Calling all writers - help!

Discussion in 'Your Living Room' started by HeadNoise, Sep 27, 2006.

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  1. HeadNoise

    HeadNoise Invisible Me

    I have applied to the Secretary of State in Missouri for a registered name for a Meniere's non profit organization - purpose is for education and also eventually to establish an assisted living facility. The ByLaws and Articles of Incorporation are in rough draft stage. Officers and board members are coming together.

    A resource manual needs to be compiled explaining all the aspects of diff vestibular diseases, symptoms, diff between vertigo, dizziness, disequilibrium; treatments, triggers, psychological effects, how to apply & get SSD, insurance & legal issues, working on the job with MM, and a thousand other things.

    I know a lot of you have information, files of information. I need people to contribute chapters of your choice (with some organization and coordination of course) to this book which may end up being the size of a large telephone book.

    The book will be used for both MM, BPPV, SCD, MAV, etc sufferers and also for a guidebook in educating volunteers and staff who would work to establish this assisted living facility.

    Ex: acoustics, lighting, diet - all issues in this facility that are unique to Menieres et al and would have to be addressed before the facility would be satisfactory. It can't just be another tile and fluorescent lit nursing home!!! Can you see the issues here?

    If you feel inspired to help with this - a long term project, WE NEED YOU! Everybody has knowledge about different things. I've not applied for SSD, I wouldn't know a thing about writing about it. I have a cochlear implant, I could write about that whereas others of you could not. So each person here has an experience or an area of "expertise" that could contribute to this manual.

    I foresee a website of material - brochures, books, DVDs and videos also developed. Non MM people are welcome to write - coping as a family, etc. MM and raising children, or having a parent with MM. Please help us make a difference here - many people spent decades without support in the past. The computer & internet has made it possible that for future sufferers, we can make life much better. There must be some reason we are all here, keep struggling along together, gleaning support and encouragement from one another. Let's pass it along!
  2. Linda1002

    Linda1002 New Member

    Sherry - There was so much good info on the forum in the Child Boards section before we had to begin again. I wonder if Ray can retrieve that?
  3. tucker

    tucker The Meniere's DVD Guy!

    Sherry pull anything you want from my website. I might be able to help with something down the road....I was going to write and ask to remember the lighting! but you are ahead of me.

    Keep me posted

  4. Linda1002

    Linda1002 New Member

    Sherry - Check the database......I see some people are reposting some good stuff. I've also sent a message to Ray and asked for help.
  5. Andrea1962

    Andrea1962 New Member


    I would love to help out in any way. If you need any information specific to BAHA's or Delayed Hydrops I can help.
  6. HeadNoise

    HeadNoise Invisible Me

    Yes Andrea & to everybody else - Yes!
  7. Titus

    Titus New Member

    Sherry, I might be able to write a chapter on depression and chronic illness.
  8. gardenfish

    gardenfish New Member

    I have something on stress, besides personal experience, that I will try to locate.
  9. Bergie

    Bergie New Member

    I can give you info on BPPV and VRT...also Vestibular Ocular Mismatch, if you want.
  10. SpinininOhio

    SpinininOhio New Member


    I have a background in writing and am willing to help. Don't have anything to add upfront, but can help edit and coordinate when the time comes in order to bring different writing styles together as one and make the book flow, etc. Just let me know.

  11. Linda1002

    Linda1002 New Member

    I'm also available to help organize and put things together.

