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Thread: I got a U-step walker!

  1. #11
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    Thanks, Cat. I like the that the design has it bottom heavy so if you fall, you can use it to climb up.

    ANN
    There comes a time when silence is betrayal.- MLK

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  3. #12
    Distinguished Community Member Howie's Avatar
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    Cool

    I would be more than happy to test it for awhile!
    Evolution spans the Universe.

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  5. #13
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    ((((((ANN)))))) ~

    What a wonderful gift! And it's a really cool walker! This would have been so perfect for Jonathan. I hope you gets lots of mileage out of it, doing and seeing all the things that make you happy.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  7. #14
    Distinguished Community Member agate's Avatar
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    Rose, are you signed up for Nextdoor for your area? It's how stillstANNding found this giveaway, and people DO often give away very nice medical equipment when there's no longer a need for them to have it--and they're eager to give it to someone who needs it. There seems to be a very informal network of people helping people out there among the disabled, who recognize that services and useful items aren't so easy to find out about or get. This is their "invite" link--which they state can be used "in social media posts to invite your friends and neighbors." They say it can be used for "friends across the country." So anyone here who is in the US could probably use it. It's a great way to find out about power outages, neighborhood problems, etc., but it's also a place where that informal network is operating--people giving away or selling items, people starting up a small home-based business.

    https://nextdoor.com/invite/jmxrdwdnpddpwjxncjsg
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  9. #15
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    I just checked out that site..there is apparently none in my neighborhood. I don't know too many neighbors around here (my bad. I've lived here for 20 years; only have the email for 2 neighbors, phone numbers for 1, know "on sight" about 4 more...), so I'm not able to set up my neighborhood. Too bad, as I think there would be people around here who would benefit from this..

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  11. #16
    Distinguished Community Member agate's Avatar
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    They might have indicated that you could set up your own group by becoming a Founder. I don't know much about how that works but it might not be too difficult.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  13. #17
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    ((((((agate)))))) ~

    Thank you for the link. I don't use social media for a variety of reasons, primarily for privacy protection. I am wary of publicizing our address. Given the demographics of our neighborhood and surrounding environs, I doubt that it would be a comfortable place for me. I literally do not speak the language of the growing demographic.

    I researched NextDoor for reviews, and I found a bunch of negative reviews about bullying, poor moderation on the site, political conflicts. It's probably not like that everywhere, but those, who posted complaints, were from various states and cities. I'll give all of that a hard pass.

    Unfortunately, Jon is bed-bound. But, when he was walking, the U-step would have been ideal for him.

    Any medical equipment we purchase for Jon is new, so that we get a warranty and service. Like his hospital bed, alternating pressure mattress, even his pulse oximeter. Other equipment, such as suctioning machine, nebulizer, and O2 concentrator, are provided by Medi-Cal.

    Obviously, NextDoor worked really well for you, ANN. That's wonderful. I hope it's beneficial for many others and that there are no problems associated with it. It's just not for me. When it comes to social media, I'm a shrinking violet.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  15. #18
    Distinguished Community Member Howie's Avatar
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    Smile

    Don't you mean a shrinking rose?
    Evolution spans the Universe.

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  17. #19
    Distinguished Community Member agate's Avatar
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    It's a listserv, and listservs have been around for a long time. But yes, there are flaring tempers and posts that get removed.

    That's one reason I almost never have anything to say on Nextdoor. I just read some of the posts and very occasionally "like" one of them. I figured it wouldn't hurt to get their e-mails and read a few of the posts now and then. I have no intention of becoming involved. If someone posted about an item that appealed to me, I'd reply to that person by PM and we'd take it from there.

    Incidentally, some people with MS or other neurological disorders might turn up, and I might send them a PM referring them to BrainTalk. So far I haven't noticed any but I don't read 90% of the posts.
    Last edited by agate; 09-08-2018 at 04:31 PM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  19. #20
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    ((((((Hugs to All)))))) ~

    agate ~

    I didn't realize that it's a listserv, as it seemed to be promoted as "social media." My first experience on the internet was with a listserv out of Australia for parents of children with G Tubes in 1999. But this is far different that that, of course!

    Howie ~

    Good point! Actually, I am a shrinking Rose, since I have lost 2" in height over the past few years.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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