferers. Have doubts that USA will ever produce quality care.
Bright side:
Advocacy thru FND.Hope shines through. Bridget was true warrior and stood tall in defense of what we experience. I have come to realize that people like Lauren (known as Seaotter2020) who volunteers countless hours of support, is another true warrior for us. They have earned my highest respect for their efforts. I have learned there are 30 others who serve in valuable volunteer roles. Vivienne and Andy, I salute you as well. What strength we have! Thank you.
I did hand deliver our questions. First, to Bridget. Then, I isolated one doctor in the group from Mayo Clinic. She spoke closest to our needs. I had an intense conversation with her. She took the other 54 copies of our questions and got them properly routed to the conference moderator.
Interestingly, that moderator sought out my family several times before we left for day. At one point, she said she did not know how to address some of these questions. We pointed out that these questions were the concerns of her patients! Implied was she had no choice but to consider them all. In frustration, my daughter simply asked that she make the questions available to all in attendance. They need to know. The moderator looked perplexed at us. We left.
In big picture look, I would tell you that healthcare providers are looking at how to create care delivery system that works for them. They are searching for a way that they can manage this process within the context of their medical practice. They are not close to thinking about how to benefit the patient.
Folks, we need to have conversation about where we are. It is imperative that we talk as patients. We are going to have to tell the healthcare system how they are going to treat us and our family. It will be no small task.
I give thanks to my wife Patricia and my daughter Andrea for attending, listening (often better than me) and for engaging others in conversation. I give thanks to other patients who attended - hi Cheryl - we luv you! I give thanks to family and caregivers who were there. It was a show of great support.
I give thanks to all in this community. You too are warriors.
I give thanks to God for opening my eyes and heart.
Symptoms re-emerging. Time to rest.
With renewed respect and passion but humble in service.
You are full of beautiful kindness. I am incapacitated right now but heart touched by message. The river flows with caring souls who are so strong. I keep seeing Seaotter2020 as the image of that strength. I see my wife and two daughters as image of that strength. I see Bridget and whole community as I see you as being that strength. I see God as provider of all strength. I am but pebble in river landing on the shores of horizon of light. We gonna have to pull up our suspenders on our pants and help ourselves to climb out of this mess. I hold out a single hand to help. I need you all. We need each other.
Thank you Dan. I'm sure we all know just how much this must take out of you so please know we are truly grateful.
From my perspective your story so far sounds all too familiar. My 4 main conditions are ME, Fibromyalgia, Restless Leg Syndrome and FND. It seems the lack of knowledge, care and support for all these conditions is a major issue. Some minor differences but the overall result is massive amounts of neglect - at best!
Surprised at what you say about the UK being ahead of US. That is absolutely not the case for ME so I assumed it would be the same for most other so-called invisible conditions.
Also interested that you say the doctors were scared of the patients. Do you think perhaps the truth is they are scared that they know less about the condition than the patients do and that impacts their authority image? By that I mean a doctor is supposed to be more knowledgeable than us and able to 'fix' us, so must feel unsettled that we present them with problems they don't know how to fix. They don't seem to realise most of us would rather they just said sorry not sure yet but will try my best. Just a thought.
Nevertheless I look forward to hearing the full report.
Please remember to look after yourself and thanks again.
Concur with your thoughts. Fear is present and palpable.
My autonomics are hung up right now tween fight and rest. That leaves me in window of cyclical attacks.
Neurologic system waiting on feedback clues which are blocked. Throws whole system into shutdown. Rinse and repeat.
Unable to break the gridlock. Have to wait for self to restore.
Only give you a glimpse of opinion as Emory U. In USA who hosted conference just laid first railroad track segment for their long term patient infrastructure system for FND and it obviously pointed in wrong direction. Glaring disregard for patient spectrum.
At least comments I heard from UK speakers, and I only heard partial, approached what I thought might be grasp of reality.
Emory U. put whole thing in circle with no entry / exit points.
Only other comment is in USA get one shot at diagnosis. May have ME expertise but only works if you hit mark with right provider. Otherwise, vulnerable to miss and get toss in FND jungle.
I have parallel to ME criteria but no access. Does that make ME expertise more valuable than UK? Do not know so accept your assessment of expertise without objection. Saw no evidence in room of any way to get consistent diagnosis opinion on FND. Sorry. I stand by that impression for now.
