I just posted two replies and noticed a "moderator" tag by my name.
This is incorrect. I am not a forum moderator. I do not have the competency or willingness to serve as a moderator for this forum.
I am only a patient trying to understand what is going on with this disorder in the community.
I have asked for this tag to be removed immediately.
I am always here for you folks and live to read and think about your posts. But I am clueless about forums, the internet and this very complex but in my opinion misunderstood disorder.
I can not take any responsibility for any duties assumed under the term " moderator."
Don't panic Mr Mannering! I'm sure it will be sorted asap! 😀 Your responses are always informative, supportive maybe the internet has decided to give you a title ! Have a good day! Waiting for storm Doris to hit the U.K.!
My mother's name was Doris. She was a strong willed red-head who could chase us down when we were kids like the sheriff going after street racers. I hope your storm is not quite that intense. I miss her dearly to this day. Love you mother!
Dan / Seattle
P.S. I started running from titles when people introduced me that way instead of calling me by my name. Good to hear from you.
Ok Dan I understand your concerns.
Don't worry! That's a big job being a moderator. Please don't leave us though your support & input is valued.
Best wishes
Ali
Hopefully this will be resolved soon!!!!
• in reply to
Sunshineali.
You always get the egg " sunny side up " as we say. I appreciate you and your perspective more than you know.
What happens when you get older like me is you get more afraid. I am trying not to be that way but I am a gullible type because I want to trust people. Hard habit to break.
Dan, I always thought you were a moderator, by the way you write. There's a lot more to being a moderator than just approving/not approving posts and members. Leave that to those who do that well, and just continue being you - someone who always seems to be there to help those in need, to help pick them up and give them hope when they are down and have no hope. You do this part of a moderator's job really well, so why not continue to be a 'moderator' or a person who's there to help people, to walk their bumpy and confusing road together with them.
I have no idea how you came to be a moderator, but I wouldn't let the title scare you. (I've been moderator or owner of several Yahoo and Facebook groups over the past 15 years, and let me tell you that lots of moderators do one half of their job really well, and not the other half at all...so I'm speaking from years of experience )
VivienneWaterworth.
Hello Vivienne. I see something by your name that says "volunteer.". I do not know what that means. However, I do thank you for taking your time to write me and the guidance in your words. I am flattered - I think....
I am from Tennessee. I know a volunteer as a Tennessee Volunteer. Maybe that is why I wear orange from time to time. I also volunteer as a tutor down the street at the elementary school because I learn so much from my third grader.
I am not a moderator. I write like I have always written. Maybe because I wrote many " white papers" about technical subjects that were simply presenting problems and possible solutions.
My love of life is seeing people thrive. Everyone has talent and joy to give to the world. The foolishness of letting a disorder languish in the unknowns of the label "idiopathic" is counterproductive. So, let's find the flashlight and have a little fun in this darkness.
So again, I ask the world to take the tag of moderator off of my posts. I was asked if I wanted it, I explicitly declined it and yet it magically appears to my great dismay.
If whoever put it there does not remove it, I will withdraw from the site. Going incommunicado is a specialty. I disdain titles of any kind as it detracts from the essence of goodness that runs through the spirit of people in this community.
I am a silly country boy who is dead set on things being done right. I appreciate your years of experience but communication is about honoring people and their wishes. Time is now running out for me.
With highest regards for your integrity and wishing you a most pleasant evening. Thank you for being you.
Dan / Seattle
Dan,
Your are a great man very informative and very intelligent. I do hope they remove this tag!! As I understand you don't like it. You help us all on here so we don't want to loose you! I hope this is resolved soon. Please keep us up to date.
God bless
Ali x
• in reply to
I am quirky Ali.
I am also dearly attached to all of you.
Momma always said "you will figure out right from wrong or I will teach you the hard way.".
Even being not so smart, I think about things as what is right vs. wrong.
Slapping labels on me is wrong. I do not want or try to be anybody else. A role model of mine once taught me the spiritual phrase "I am.".
So when people ask, I simply say "I am.". That is good enough for me.