    I see the site Data Base continues to grow with a lot of good info.
  12. gardenfish

    gardenfish New Member

    okay,I am thinking about what I can do. hmmmmm...
  13. HeadNoise

    HeadNoise Invisible Me

    All these are great ideas! I want info from people who have had surgery, successful and unsuccessful, yes Bergie on BPPV & it's treatment, how your family supports or doesn't support you; what assisted listening devices you use, how you relate positively or negatively with your drs; alternative treatements like accupuncture, chiropractic, Johns of Ohio; prednisone - good or bad; SSD experiences, VNS, tinnitus & TRT; driving a car; working or not; depression, spiritual aspects; self esteem, coping and hope; living alone; raising children with MM; the topics are endless because we are all different and I want to address those differences in the book.
    Also want to include things that mimic MM, SCD, MAV, BPPV - TMJ, allergies; triggers -what are they?; journalling symptoms; flying in an airplane; lighting and acoustics.
    Everybody has something to write about their own personal experiences. Isn't it great when you hear about somebody else who has the same weird thing happen to them? I want this book to be a resource of all things vestibular.
  14. Bergie

    Bergie New Member

    So you want us to write this about our own experiences, what we've been through as far as how dx or misdx and symptoms...I mean...everything pertaining to each individual? Like a bio on the subject?

    I need you can see!!! LOL!
  15. tamarak

    tamarak New Member

    One way to go about it would be to have a series of "personal experiences"--where the whole thing is written from a first hand point of view. Each one could be a focus of something eg. "Christine's Story: Valium and Menieres" or "Tamara's Story: A Lifestyle Changed" etc. This way, people won't have the pressure of the "research" and footnoting etc. and can just write easily of their own experiences. It would be a good section to add to the more hard stuff (eg. diagrams, conventional knowledge, etc.) and the resources section (directory of specialists, etc.) and the basic, general stuff (eg. basic facts about Menieres).

    I'll help where can. I'm good at researching, referencing, organizing, editing...well, basically this stuff is all my forte. It's actually what I do best (and it would make me happy to put my years at university to use!)

    ps. while I was posting, Bergie wrote I said, I think that it would be a valuable section to have the experiences--possibly a book unto itself. Just a wonderful resource for people.

    Mind you, my understanding is the centre itself is for people who've really degenerated in the illness--maybe the personal experience project would be more for newly diagnosed or people searching for a diagnosis. It might be a separate project. What do you think?
    I love your audacity!

    Keep it up!

  16. HeadNoise

    HeadNoise Invisible Me

    I envision a chapter on a particular pertinent topic , and then give a cross section of personal experiences - some good,some bad. For example if the chapter was on surgeries - there are people here who have had successful shunt surgeries, others have not. I don't want to scare the crap out of people, but I want to be honest that everybody is different and here are some examples of REAL people who had these experiences. Be as detailed as possible and give as much explanation as possible. Editors will put it all together to make it make sense! LOL
  17. tamarak

    tamarak New Member

    Sounds like it's going to be a great contribution!

  18. Joe the Bee

    Joe the Bee New Member

    It's a great idea to put together such a book since there aren't many personal stories available in especially bookstores.
    I would like to help out, too. I don't live in the USA, but in Europe. MM is treated diagnosed and differently.
    Let me know what you think. Normally, I write fiction-stories as a hobby, but I can also write about my own experiences and those of others I know who have this disease.
    Love, Joe
  19. HeadNoise

    HeadNoise Invisible Me

    Joe, doesn't matter where you are or if you have different treatment options in the UK. Someday those might be approved in the U.S. or people might be interested in even travelling there for treatment if it sounded good. The U.S. does not have a corner on medical advances, so I think this would be a good chapter in itself - & I know there are some others in the UK, or Europe that had had experiences they could write about.
  20. HeadNoise

    HeadNoise Invisible Me

    This might develop into 2 separate projects - one with personal stories and another with "factual information". But even the personal stories book would have to have basic explanation - what is BPPV before Bergie's experiences would be appreciated.

    So, SpinnininOhio reminded me, and the lawyer & I have discussed this - if you quote from any other source, document that - footnotes are a pain, but we can't plaigerize people or not give researchers credit for their work. So if you quote from a website or a book or any other source, please at least write that down.

    Lawyer says most authors are happy for non profit organizations to quote them and often send additional information and research. If some person here on the forum feels led, perhaps their job could be to get in touch with these people (on down the line when we get to the editing point) and get permission from them to reprint.

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