Oh believe me Dan, I'm no expert. There are many patients on the forums far more knowledgeable then me. But nevertheless it's amazing how fast you do have to learn for yourself at least the basics when you are abandoned by the medical profession with one (or more) of these sorts of conditions.
Love to talk more re ME v FND but you clearly are in need of rest and are still busy with the conference so will leave that for another day.
I have read more of your posts today and I just continue in awe at the wisdom of your advice and the approach you take in the myriad of issues facing the community.
I realized that you are so very thoughtful and caring and quite deliberate in protecting others. Such wonderful traits.
I carry no hope of convincing the medical community to act in an ethical and patient focused care environment for those with the FND diagnosis.
I see way too much divisiveness and a complete unwillingness to step back and say maybe we are not approaching this disease in the right way.
At the same time, I recognize as a chronic patient in the healthcare system, I had placed way to much trust that practitioners knew what they were doing and would ultimately help us. I was so wrong about that.
For me, it brings into play the likely need to attack the system head on and to tell them what to do instead of vice versa.
Not my preference, but then neither was getting this disease or the cursed diagnosis that comes with it.
I look forward to more of our conversations. I do feel strongly that the tone of the FND advocacy base has to become more assertive in the USA.
Thank you Dan, that's such a lovely thing to say. For me that is a huge compliment. I know the struggles I go through and it breaks my heart to think others are going through similar things too (or even worse).
Sorry to hear your thoughts on the US approach to the condition. Can't help thinking though that is yet another similarity with the ME story. Reluctance on behalf of the medical profession to acknowledge the conditions existence or the fact that they may have got things wrong = at best neglect of patients and at worst actual harm. So much for the Hippocratic oath.
Thank heavens for the internet or the patient community of so many debilitating conditions would truly be left to rot alone. So please be aware wherever in the world we are we will all support you in your quest for recognition. If for no other reason than because what helps you ultimately helps us all.
Your third sentence is at the core of the issue for me. Suffering is hard enough. Suffering by exclusion from care is intolerable.
I try to keep open mind as I ponder your second paragraph. In USA, when any disease is linked to psychiatry and there is no science behind that link as in FND, medical profession, by default, uses that lack of science to bury the disease like a dog buries it's bone in the backyard.
The opening remarks at the conference called FND a disorder at the interface between psychiatry and neurology. What on earth could that mean? I do not know. How did he know? What is the science behind that statement? Do all FND patients have psychiatric problems? Are those problems cause or effect of our disease?
Blanket assumptions are not useful in the unknown!
Without alliance of our community with ALL sufferers of these type symptoms, we will be weak. Population needs to be inclusive and united.
Again, I only in search of truth. Not here to drive the conversation. Observe, report and respond....
I think one of the most bizarre things I have read so far was on neurosymptoms.com that says when people get diagnosed as having fnd and given a leaflet about it their seizures stop and they improve. Personally I don't believe they had it in the first place if that's all it takes to cure them and then in the next breath they say it's not all in the mind, I say " we'll make up your mind " they obviously don't really know what they are dealing with and at the end of the day doctors don't live with it's devastating effects every day. I had a seizure on Saturday that lasted three hours and yes I have the diagnosis of fnd and 'the leaflet '
Once again, you hit bullseye in target with arrow. I admire your common sense and direct speak.
Burn that leaflet for me. I need to know that at least one less copy is floating around on our earth.
Will never let go of your words "devastating effects" and "don't really know what they are dealing with."
Medicine really got this mixed up into a big mess. A leaflet is of no help at all and very harmful to us who suffer hours if not days at a time within each week...
Together united with hope for a better future for us all x
Hi Dan, proud of you for attending, I struggle to get to an appointment and then go into seizure and shutdown so for you and family to attend to me is overwhelming. Like you my symptoms overwhelm me for days after an appointment. I hope you can feel a bit better soon and I will be thinking of you (when I remember) it isn't any different in Essex where I live, no ones heard of FND, i changed Drs over a year ago and he said I've never heard of what you have but I'm willing to take you on and learn with you. It was a better result then my last dr but again no help as he doesn't know anything. Just well done dan for going from all of us left suffering. 🤗🤗❤️️❤️️
Lisa-anne.
