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Thread: Thank you for pumping up the Stiff Person Syndrome sub forum

  1. #1
    Distinguished Community Member Sunshine's Avatar
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    Default Thank you for pumping up the Stiff Person Syndrome sub forum

    The traffic is increasing. There is even a new member, kickingIt. She even posted question for Rose and funnylegs.

    Thanks to all. I truly hope to attract more people with SPS. Itís such peculiar symptoms that itís hard for friends to understand it.


  2. #2
    Distinguished Community Member SuzE-Q's Avatar
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    That must make it much more difficult, not to have a support network of people going throuhh the same thing.

    I admire your initiative!

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  4. #3
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    Sunshine, I hope you do get some traffic that can truly relate to what you are going through. Although, having known you for quite awhile I feel that, to the extent we can that we here on this forum understand. I have read some about SPS since you were diagnosed. Until then I had never heard of it. I can only imagine from MS what is going on, but then you have that to contend with in addition to the SPS. The symptoms seem to me to be somewhat alike.
    Virginia

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  6. #4
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Sunshine)))))) ~

    I love your new name!

    You have done a stupendous job in creating the SPS forum, and I truly hope that people, who have SPS or love someone, who has SPS, will find this forum and feel welcomed, understood and loved. We all know how important support and compassion are on our journeys. While we aren't numbering in the thousands here, those of us who are here, offer that kind of support and compassion.

    It doesn't matter how common or rare the disease or condition is, we all need people, who "get it."

    You have done a wonderful thing creating this place for people, who need us to travel beside them on their journeys.

    If you visit SPS websites with articles that have a comment section, you might consider posting in the comment section and give the link to this forum. Just a thought about advertising to get more members. Are you on social media? You could create an SPS Twitter account, or Instagram account and possibly attract more members.

    I love that you are being proactive. And you don't give up.

    You deserve a round of !!!

    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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  8. #5
    Distinguished Community Member Sunshine's Avatar
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    Thanks! I don’t know much about Instagram or Twitter. Actually know zero about them.

    Didn’t want to link to FB due to lack of anonymity .

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