My vote for WPI to sart a "Recline Villiage" in honor of "Incline Villiage"

Discussion in 'Fibromyalgia Main Forum' started by nah.stacey, Dec 28, 2009.

  1. nah.stacey

    nah.stacey Member

    Don't you thing that would be apt for WPI to start a housing project for people who test positive for XMRV and FM protocol. No not like a leper colony, like a rehab community where roommates are matched by compatibility, or severity, or spouse if they have one. Where everyone knows the incapability of the other, not the total disability, that's up the the neighbors to share, if they want their total disability range known. We can help out when we can and have flare when we need it. How else will be take care of those who are alone and incapable.
    I wan't nothing more that for those of us are sorely misunderstood and lonely to have someone to help us through the darker days, like Holidays, which should be happy days. There is plentry of love to go around and maybe your family can come to ours. Since we can't travle.
    There must me a better way. No one should be alone unless they want to be.
    Love my friends so much,
    May God bless you body, heart, and soul
  2. ladybugmandy

    ladybugmandy Member

    its a nice idea...i am hoping, however, that with research, they will soon find drugs to help us and we will not need to recline!

  3. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Somewhere in the carolinas or other state in southeast, not MS, Alabama or Georgia, possibly Virginia, is a community in a city that was redesigned for CFS folks. I saw it in a newsletter a few years ago. It was a newsletter on the Internet. Doctors were there that understood, houses without steps, things close by, etc.

    I don't know if it is still active.

  4. victoria

    victoria New Member

    it was in Aiken SC (I'm sure they didn't mean a pun by choosing that town (say it out loud). They also had a place in Maine. Both filled quickly and have a waiting list.... no surprise. It was an excellent idea, and I wish more would do something similar.

    I've made several posts about it over the years, but can't find it using the 'search' feature up above... maybe someone else can. I also googled it but couldn't find it... I wonder with all the economic upheavals if anything has happened to it/them.

    I did find this, however, tho it isn't much - at least I can't see where else they talk about it:

    but I'm having a bad headache day, so I may have missed it.

    [This Message was Edited on 12/29/2009]
  5. AuntTammie

    AuntTammie New Member

    nah.stacy, God Bless you.....your caring heart just shines thru all your posts

    as to "Recline Village", I love the idea and I also agree with Sue that recovery would be even better.....still, I have long wished for some kind of housing where many of us could live together (separate apts or small cottages or something, but all in the same building or on the same property)

    .....aussiewoman's plans look so wonderful, but Canada is not an option for broke, disabled Americans, based on their immigration requirements

    as I posted on her thread, I have often thought that it would be really cool if we could get Extreme Make Over Home Edition to do something for us.....I don't know if it would be possible to purchase property and get them to build a complex from scratch, instead of the way that they usually do it (they have done multiple dwellings/buildings/etc at once, so a small complex or grp of small buildings would probably be feasible - it is just acquiring the property that would be hard.....I know many of us, myself included are quite broke, but maybe if we got them to agree to this and we pooled our funds for the property????)

    .......the thing is if they were to do something like this, we could get it made so that it would be mold resistant, allergy/chemical free , ie: safe for those with MCS, wheelchair accessible for those who need that, and basically accommodate all sorts of needs.....and in doing so, we could totally raise awareness of what CFS is really like

    .....a lot of times they do something special for whatever cause/issue is represented that week, too, so maybe they could do somethign that would raise money for the pocketfund or WPI or something else like that.....they could even try to get someone like Dr Donica Moore or Dr Klimas, etc to speak briefly about CFS.....I do wonder, though, where on earth they would send us during the construction since most of us are not up for Disney World or anything like that!.....of course, since they would not be kicking us out of our homes while they did the work, they might just have us stay put.....actually, that might make more of an impact anyway, bc people would see that we are even too sick for a vacation!

    I realize that I am probably just in dream land here, but wouldn't something like that be incredible?.....esp if it were somewhere like San Diego or somewhere else with a really moderate climate, and esp if we could find a way to get some volunteers to help us with things like grocery shopping, cleaning, etc when it was all built and we were living there (although even w/o the volunteers, if enough of us were there, we could support each other with this stuff when able)

    ETA: I have to say it would be cool to meet Ty Pennington, too- I really admire his work - both the quality and creativity and the fact that he is helping so many people.....would sure love to have half of his energy : )[This Message was Edited on 12/29/2009]
  6. AuntTammie

    AuntTammie New Member

    the link is a good summary and starting point for something along these lines.....I think that in general including well people (unless they were somehow connected to those with CFS) would not be the best idea, bc too many just do not understand and I think that we would wind up feeling stigmatized, which is what we want to avoid....obviously there are advantages to having well people there, though
  7. victoria

    victoria New Member

    That is what was done in the Aiken SC community, I've seen photos of it, it was very cute/nice.