You just shine like full sun on a blue sky day. I love your courage. Read your post back to Annie2222. You described it so well. Eat when you can. I eats bites almost continuously through day to keep that part of system working. I thank you for your compliments. I just trying to see what is going on in their heads. You, me and Margaret and so many others going to have to rearrange the way that medicine thinks. You offer powerful words in your posts. I listen to you. Really helps me.
Positive news to hear you have doctor who at least walking same direction on path even if he many steps behind.
May a few hours bring relief from the chaos today.
Hi Dan, I am sorry you are being hit so hard after this. I do have to say near the end of the night, the moderator did comment about you and your family, and this website, but she couldn't remember the name. I happily supplied that for her afterwards.
I too left not knowing how to feel about the conference. There were some good things, but a lot of stupid things. I loved the look one of the docs gave you when you shouted out to praise something said.. if looks could kill, you wouldn't be around.. oh my goodness she didn't like that. Was too funny. You didn't miss much after you left though, it was not the best of dinners, Way too Hot and Spicy, and they just had the people from NY magazine there. It was interesting to hear, but kind of a waste of time in some ways. (hate to say that, but..) Keep fighting the fight my friend.
My admiration for your strength to stay through to end of Friday session. I was fading fast and could not stomach any more of it.
I hope my outburst did not embarrass you or our community. I know right from wrong. I chose to remove myself from room for while as I take it all personally and extend that to this community.
I beg you to post your perspectives on what you heard and read. You important person to be heard from and I know I do not always process information properly.
Was terrified of evening menu anyway. Sorry they let you down on that one.
Body devastated. Loss of function now widespread. But back home which makes me happy. Patricia and Andrea my angels. I do for them today. Did get to kiss cheek and gentle hug my 85 year old mother-in-law who I have worshipped for 43 years. So special to sit with her and listen to her while in Tennessee.
Aware of the gift of life and its fragility. I salute you and everyone who must fight again today. Looking forward to rejoining in trenches. I have asked God for more arsenal when I do.
Our family love. Community very grateful to you for your efforts.
Dan / Seattle
P.S. Those docs could not have killed me in that room. I am like a nasty bug running around on floor looking to strike. Besides, many docs in Seattle have tried to do away with me. I just will not go, at least not voluntarily.
Not embarrassed at all. It needed to be said. Dinner was not good, you didn't miss a thing, I went out afterwards for good. I will try and come up with something.
A big thank you though for taking the time out to Go to the event with family.
I agree, Bridget and the fnd hope team really are incredible. I'm very fortunate to be asked to help where I can, often feeling lost as these women are such ambassadors and a real strong front for all of us here.
As a community we are fortunate to have such a well structured group at fnd hope who meet weekly, and as you said dan, many spend countless hours each day fighting for us. Although it may not always be seen, they really are.
Some exciting things coming with fnd awareness day and I encourage you all to check out the Facebook fnd hope page at some great simple things you can all get involved in
Thank you for paying a proper tribute to the FND.hope team. I share sentiments. I believe there are many battles being fought behind scenes on our behalf. I again want to thank you and all of that team for reaching out to make contact and provide support.
That is how I found this community and I will not forget it.
I am of the preliminary opinion that this fight needs to be opened up a bit and carried to the providers of medical care for our disease to ask the question:
" If you believe in what you are doing, then may I ask you to defend your position with science? "
There are way too many facts missing from the care delivery process. We need facts because our lives are at stake.
As my family has been told many times by specialists, " my daughter has exactly the same thing as her father (me)."
My retort is always, if that is true then back it up with genetic linkage or some common trait other than our "minds" which are inherently different.
There reply is the same: They can't.
We have to press the issue. We have to assert, challenge and possibly offend those in the towers of expertise to get them back on the road to knowledge and truth. Without that, we leave the future without hope. Please help us push the envelope.
It's a shame how people who don't understand rule it out completely
I had to explain in church to people about it as they were unaware etc
But they know understand more. How we communicate is key and without anger or upset is the way. That's why there are so many great communicators who are doing this on our behalf, you experienced that at the weekend
Appreciate your kind words
I'm just passionate as I feel strongly for it and believe there will be a cure and deeper understanding one day
Be blessed
And it's a windy cold day in scotland, sunshine then rain then hail then snow... it's a great confusing place! Maybe the weather here has fnd as can't quite manage to do 1 thing consistently haha
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