Hugs from the kitchen.
Extended family grandbabies coming over. We set up step stools by kitchen and try to make cookies. Should be highly entertaining.
Bye for now
Dan in kitchen prep / Seattle
Have to walk dog first. This outing gonna be hilarious as legs not cooperating.
Awww Dan 😊 What a lovely day your sharing with me speaking of your grandbabies)hugs) since my mum past we miss her so much my son wears her chain around his neck. They all have memory boxes from her. My mother in law is Canadian and I'm hoping we can travel to see them this year. My husband has a big family his father has 12 siblings and his mum 11. So I really hope we can travel this year.
You have a great day baking those cookies my daughter loves to bake.
Enjoy every second of your family time.
Ali x🙏
• in reply to
Sunshine.
Love Canada. Always wanted to move there.
What a huge family! Hope you get to visit.
Wave at me from border. Our country getting so hostile and unstable, I am afraid my international travel days are over.
One time a border guard told me the only reason he was letting me back in the country was because of my southern accent. And, I was born here. Times a changin'.
One grandbaby has fever so no cookie baking as I can not be exposed.
Send a kiss to your mum and keep those memories close.
A friend always.
Dan / in cold Seattle
Much love coming my way to your family Dan. Yeah Canada is a lovely place and you never know we may just make the move over to be with family.
Bless your grandbabie hope the fever passes quickly so you can have a hug and bake those cookies.
I send my mum a kiss every night and say I love you. Just like I did when she was here. Phone call every morning and every evening to say I love you! That'll never change.
Email me at my FNDhope.org address and I will get you removed as moderator. Sorry for any misunderstanding. It was here I first found my wonderful community and support network. Now I volunteer for FND Hope, so let me know if you ever wish to you would be wonderful and so many people appreciate you. Send me over white paper when done and I will have Bridget include in her video interviews. Try to find her when you are at conference. She is a speaker.xxoo
I type with one finger and have one eye shut good bit of time due to face spasms.
Best I can do with list is bring it with me on plane. I keep getting questions to add. The questions contain much more detail than what I posted on site last night.
My word.doc program is old and I don't think readable by current version. However, I will bring lots of white paper copies if you folks and conference also allow people to pick them up in person.
Your Q&A sounds great. Any answers might help people.
Just a patient. My daughter a patient. My wife a caregiver. Just want to give folks hope in small way. Not even able to function as good as you do. I would make a poor volunteer in my condition.
I have come a long way Dan especially the last year. For 3 years I would not tell anyone I had had a brain tumor removed besides having epileptic and non epileptic seizures.
I was sent to psychiatry 3 months after my golf ball size tumor was removed. Looking for the hidden trauma that NEVER existed. For two years my life stopped, sound of any sort was unbearable. After I almost died with adrenal failure someone finally realized my pituitary gland had shut off.
I am now on cortisol, take Vitamin B, etc...
almost but not completely free of seizures
But still have after brain surgery issues. Most of the neurologists I met I could do without. Have a few good ones now at Stanford.
Too much is in the psychology department. Ah guys software issues and possible hardware issues?
Anyway you are no longer a moderator..
Bridget is trying to get a meeting room at the Marriott. She is speaking at 10 ish on Friday. You will appreciate what she has to say especially around labels and the lack of consistency. Also remember this is a psychiatry based event.. so she needs to be respectful.
Thank you for your kind words! And all your awesome efforts!!!
Also at lauren@fndhope.org.
This has been my alone space as a patient. But I am good now to let the world know that I am part of one heck of an awesome community.
I really feel like it has been my gift. I found this group in my confusion. Found FND Hope and used what brain cells I had left to rebrand and redo the website and the rest is history. You can find me on FNDhope website under volunteers. Any help we can lend and the voice for patients, any suggestions etc.. YOU made my job very easy today in finding your list... lots of same type questions from other people . Seem to be the best questions so far. Very astute and knowledgeable patients definitely more so than some doctors I have met.
I was born in Biloxi but live in the SF Bay Area. Looking to put together a support group at Stanford...
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