    The homes were within walking distance of the town (a college town), had special set ups for financing, they were looking to make some homes for MCS people as well... it seemed pretty ideal for a start, at least. It also helped the town as it was built in a blighted area, I'm sure they got lots of special advantages for doing this, as aussiewoman was talking about in Canada.

    Seems to me if these 2 communities got off the ground... they would work in many places.

    Ah I found my old post - sadly the website url is no longer working however:

    4/12/07 8:29 PM AFFORDABLE HOUSING for CF/FM COMMUNITY in Aiken SC----------- I've posted about this before... Looks like the project in Aiken SC is shaping up fast: -------------- excerpt about price: 100% subsidized financing is available for qualified low and fixed income buyers. There are only 25 more homes to be built on this site and we would like them all to go to FM/CFIDS applicants, so you need to apply as soon as possible.

    rest of article on page: In conjunction with the City of Aiken Community Development Department we are able to offer PWCs, "a community within a community", of newly constructed 2 to 3 bedroom, 2 bathroom homes in an adorable neighborhood redevelopment in the center of the City of Aiken.

    Toole Hill is close to the unique downtown and historic districts and convenient to everything. These homes are available for only $80k to $100k. The PWC homes can be made handicap accessible.

    100% subsidized financing is available for qualified low and fixed income buyers. There are only 25 more homes to be built on this site and we would like them all to go to FM/CFIDS applicants, so you need to apply as soon as possible.

    Please note that it could take up to 6 months from time of application for your home to be built. You will need to sign up ASAP with $100 deposit (refundable). We are able to offer reasonable priced temporary (weekly) accommodation if you wish to visit the area. -------------------

    As i said, the last time I checked (maybe a year ago?) they were full and had a waiting list. Seems like something that would 'go' if someone could work it out.

    Editing to add, I googled 'Toole Hill Aiken SC' and came up with the homes as rentals under the housing authority. So perhaps it went bottoms up with the economy? Hard to say, but everybody's been hard hit. It would be interesting to know what happened, since the homes apparently got built.

    [This Message was Edited on 12/29/2009]
  8. elliespad

    elliespad Member

    Found this,
  9. victoria

    victoria New Member

    interesting as it's got 2009 at the bottom of the page...

    seems like they may have changed the focus, but wonder if it would include other problems like CF/FM/ME since many do have MCS as well:

    "Those interested in purchasing land or starting a group to create an MCS-safe housing project should contact Recreation Health and Wholeness. Warrington asks interested parties to email and include a telephone number so discussions can begin."

  10. MKate

    MKate New Member

    HI =

    I have the same idea -- but for financial reasons. WE are all dying financially - unless we have a spouse who can still work!!! I do not.

    I would LOVE to see something developed. While I have hope for a cure - It is quite small - at this time. And, my practical side keeps asking how I'm going to pay the bills. I'm depleting what I have.

    However, I could pool Or rent (a low-income type thing) in a shared community and have a better social life. I hate that I've spent the last 16 years primarily by myself - holed up all hours resting!!! This is insanity - and I've stayed very sane - despite the isolation.

    Love the idea -- how do we work together to create it? I want to be in Incline Village for testing and medical support that I cannot get here. There's no point in asking any doctor for anything - they won't give any IV's == theres ' nothing here they will do. Stuck in a small town in Wyoming and ready (when my mom dies) to make a move that works!!!!!

  11. AuntTammie

    AuntTammie New Member

    when I cut and paste then click on the site for this link, some art thing comes up????????
  12. AuntTammie

    AuntTammie New Member

    that sounds so nice.....I do wonder what wound up happening.....seems odd that no one from there has ever been seen posting on here or on any of the other MS/CFS sites I go would think that at least someone connected with this would be on one or more CFS sites/message boards
  13. elliespad

    elliespad Member

    Try the link again. I tried it and it worked, otherwise, Idunno. The title of the article is:

    MCS - Safe Housing Proposed.

    Came right up for me when doing a search with title too. Good luck.

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